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  1. Admin

    STEREOTACTIC RADIATION

    Tim You will find articles on this site about the abscopal effect under the more commonly used term "oligometastatic". http://forums.jimjimjimjim.com/search/?q=oligometastatic I have had the opportunity to talk to both Declan Murphy and Chris Sweeney about their experience with this. Anecdotally Declan Murphy, whose family are into Pokemon, calls his experience "Pokemet" because, no sooner has he radiated one met than a new one popped up a short time later. On PubMed they published a short warning that the treatment was experimental: https://www.ncbi.nlm.nih.gov/pubmed/28283344 (In some other cancers the treatment is sometimes quite effective. One theory for why it is not in prostate cancer is that while some cancers are homogenous (all tumors are the same) prostate cancers are hetrogenous (tumors mutate into slightly different copies of the original). Jim
  2. Sisira

    STEREOTACTIC RADIATION

    Dear Tim, There's much to appreciate in your post. I like when you say"I have tried to take a pretty proactive and holistic approach to my health. This is very important in managing your prostate cancer. It is not only a case of treating the cancer in an isolated situation. All the same you can't be both proactive and reactive. Plant based diet, exercise daily, yoga, meditation are all good and wise choices. About the diet I think there is no compulsion to be vegan. Simply a heart-healthy well balanced diet is good enough for a prostate cancer patient. Why I had to use the word reactive is because you have started using a whole lot of supplements. Many of these are not backed by sufficient research although you can find enough anecdotes and apparently scientific analysis and tests conducted. Its a big and very profitable market but full of trickery and delusion. For years we were thinking supplements such as green tea, lycopene etc. with high antioxidants will support in the treatment of Prostate cancer and other cancers as well. But today there's enough research which have proved that supplementing with antioxidants from outside the body definitely increase the risk of prostate cancer and its progression. Even vitamin D in higher doses. That is why any of the qualified oncologists don't recommend such things in addition to their main treatment protocols. Sometimes we tend to think that they are not interested in our "holistic" approach. What I appreciated in your holistic approach is not in this sense. It is to ensure the proper metabolic functioning of the whole body to result in a strong body immunity that will in turn support your efforts to deal with your cancer. In your present condition, having seen the rise in your PSA, the treatment strategy namely Radiation you are contemplating may help you. Its a curative treatment but is a focal therapy. So you have to first locate the metastases and they should be accessible for target radiation. Advice given above by Charles ( Chuck ) is a very good guidance. Only systemic treatments ( whole body ) can reach metastatic prostate cancer irrespective of the location where they are growing . Such treatments are varied and depend on your prevailing clinical condition. I saw this video presentation by Dr.Eugene Kwon, a very skillful Urologist working for the Mayo Clinc, couple of years back. In my opinion Treatment of Oligometastatic Prostate Cancer is a myth and is only a business concept leading to very expensive scanning, surgery and radiation by their team. This is based on an unrealistic situation where a PCa patient has less than 4 metastases in a recurrence! And destroying them ! If you can clinically identify even one, obviously there should be hundreds or even more micrometastases that will show up later in the fullness of time. How do they rule out? First micrometastasis with the circulating tumour cells and then the recurrence may involve thousands in proliferation. Once again, oncologists are not turning a blind eye to this type of innovative treatments but they can't experiment with the lives of patients unless you are in an approved Trial. Still you have a good number of treatments in your back pocket, and if you take the proper treatment from a center of excellence, from physicians of excellence, you will definitely be able to hold the bull by its horns. Good luck in your treatment plans! Sisira
  3. Nev Black

    STEREOTACTIC RADIATION

    The link below is what Dr Farshad Foroudi, of the Peter MacCallum Cancer Centre, said at the August monthly telephone meeting in 2013, with men of the Advanced Prostate Cancer Support Group. http://forums.jimjimjimjim.com/topic/782-dr-farshad-foroudi-talks-to-men-with-advanced-prostate-cancer-about-oligometastatic-few-metastases-treatment-minutes-phone-in-23-aug-2013/
  4. pauldhodson

    STEREOTACTIC RADIATION

    Hey Tim, Sounds like you're still doing well. Take a look at this video. I think it's the right one. Dr Kwon talks about the treatment of Oligometastatic PCa and the potential for a remission. Cheers Paul. Her it is:
  5. "There are differing schools of thoughts regarding whether oligometastases represent isolated lesions—where targeted therapy may render a patient disease free—or whether they coexist with micrometastases, where targeted therapy in addition to systemic therapy is required for maximal clinical impact. As such, the approach to the patient with oligometastatic prostate cancer requires multidisciplinary consideration, with surgery, radiotherapy, and systemic therapy potentially of benefit either singularly or in combination. Indeed, mounting evidence suggests durable disease-free intervals and, in some cases, possibly cure, may be achieved with such a multimodal strategy. However, selecting patients that may benefit most from treatment of oligometastases is an ongoing challenge. " Click on this link to read a paper on oligometastatic prostate cancer from the 2016 American Society of Clinical Oncology (ASCO) Scientific Meeting.
  6. Unlike many who have posted their stories in this forum, my journey has only just started. I was diagnosed with prostate cancer in 2012 at age 64. On 15 June 2012 I had a PSA test which returned a result of 28.1. On 12 July 2012 a further PSA test returned a result of 30.1. I then had a biopsy which revealed Gleason 9 cancer. Imaging showed metastasis to the pubic bone. Because the cancer had metastasised, in accordance with current practice, localised treatment of the prostate was not considered as an option by my urologist. I was then placed on Hormone Therapy - initially on Cyprohexal for a short period for flare and then on Eligard. I remained on Eligard injections until mid October 2013 when Firmagon was substituted for Eligard. I am still on Firmagon. Casodex was added at the start of September 2013. In December 2012 I changed my primary medical practitioner from my original urologist to Dr Ben Tran, an excellent medical oncologist. My wife describes Ben as “her favourite doctor”. Most doctors regard prostate cancer as either confined to the prostate gland and curable, or widely metastatic and incurable. In recent years it has been suggested that there is an intermediate stage (oligometastatic) where the cancer has spread outside the prostate gland but is not widespread. In 2004 a study by the University of Rochester in New York documented in detail the existence of oligometastatic disease in prostate cancer metastatic to bone. An appreciable proportion of those with five or fewer lesions remained stable for up to several years before the cancer started to spread widely. Those with more than five bone lesions were much more likely to spread widely. The authors proposed that stereotactic radiation to bone metastases in those with five or fewer may eliminate the bone metastatic cancer and make the patients disease-free for a prolonged period of time. Stereotactic radiation is delivered as a single, high dose, precision treatment which is a radical departure from conventional palliative radiotherapy which is delivered daily for several weeks. Most importantly, stereotactic radiation is potentially curative compared to conventional radiotherapy to such tumours. Ben Tran referred me to Dr Farshad Foroudi, a radiological oncologist at Peter MacCallum Cancer Hospital in Melbourne who is conducting A Pilot study of patients with Oligometastases from Prostate cancer treated with STereotactic Ablative body Radiosurgery (POPSTAR) on patients who had 3 or less metastases. While stereotactic radiation has been used in other cancers as well as for prostate cancer confined to the prostate, this trial is one of the first in patients whose prostate cancer has spread. After scans, it was determined that I would be eligible for the clinical trial but only if I had my prostate treated. Due to the proximity of the metastasis on the pubic bone, treatment of the prostate by radiation was not possible. This meant that surgery was the only way to treat the prostate. I then met with a surgeon, Mr Daniel Moon, to discuss possible surgery. Both Ben Tran and Daniel Moon warned that a radical prostatectomy involved serious potential side effects without any evidence in clinical trials of benefit, albeit that some data suggested favourable results. However, I decided to proceed with the surgery. On Daniel Moon’s recommendation, prior to the surgery I had a number of appointments with a physiotherapist specialising in continence management. [Clinical trials have shown that pre‑operative pelvic floor muscle training improves the recovery of continence after a radical prostatectomy]. On 14 June 2013 I had a robotic laparoscopic radical prostatectomy at Epworth Hospital. Post surgery my catheter remained in for a month; the slower than normal internal healing was probably caused by the fact that my prostate had been very enlarged (130cc). Apart from the delayed removal of the catheter, the operation was a success and I recovered continence almost immediately after the catheter was removed. I cannot speak too highly of the skill and care of Daniel Moon. My PSA, 4.2 before the prostatectomy, was 0.7 in mid July 2013 but then started to rise again. Until the imaging that I received for the POPSTAR trial, I believed that I only had a single metastasis. Apparently my initial scans had also showed metastasis to a lymph node but I was not advised of this. The POPSTAR scans confirmed a lymph node metastasis. On 26 September 2013 and 1 October 2013, following several planning sessions, I received stereotactic body radiation treatment; one session for the lymph node metastasis and one for the pubic bone metastasis. The treatment was very quick and easy and free from side-effects. It can take up to 18 months for cancer cells to die following radiation. As part of the clinical trial, monitoring continues over a 2 year period. I have recently had my 3 month follow-up visit. At the 6 month follow-up visit I will have a further PET scan to examine the impact of the radiation on the tumours. My PSA is now 0.066, down from 1.00 prior to the radiation treatment, and likely to still be falling. All of the cancer sites revealed by imaging have now been treated. Even though it is highly likely that I have in my system micro-metastatic disease which is not detectable by current imaging technologies, I believe that it can only be beneficial to have significantly reduced the cancer load in my system. It’s now a matter of watch and wait. I’m very grateful for the information and support that I have gained from this forum and the monthly teleconference, particularly the suggestions about the role of the different specialists in your medical treatment. I’ve been extremely fortunate with my medical team. All of them are extremely talented, are excellent communicators, are readily accessible between scheduled appointments (by email and phone) and have a collaborative approach. Dr Emily Gianatti, Endocrinologist has recently been added to the team. At times when asking questions of my very long-suffering doctors, I’m surprised that I haven’t received the type of response that Jerome K Jerome got from his doctor (See Chapter 1 of “Three Men in a Boat” at http://www.authorama.com/three-men-in-a-boat-1.html ) [uPDATED 13 May 2014] So much for no side effects from my Stereotactic radiation! About 5 months after my Stereotactic radiation I experienced pain in my groin which was similar to that experienced before my first bone metastasis was diagnosed. 6 months after my Stereotactic radiation I had a F-18 fluoride scan as part of the clinical trial. There was persisting radiotracer uptake at the site of radiation on my pubic bone. This potentially reflected ongoing skeletal repair at the site of radiation, rather than active cancer. It was recommended that the radiation site be monitored in the future with further imaging. There was no indication of new metastatic disease. I then had a C/T Scan which indicated that the lymph nodes that had been radiated had shrunk significantly in size and were now difficult to measure. An MRI has now identified inflammation of the muscles adjacent to the pubic bone, most likely caused by the radiation treatment. This inflammation is now being treated. [uPDATED 8 July 2014] I've just had my 9 month review appointment at Peter MacCallum Cancer Centre following my Stereotactic radiation. I was told that I was the only patient at Peter Mac who had experienced muscle inflammation from Stereotactic radiation (all patients not just PCa patients). I replied that this information was not much comfort to me. The groin is still a bit niggly but it's getting better. I've just done 3 consecutive days in the gym without too much pain. My next appointment at Peter Mac is in 3 month's time when they'll do another lot of bone scans. Just had my 6 monthly review with the endocrinologist. Vitamin D which has been persistently low despite supplementation is now where it should be. Cholesterol is higher than I'd like. Probably this is a result of the groin problems preventing from me doing much exercise. Had a good chat to her about the difference between DEXA and QCT scans for bone density. [uPDATED 16 October 2014] On 30 July 2014 I had an appointment with my medical oncologist. At my request he changed my hormone treatment from monthly Firmagon injections to three monthly Zoladex injections (After 9 months of Firmagon injections I’d had enough of the injection site pain). We discussed whether to stop Casodex but decided to keep going with it at this stage. I discussed with him Snuffy Myers’s comments regarding Metformin. He was happy to prescribe this, subject to my endocrinologist managing the endocrine effects. After discussing the effect of Dihydrotestosterone (DHT) he also added Avodart to my medication. At the start of October 2014 I had Bone and C/T Scans at Peter MacCallum Cancer Centre as part of my 12 month post treatment review. The scans showed things going in the right direction- the 2 sites that had been treated appeared to be free of cancer and there was no new cancer elsewhere. However, the PSA tests were going in the wrong direction – from a nadir of 0.117 in July, it had risen to 0.45. In mid October my medical oncologist requested a PET Scan for me, a PSMA one with the new Gallium68.tracer. He dropped Casodex from my medication. [uPDATED 2 February 2015] At the end of November 2014 I had a PSMA PET Scan which showed up active sites that were not shown on previous imaging: 1 in the left internal iliac node and 2 in the small bilateral posterior iliac bones. Each of these sites is technically treatable with stereotactic radiation but there may be no practical benefit in doing so. Because stereotactic radiation is a relatively new treatment, the radiology oncologists do not know whether treating these sites will delay the progression of my cancer. My case was referred to the multidisciplinary committee for discussion. The multidisciplinary committee decided that treating the new metastases with stereotactic radiation was a reasonable approach. Early in January 2015 I had the set up session for the stereotactic radiation. On 30 January 2015 and 2 February 2015 I had stereotactic radiation on these 3 sites. My PSA before the treatment was 0.89. The PSMA PET Scan also showed a possible recurrence in the prostate bed near the urethra. Sometimes urethras can display PSMA uptake if there is a hold up or pooling of urine which often happens after surgery. If it is a local recurrence, the area is too close to the urethra to use radiation. [uPDATED 26 June 2015] An MRI in May 2015 confirmed that the suspect lesion shown in the PSMA Pet Scan was an actual lesion and showed a new bone met that was not present in the PSMA PET Scan. The Radiology Oncologist said that, whilst the stereotactic radiation had been successful in killing the "weeds" that had grown, it was not stopping more "weeds" from seeding and that systematic treatment was needed now. That's the end of my radiation treatment for the moment so back to the medical oncologist. As I've mentioned in other posts on the forum, I don't think that my disease was truly oligometastatic. [uPDATED 16 October 2015] My oncologist sent me off for bone and CT scans for restaging purposes. At the end of July my PSA was 3.8. Bone Scan shows limited metastatic disease in pelvis and the sternum. My medical oncologist suggested that the systemic treatment should be a clinical trial being run by Jansen or, if not eligible for that trial, chemotherapy. I was unable to complete the trial prerequisites before our overseas holiday In September. From a treatment viewpoint it probably would have been better for cancel the holiday. However we hadn’t had a decent holiday for a while so decided not to cancel the holiday. In early October as soon as we returned from overseas I had further bone and CT scans as part of the assessment for the clinical trial. My PSA had gone up to 16.4. The scans showed that there had been substantial progression in the last 2 months with mets having spread to ribs and spine. On 14 October when I commenced the clinical trial, my PSA was 19.4. The trial is “A Phase 3 Randomized, Placebo-controlled Double-blind Study of JNJ-56021927 in Combination With Abiraterone Acetate and Prednisone Versus Abiraterone Acetate and Prednisone in Subjects With Chemotherapy-naive Metastatic Castration-resistant Prostate Cancer ”( ClinicalTrials.gov Identifier NCT02257736). JNJ-56021927 (formerly called ARN-509) is a drug with a similar action to Enzalutamide. Whichever arm of the trial I am in, I receive Abiraterone Acetate. [Updated 25 June 2016] Within a few days of starting the trial, any bone pain that I had went away. In my first month my PSA dropped by more than 50% (If PSA does not drop more than 50% in the first month, this can be a sign that Abiraterone will not work: http://www.medscape.com/viewarticle/827466_4 ) The only side effect was increased fatigue. My PSA continued to drop for 5 months then started to increase. To fail the trial, the researchers look at 3 things: PSA Progression, Pain Progression and Progression evident from Scans. By the time of my monthly clinical trial tests in June, I had achieved the trifecta. So only 9 months on Abiraterone, rather than the median of 17 months. Bugger! - why am I at the wrong end of the bell curve? What next? Probably chemo. To be continued.
  7. An interesting interview with Professor Steven Joniau during the European Urology Association 2015 Annual Conference earlier this year about Oligometastatic Prostate Cancer. What is the definition of Oligo-metastatic Prostate Cancer? What are the new imaging modalities and how are they going to change the landscape? How does this change the landscape? Is it ready for clinical implementation? Closing remarks and take home message Click on this link to view the video.
  8. Agenda Disclaimer This Community does not give medical advice. No members are authorized to give medical advice. Ask your doctor if you hear anything here that you think may be related to your treatment. Time 9:30am - 11:00am Eastern Standard Time (Queensland) The formal phone-in meeting ends after 90 minutes. The lines are kept open for up to an hour after that for members to informally chat. Daylight savings times Brisbane 9:30am Sydney, Melbourne, Hobart: 10:30am Adelaide, 10:00am Perth 7:30am Winter times Brisbane 9:30am Sydney, Melbourne, Hobart 9:30am Adelaide 9:00am Perth 7:30am Dial in You must dial in - we do NOT dial you. Landline - Anywhere in Australia - 25 cents Phone numbers only available to members in emails. If this is a problem, contact Jim. Mobile phone - only inside these major capital cities - your phone plan cost Perth (mobile call from inside Perth see warning below) Brisbane (mobile call from inside Brisbane see warning below) Sydney (mobile call from inside Sydney see warning below) Canberra (mobile call from inside Canberra see warning below) Melbourne (mobile call from inside Melbourne see warning below) Adelaide (mobile call from inside Adelaide see warning below) Mobile phone warning The costs of mobile calls are nothing to do with the Advanced Prostate Cancer Support Groups or with PCFA. They are between you and your phone provider (Optus, Telstra, Virgin, Vodafone, etc). If you dial one of the capital city numbers given above from a mobile phone, the cost to you will be the cost on your mobile phone plan. If your plan gives you free, or low cost local calls, and you are in one of these cities, it should be free, or a local call. If your plan gives you free, or local cost national calls that should work too. Be sure - call your provider, give the number you might be calling, and check the cost for you to call that number. Speaking time We want many voices to be heard. If you are a member listed to speak below, the chair will probably expect you to take no more than about 5 minutes on presentation so there is plenty of time for others to respond. Special Guest Speakers are invited to speak for 10-15 minutes, then field questions. Guidelines No noise House - radio, TV, computer, pets, other phones, conversation Yourself - mute button, or mouthpiece away from mouth Phone - call waiting off (#43#), Mute button or hang up to leave the room. No mute button? ##4 to mute, ##5 to unmute. Cordless phone - don't carry, put on folded handkerchief to limit reverberation Other calls - Please do NOT use call waiting or another line on the same phone to take another call - members around Australia are left listening to your 'hold' music until you return. Speaker phone Please do NOT use a speaker phone, unless you are very good at keeping it Mute, and at lifting and using the hand piece when you wish to join in the conversation. Mobile phone You will need enough charge for the length of the call, or take the call with your charger plugged in. Speaking Speak clearly into mouthpiece in ordinary voice. Say who you are when signing in, and each time you speak. Listen for the gavel. The Chair may need to interrupt. Help the secretary by later emailing details for the minutes. Restarting You may hang up and sign in again as many times as necessary. Sometimes we may have to restart the meeting - dial in again. With everyone calling at once you may need to try more than once. Apologies Nev will advise. Late starters Maybe you haven't had access to the agenda or you have late breaking news you would like to share. Tell the chairman here at the beginning of the meeting that you would like to speak, and he will fit you in - probably later, perhaps right now if that suits. No expert guest speaker today, so we have: Three interesting things to discuss In the past month or so, three very interesting things have come to light which members may wish to discuss further. 51 doses of chemo and still going strong Member Ian from Western Australia told us that he became castrate resistant more than 5 years ago and has had, so far, 20 doses of Taxotere (docetaxel) and 31 doses of Jevtana (Cabazitaxel). Discussion was cut short by our guest speaker, so some members may have questions. Dr Mark Moyad's chat with us Two hours with a top world expert! I thought it was great. And I thought that Nev Black and Len Wise should get a medal for transcribing it for us! If you were with us at the last meeting, or you have read the full account by Nev and Len, you may wish to discuss something here. The two parts of the account were posted recently, but if you missed them: Click Part 1 Part 2 Dr Eugene Kwon's remarkable YouTube video on treating Oligometastatic disease Metastatic: cancer spread to other parts of the body (often the bones) Oligo: few So: Oligometastatic: just a few metastatic cancers. It turns out that when the first few metastases are found in the body there is a new opportunity to attack the disease. If you watched the video, you may be interested to discuss it here. Paul Edwards posted a link a few days ago, but if you missed the YouTube video: Click https://www.youtube.com/watch?v=NkqizmvqJPo Other new stories or updates Any man who wishes to update us on his progress is welcome to contribute here. Formal end The Chair will declare the formal part of the teleconference closed at his discretion, perhaps around 11am. The teleconference lines will be kept open until at least 11:30 for anyone who wishes to continue discussions, update his health, or just chat. Informal chat Any topic you like - topics we didn't reach, something discussed earlier you wish to comment on, an update on your health, how your new boat is going, moaning about the weather, anything that you wish to say. Future phone-in support group meetings Phone-in meetings are held on the fourth Friday (NOT always the last Friday) of each month (except January (one week late) and December (one week early)). Phone-in support group meeting dates 2015 January 30 (not the fourth Friday) February 27 March 27 April 24 May 22 (not the last Friday) June 26 July 24 (not the last Friday) August 28 September 25 October 23 (not the last Friday) November 27 December 18 (not the fourth Friday) Changes or questions If you wish to update us about any changes in your health or treatment, or have a question you would like answered or discussed, or you would like to talk about joining a teleconference group, let us know. Then we can put it high on the agenda so it doesn't get lost - just reply to this email, or use Contact Jim on JimJimJimJim.com. This message has been send to you because you are a member of an Advanced Prostate Cancer Support Group. Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
  9. Dr Eugene Kwon of the Mayo Clinic describes himself as a someone who is "innovative, who pushes the envelope" and who treats "aggressively." Here is a very interesting talk given by him at the 2014 PCRI Conference. Greater emphasis should be placed on identification and treatment of oligo-mets Treatments should focus on potentially curative and not "palliative" outcomes Available agents and technologies should be combined aggressively to evoke better outcomes Must abandon irrational obsession with one-step palliative approaches that have no prospect of cure and only prolong inevitable failure Click this sentence to watch the talk on YouTube.
  10. The Pilot study of Patients with Oligometastases from Prostate cancer treated with STereotactic Ablative body Radiosurgery (POPSTAR) trial is no longer recruiting. I was at Peter Mac for one of my regular follow-up visits (21 months after stereotactic radiation). No results have been published for this study but apparently some trends are developing. Talking to my radiology oncologist I got the impression that, although the stereotactic radiation had successfully sterilised the metastases being treated, many of the patients (including me) had further metastases develop. There were a few patients who had not had any recurrence after their treatment. Were the patients on the study who progressed after stereotactic radiation truly oligometastatic? Or did we already have the further metastases which did not show up on imaging at the time but are being detected now by improved imaging technology? I’ve recently read a study* which said that it is important to define the true oligometastatic stage and suggests that there are differences between polymetastatic, oligometastatic, or oligo-recurrent disease. The study said that a patient who is oligometastatic on diagnosis is not the same as one who is oligometastatic after treatment. Poly = many. Oligo = few. Improvements in imaging (eg Ga68 PET Scans) are going to make easier in the future to define the true oligometastatic stage. In my opinion (I’m not a doctor) there is a benefit in sterilising known metastases with stereotactic radiation even in cases which are not truly oligometastatic. Although not curative, this treatment reduces cancer load in the body, eliminates a potential source of further metastases and hopefully delays progression of the cancer. My radiology oncologist says that he’d like to think this too but at present we don’t have any evidence. * Oligometastases in prostate cancer: restaging stage IV cancers and new radiotherapy options Moreno et al. Radiation Oncology2014,9:258 http://www.ro-ournal.com/content/9/1/258
  11. Dr Faroudi spoke to the monthly teleconference on 23 August 2013 about the POPSTAR trial. There is another clinical trial regarding stereotactic ablative body radiosurgery for oligometastatic cancer about to begin at the Prostate Cancer Research Centre at Epworth Hospital in Melbourne. Jim Marshall (not a doctor) said ... More on oligometastatic treatment (mostly Dr Snuffy Myers) at: Five or fewer metastases - "durable remission" ... end Jim
  12. Advanced Prostate Cancer monthly phone-in meeting Minutes 27 September 2013 - minutes prepared by Secretary Nev Black. The Minutes of the phone-in meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice. Person #32: One thing might be useful to somebody to know about if I mention it here. Zytiga/Abiraterone has two unusual features when you start out. One is that the PSA response is not necessarily immediate. So if your doctor looks at the first couple of months and it hasn’t come down your doctor is not going to panic at that stage. Secondly on your bone scans when you start off on Abiraterone instead of seeing shrinkage as you do with other treatments in the first month or two apparently it lights up very brightly. Again your doctor knowing that won’t be scared about that. So Person #27: PSA remaining steady isn’t a bad thing. Secretary Minutes for last month will be posted as soon as possible. I apologise for that. Of late I have been leading a hectic lifestyle. Chairman: We haven’t got a guest speaker today. I spoke to Person #42 yesterday and he had his first Zometa infusion on Tuesday and he was in a bit of pain yesterday so Person #42 I might get you to speak first in case you have to go if you don’t mind. Person #42: My oncologist has wanted me have this Zometa treatment for some time because of osteoporosis. I have refused until now. Seeing the cancer has spread into my bones the oncologist said it may assist in slowing the process of the cancer down and may also help slow the PSA. I am against the hormone treatment because I have terrible side effects. I agreed to have the Zometa treatment on Tuesday. Wednesday afternoon and yesterday afternoon I thought I was going to die I felt like I had been hit by a bus. The pain was in every possible bone in my body apart from my ankles. I was very nauseated and I was pretty sick. I feel a bit better this morning. I rang and spoke to the nurse and she said that can be the case. Some people are affected more than others. She said next time I should be fine. I said if there is a next time like that I won’t be having anymore. Person #28: How long did they take over the infusion? Person #42: About 20 minutes. They put in 100mls of sodium and that took 15 – 20 minutes. Then they put in another 100mls of sodium afterwards to flush it through. Person #28: You may want to talk to the nurse next time about slowing down the rate just taking a bit longer. They could double that time and it might make it easier for you. Person #42: Thanks for the tip and I’ll suggest that to them. Person #40: What is the frequency of the Zometa? I know the other day was your first one but is it going to be every four weeks, every six weeks or every eight weeks? Person #42: Every four weeks and he said it is going to go on forever. That worries me a little bit though. I thought I would just like to wait and see what happens before I make such a decision about that. I am still concerned about what the potential side effects were. I had to go for a blood test beforehand which concerned me. I asked the doctor about that and he said it can have an effect on the kidney. We do a blood test before every Zometa treatment. Person #40: It certainly is a side effect. Touch wood I have not had any side effects with Zometa. Initially I started every four weeks and when I changed hospitals the oncologist put it out to every six weeks. You are correct I have also been told I will be on it until the end. Person #42: Why is that? Person #40: It forms a matrix over your long bones. One of the side effects of the hormone therapy especially when you have metastasised to your bones is the bones become weaker and more brittle. It will reduce the chances of a severe fracture. The other advantage for taking it is the worst side effect for hormone therapy when you’ve got the metastases in the bone is spinal compression. If you get spinal compression then you spend the rest of your life in a wheelchair. I think I would certainly try and persevere and hope the side effects reduce. I am sure they will do. As the previous speaker said, ask the nurses to slow down the actual infusion period to say half an hour to 40 minutes that may well help as well. Person #42: Thanks. That’s a lot more evidence that I know about it now than I have heard before. Person #28: I would just add one more point that you may want to explore with the doctor is that the frequency of the administration relates to the dosage - if you have it more closely at intervals then you have correspondingly smaller dosage. The optimum for you might be a matter of balancing the discomfort against the inconvenience of having to go in more often. This is something you should talk to your doctor about. I have heard/read a number of reports of where even weekly with quite small doses can be much more easily tolerated than four weekly. Person #40: One other thing I have read about but I can’t remember the name of it. I believe there is an oral tablet that has the same results. It is obviously not Zometa but it is for the same purpose. Person #42: I have been taking for some time now probably two to three years a powder named Protos [ed: strontium ranelate 2g, script required, Treatment of postmenopausal osteoporosis]. I have been Protos two hours before the evening meal and two hours after and it did help the density the bones. I am happy with the progression of that. That is the main reason why the oncologist has given Zometa to me because he thinks it might slow the progression of the cancer of the bones. Person #28: There is another more recent version of the Bisphosphonate category of Zometa is a second generation Bisphosphonate and I am referring to Denosumab [ED: Denosumab / Prolia and Xgeva] Different people can respond differently to these medications. It is another one you could raise with the doctor. There are a few others that are first generation Bisphosphonates . There are about three. One of them is Aredia [ed:pamidronate]. There are a couple of others. I believe they are not as effective as Zometa. If you get forced into a position of having to compromise or possibly graduate yourself to a more effective third generation Bisphosphonate, that is another possible avenue. You could take it in stages. Person #42: Thank you for that. I will take up your suggestion and ask my doctor to slow down the time and see how I go next time. My next appointment for Zometa infusion is on October 30. Chairman: Person #40: how long does it take for your infusion when you have the Zometa? Person #40: About twenty minutes. They put in a bit of saline solution. Twenty minutes and then a bit more saline, that’s it. The nurses are on the ball and you are in and out in half an hour. If they are busy it takes longer. Chairman: Thank you very much for that and all the best with your Zometa infusions in the future. Person #42: Thank you Chairman: for the opportunity to discuss with fellow members. I feel a little bit happier about it now I guess. Chairman: It would be a big disappointment if you can't go on with that treatment. Person #42: Particularly if it helps the hormone treatment. As you know I have had a bad time with. I am gradually getting tired and more exhausted. I have gotten older very quickly over the last couple of years. Before I had the cancer, although I am 77 now, I was very fit and I could run around doing all sorts of things. Now I am feeling my age and older and I feel it must be the treatment for this cancer. Person #28: Are you still on hormone treatment? Person #42: No because of the effect I have I am currently on intermittent hormone treatment and at the moment I am off. The last PSA was 8.26 so I have been taken off it because at this stage I am responding very well to the hormone treatment. Previously I was on Cosudex I was so ill and disorientated and confused I couldn't even drive a car. So I have come off that. I am just having Zoladex now. The 3.6mg implant once a month and I only had it for three months and my PSA has dropped from 30 down to 8.26. The doctor is going to watch this in relationship to the Zometa. Next time he will give me a pathology request for PSA he will let me know in a couple of months how that is going. Person #28: Your oncologist sounds like he is exactly on the right track. Being on 3 monthly Zoladex and off the Cosudex you will probably find that more comfortable. Person #42: I am pleased you said that because I don't have a very good relationship with him. He doesn't have a very good bedside manner. I consider him to be a pretty good doctor so I I think I will hang in there with him. Person #18: A follow up in regard to last month's guest speaker Dr Farshad Foroudi involved in the ‘POPSTAR’ trial at the Peter MacCallum Centre in Melbourne. I was just wondering whether there is anything similar to that going on more local? Either Brisbane or Sydney? Does anyone have any information on that? Chairman: When Dr James Mackean was with us he said there was a Dr Matthew Foote in Brisbane that did one spot. He is the only one I can recall anyone talking about in Brisbane. One of our members in Melbourne he may be able to give you a bit more of an update Dr Foroudi and there is another place down there I think that does up to five. Is that correct Person #2 Person #2: The trial for up to five at Epworth Hospital has not got under way yet. Were you eligible for the ‘POPSTAR’ trial? Person #48: Dr Foroudi got me to do new scans in Toowoomba, where I had them originally, for a start to see what they showed. It will be April two years since I had metastases in the left pelvis and one in the right pelvis in a lymph node. Since then I have been on two and a half years of continuous hormone therapy. The metastases didn't show up on the latest scans. When I sent Dr Foroudi the results he said we will just have to leave it for now as there is nothing we can do about it at the moment. So that is where that is at. They would have done a more in depth scan in Melbourne if my Toowoomba scan had shown anything there is no question about that. Person #28: I think there will be a lot more use of stereotactic surgery. It is still early days in Australia but it has been happening in the States for a while. It is just a matter if you do happen to have a flare up by then there will be more people offering it and be more established. I think you are in a good place. Person #48: The only thing I am concerned about is, others say it is only minor, but my Testosterone levels have started to rise gradually. While it is only up to 0.8, for me, that is definitely going up. It was less than 0.5 at one stage. Person #28: There is a limit to what they can actually measure. The standard method of Testosterone was only capable of getting down to about 0.4 below that it gets a bit academic. There are more precise methods of doing it which I am about to explore. You may want to ask your doctor what he knows about alternative pathology. Dr Stephen Strum said 0.7 was about the target level. That is a lot less than what other people would regard as the target. So 0.8 is not necessarily a cause for alarm. It depends on whether it continues or not and if it does you may have to call in another alternative hormone suppression agent I would think. Person #48: I couldn’t agree more. When you put all the tests I have had onto a chart the trends from the last three tests is definitely up from a nadir of less than 0.5. The blood tests I had this morning when I get the results next week will either confirm it going up or not. While I realise everyone considers 0.7 or 0.8 in the low stages the trend is what I am looking at rather than an actual number. Person #18: You contacted Dr Foroudi to see if the trial would be a possibility for you. Can you inform us as to what process you went through and what scans were required? Chairman: I can send you an email later so you have his contact details. I decided to hold off contacting Dr Foroudi until after he spoke and that same day I sent him an email. He responded within minutes. I sent the results from tests I had had two years ago, bone scan and CT Abdomen and Pelvis. He just said get another scan straight away and then send him the results, which I did and was more than happy to do. Person #18: I think it would be worth talking to him either by email or going down to see him to see if it is a possibility for me. [ED: the convenor or secretary is happy to supply Dr Foroudi’s email address to members on request] Chairman: Dr Foroudi, he is a maximum of three metastases and Epworth Hospital, Melbourne talking about five metastases. Person #40: With your possible rise with your testosterone presumably you are going to the same pathology lab? Person #48: I have all my tests done at Sullivan and Nicolaides. I want to see PSA levels less than 0.01. That is just a mental thing for me. There is no rise in my PSA just the testosterone. Person #40: It may be just a glitch in the system. I had a red blood cell count that was way out recently and then in three weeks’ time I had another blood test and it was normal. It was normal before and perhaps they screwed up in the testing. Person #28: I have my second appointment with Dr Foroudi in the next ten days so I will be able to report back at our next meeting. I am chasing down a string of lymph nodes on the left hand side which has been responding well to Zytiga and hormone therapy. I just want to get an updated PET scan. They did a sodium fluoride PET scan and found no bone metastases which I was happy about. They need to do a follow up PET/CT Scan and I will have that in November. Person #42: I can get my GP to request a testosterone blood test can’t I. Chairman: Yes. Person #42: I had a bone scan and it showed metastases not only in my sacrum but also in most of my ribs. So before I started Zometa I requested another bone scan and there are no metastases evident in the ribs. Suggesting it is worse in the sacrum and not in the ribs. Their report suggests I may have had trauma to the ribs at the previous bone scan. How reliable is the bone scan? Person #28: Traditional bone scan will only detect bone metastases when the PSA is at around 20 [ed: search: PMCID: PMC3665151] and probably the same with the CT scans. They are not sensitive to very small metastases. You may want to look at getting the sodium fluoride PET/CT scan as it is much more sensitive to picking up the bone metastases and if you would like to track the direction the metastases are going in response to the hormone therapy then that may be an alternative you could explore. Person #2: I have been through the preliminary scans with Dr Foroudi. Yesterday I had my first stereotactic radiation treatment. Really the only side effect that I have had is a bit of fatigue. I have two sessions left, one on my pubic bone and one on a lymph node. One session for each of the metastases. With the scanning, as well as MRI, sodium fluoride PET/CT scan and then a scan to look more specifically at the lymph nodes to see what is happening with them. I have had fairly detailed scans before I started. They put me on a bean bag which they sucked all the air out of to mould in to my body shape. Then on the table they wrapped me in plastic which they also suck the air out of to stop movement. With a pen they marked and got me all lined up. Then they went away to plan how they were going to do the treatment. That was to be the mock up version but then I was offered the treatment so I had 30 minutes of radiation. Chairman: We will await your results with great interest and wish you well. Person #40: I would like to know if anyone has had any dealings with the PA Hospital Brisbane Multidisciplinary Team which specialises in advanced metastatic prostate cancer as a patient? I am enquiring as to whether anyone in the group has been referred to them, been treated by them or had their case reviewed by them? Person #45: I am with the PA Hospital and their team looks after me. I just recently had a bone scan and they asked me to come in for a CT scan and I get the results Monday. Person #40: Were you referred directly to the PA by another oncologist? I am up in Toowoomba and I asked my oncologist to have my case reviewed there and he said there was nothing they could do as I was past care. I said with all due respect they just specialise in treatment of advanced prostate cancer where you are a generalist. Were you transferred or did you go there straight away? Person #45: Initially when I was diagnosed with prostate cancer Dr John Preston at Greenslopes he was the surgeon. The cancer is in my bones so I could not have surgery it would not have done any good. Somehow I did get to the PA Hospital. I don’t know whether I was referred there. I went there initially to check out if I could handle my situation and then it went from there. Person #32: Oligometastatic treatment is the treatment of fewer metastases. If you are in Brisbane and looking for someone to do that beside Dr Matthew Foote, another man I spoke to went to Dr Paul Eliadis, who, while stressing the investigative nature of this treatment, referred the man to a radiation oncologist for it. This treatment is available in Brisbane and we can help you get in contact with Dr Paul Eliadis. On the Bisphosphonates, Zometa and Denosumab [ed: Denosumab eg Prolia and Xgeva] are in a league by themselves. They are very good for the purpose of protecting against metastatic damage that may damage your spine or other bones. The other Bisphosphonates that have been mentioned the tablets and the powders they will strengthen your bones generally and be effective in keeping your bones strong if you are on hormone treatment. They are two different kettles of fish. Chairman: I neglected to call Person #13 apology earlier. He made a posting on the website recently, Prostvac ‘trial too risky for me’. A couple of years ago there was an article in the prostate cancer newsletter in Queensland, August 2011. It talked about Prostvac and how it was going to be years away before it would be available as a trial. It is now available as a trial. Does anyone have anything to add to that or have any knowledge of this trial? It is available in Brisbane for guys with metastatic cancer. It is a vaccine. Person #13 his PSA was 90 and he said it was far too risky for him. He did not want a placebo because of where he was at. A number of men are on a placebo and he was not going to run the risk so he has gone straight to chemotherapy. He has had one infusion of chemotherapy and has another infusion this coming week. Just wondering if anyone may have anything to add about Prostvac? Person #28: Prostvac is a vaccine approach which has been in the trial setting for some time. It shows some promise. I don’t think it is quite up there with Provenge, the blood transfusion system, they have in the United States. It is still in the phase three trials in various places around the world. It is still on the table beyond that I can’t add any specific Australian trials. You would have to Google it. Person #32: I looked at Google and found no reference to it for availability in Brisbane. The trial I looked at it tells you have got to have the vaccination to smallpox and without it you can’t do the trial. Chemotherapy rules you out and not have the smallpox vaccination rules you out also. Person #42: The oncologist told me the other day Zometa is really soft chemotherapy. Would you guys agree with that? Person #32: Yes, Zometa possibly does have some anti-cancer effect. [ed: Keeping you from spinal or other bone breakages may also possibly you alive longer, certainly with higher quality of life.] Person #28: Epworth stereotactic radiation oncologist is Dr Patrick Bowden. Person #40: You mentioned the smallpox vaccination. How long does a smallpox vaccination last for, do you have any idea? Person #32: It lasts you for life. As smallpox was abolished by the vaccinations, the vaccine is no longer available. Person #28: Have you heard anything about pre chemotherapy Zytiga? Whether there is any approach being made by the Pharmaceutical Benefits Advisory Committee [PBAC] about registering it for that purpose and secondly have you heard anything in a similar way about Enzalutamide (Xtandi), its standing? If not is there something we should be doing to stir the pot? Person #28: PCFA to follow on with from what we did earlier on the post chemotherapy use of Zytiga. Has the manufacturer lodged any request on the PBAC for that treatment they use? I am wondering now if it would be a good time to point out the fact that it has been approved in the United States and Europe for pre-chemotherapy use for some time now. It is obviously very effective and should be very cost effective from the government’s point of view. I am just wondering if we should be getting out there and making a noise about it. Person #32: Although it is extremely expensive. Under the guidelines of how many healthy years of life something gives you for your dollar it should be very good. I agree that is something we should start. Person #28: Similarly with Xtandi, same argument really. We don’t have approval for post chemotherapy with Xtandi at this point. The trial that should be ready by now MSKCC [ed: Memorial Sloan Kettering Cancer Centre] in the States but they are looking at the two uses in conjunction, Zytiga and Xtandi. That seems to me to be the state of the art in advanced prostate cancer. Chairman: Alpharadin [ed: Xofigo or Radium 223] has been approved in America as well. Person #32: There has been an approach made by Bayer for approval of Alpharadin in Australia. Person #28: That earlier discussion we had about Zometa and Denosumab, Alpharadin fits directly into that same metastases scene. Anyone able to get onto a trial with Alpharadin advanced bone metastases would be well advised to do it I think. Whatever we can do to push the argument to getting it approved here can only help. Person #2: As well as all my other clinical trials, I have been on a trial run out of Queensland with the QLD Cancer Council and Griffith University on mindfulness and well being for cancer patients. Basically meditation but I found that quite useful. Chairman: We had a guest speaker on the teleconference late last year on this subject from the Queensland Cancer Council. [ed: Teleconference 21 December 2012, from the cancer council Rob McDowall was the guest speaker. Rob can be reached on: (07) 3634 5314 Tarlee’s number is (07) 3634 5324 Looking for participants for ‘Living well with Prostate Cancer’. This project built around the mindfulness meditation?] Person #28: I have also participated in that trial but unfortunately I got onto the placebo side. I take it you got onto the active side? PauI Hobson: I got onto the active side, yes. Chairman: When you are on a control, do they just leave you there or when they see there is nothing happening you don’t get the real thing eventually? Person #28: Well the control in this case was providing educational material. Of minor value I guess. They do ask a lot of questions on questionnaires. There have been I think three of those during the period of the time. The range of answers that you give represents the control data in a sense if you add everyone on that side of the trial together so they have got some basis for determining whether there are positive results from the active side. Person #2: I think the main difference was that with the control group got all the materials which included CD’s of meditation. The active group as well as given those materials and the CD’s we have also had eight weekly sessions with a psychologist leading the meditations. The control group had meditation material but not someone telling them how to do it. The active group we had a weekly teleconference/meditation by the telephone. Person #28: I have not received meditation CD’s. Person #2: The Cancer Council does have those meditation CD’s available and they will send them out to you. Person #32: To answer your question generally it depends on the trials design. Some trials, when it is clear you are failing will switch you over to the real treatment. Other trials will not. When they are designing the trial this is a big factor for them to take into account. If they are going to let men who fail the first treatment change over as soon as they fail the difference between the two treatments clearly, you have got to run the trial usually longer and there’s a lot more people. Mostly they don’t want to do that so that they can get a result quickly and start selling their drugs quickly but if the drugs are already selling or they need to adapt people to it they might say yes we will let you switch over. Sometimes yes sometimes no, it is in the fine print. Person #45: Wasn’t there another vaccine other than Prostvac. I seem to recall checking it out on the internet. Person #32: There is some early research I think at the Mater aimed towards a vaccine, but no results yet. Person #28: I just one other I remembered on the list of items for dealing with bone metastases and that is a product called Sprycel [ed: dasatinib tablet]. There are trials going on with that also along with the other trials mentioned. Although the Alpharadin trial is pretty much concluded now, successfully, but Sprycel is another candidate. Seems to be beneficial and another one to add to the list of possibilities. [ed: Snuffy Myers: "Let me emphasize first of all that Sprycel is an iffy drug for prostate cancer that I would use in certain special circum- stances, so it's not something that I'd recommend for everyone, only after a special evaluation."] Chairman: There certainly is potential to have a lot more different treatments now than what there was ten to fifteen years ago. Members agree but we need a cure. Person #28: I think with metastatic cancer if you can keep on buying time there will be a continuous flow of things that will buy you more time and by the end of it you will die of something else. We have a disease that needs to be managed. One thing we could talk about at a future meeting perhaps is exactly what we know scientifically about diet, supplements and exercise. There are a range of views on which supplements are good and which are not. There is always a heap of advice around so maybe this a topic for discussion. Members agree. Jim Marshall: There will be an email coming out shortly asking for what topics you would like to see discussed. What would be the most valuable to others and themselves? There are many tasks that make the group and the website work better that I do not have enough time for. There are many tasks that can be handed out to people who wanted to some work. One of the tasks is to go through Dr [snuffy] Myer’s videos and do a synoptic. There are a number of those over the years and he recently did a video on Sprycel. So if there are men willing or anyone can volunteer that is one of the jobs. One of the general tasks would be to go through which articles that are still very current. Many of these things are made available in the United States beginning in 2006 and one of the groups divided their survival data up and the guys who were diagnosed after 2006 lived significantly longer. Lots of research for the near future. Jim Marshall: We are thinking about creating a ‘drop in any time page’ where men could volunteer if someone is in their area to call and see them or have a cup of coffee. This will go up shortly. Person #10: I did get to talk to my specialist up in Cairns a week ago and he advised me that when Gleason score went from a 9 to a 10 that the window of opportunity to possibly cure the cancer had gone. They said they would still try it and brought the radiation forward a month to November. The good news is my PSA is down to 0.33 which meant the Zoladex is now controlling the cancer and they can help me through the next few years. He didn’t seem to think the radiation would cure my cancer. I had to understand that the Zoladex could keep me going for quite a few years. Some good news there. Person #28: There is an arbitrary cut off where they talk about curable and incurable. It really should termed as low risk, intimidate risk and high risk it would be a better way to discuss it. None of these cuts offs by any means sharp or applicable for every individual. They do use PSA in one of those and I think far more important is the response of the PSA to the treatment. If you can drive the PSA down to less than 0.5 by using hormone deprivation then it is certainly premature to say that it is incurable. If you can’t get the minimum PSA down to those sorts of levels then the chances are that it is a management process rather than a curing process. These are not sharp delineations these numbers. Much more important to look at how low you can drive it then if it then starts to rise again the rate at which that rises occurring. If it is occurring rapidly it is more serious than if it is occurring very slowly. Beware of that and talk to your doctor. Person #45: Does anyone on the line know anything about the Ketogenic diet? I know it is an alternative diet and I have discussed it with a nutritionist at the PA Hospital. I know it is not a cure. I believe they do use it in young kids for epilepsy. It is related to a low carb diet. Person #28: Dr ‘Snuffy’ Myers promotes the Mediterranean diet. Person #32: The Mediterranean diet is the most likely to help you. Chairman: The next face to face meeting at Greenbank RSL will be on the 9 November 2013 at 11.30 am. Person #42: For the train buffs. The ‘Sunlander’ service, Brisbane to Cairns, finishes early next year. The Minutes of the phone-in meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice. Reminder: Face to Face Luncheon Greenbank RSL Saturday Nov 9 2013 at 11.30 am.
  13. stevecavill

    Thoughts appreciated

    Hi Jeremy, if there is literally one visible bone met, that is referred to as oligometastatic disease. there is good evidence that SBRT (stereotactic body radiation therapy) can treat that. I would speak to a radiation oncologist. Saying "too small to deal with" makes no sense to me again all. Good luck, Steve
  14. Minutes: Advanced Prostate Group Meeting August 23 2013 Courtesy of Secretary Nev Black These Minutes of the phone-in meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice. Guest Speaker Dr Farshad Foroudi Chairman Bruce Introduces Person #2 to tell the group his story. Person #2 I live in Cairns and have been here for 44 years. I am aged 66.My brother 6 years older than me was diagnosed 2 years ago with prostate cancer but it was only very low risk and he has just kept on a watch. That made me realise I needed to go more regularly to have a check-up. I had been in September 2012 and my PSA was 2.1.I went back to the doctor in December and it had gone to 2.3. He did a digital at that stage and said it was enlarged. In early January I went back and it was 6.9.That is when he sent me to a specialist at the Mater Hospital they contacted me and said we are very concerned with how quick this is going we want you to go and have another blood test and urine test. The results came back 3 days later and it has gone to 14.9.They booked me in for a biopsy and then have a talk to my specialist. Yours is a high priority and we need to do something immediately. Early April I had the biopsy; my doctor contacted me to say I needed to see him ASAP. He proceeded to tell me I had prostate cancer. My Gleason score was 9 and there was cancer in 9 out of the 12 cores. The following day I had an abdominal scan and then a bone scan they all came back ok. Towards the end of April I went back to the Mater and saw a Dr who works with My Specialist. He explained surgery was no longer an option as it has already left the prostate. Before we can do anything we need to do a TURP because your kidneys are already starting to become infected because I wasn’t urinating very often. In the meantime I went onto Hormone Treatment, 2 weeks of Cosudex then I went onto Zoladex. After four weeks of treatment the PSA had gone from 14.9 down to 0.93. That means that’s all working. I had the TURP operation early June. In mid-June I went and saw a Doctor who is a consultant radiologist in Cairns. We now have one of the most modern radiation set ups in cancer clinics. The Doctor went right through and discussed 3 gold seeds that would be implanted into me and I will be having radiation for 8 weeks. At that stage nobody told me I would have to have hormone treatment for 6 months prior to that or maybe I had missed that. End of June I had a phone call from the prostate cancer nurse in Brisbane and she rings regularly to check if I am alright and she said we did not expect to find any cancer after the TURP but we have. This is not good for you at all it has pushed your Gleason Score up to 5 + 5. I haven’t been able to find anybody to talk to who has had a 4+5 or a 5 +5. The only thing I discovered was on the internet where an American doctor had a 4 + 5 and he said 9 is the worst of the worst. Which basically left me in a bit of a tizz because I thought hell if that was the worst of the worst what’s a 10. I found that quite difficult. Then 3 weeks ago I ended up in hospital for 7 days I was having chronic breathing problems. All the way through from the day I took the hormones, and I have had an implant again yesterday, I get absolute chronic fatigue. I cannot even wash a car. I can’t do little things I have done for years. I was driving home one day and I couldn’t breathe. I pulled over and people called an ambulance. I had a 7 day stint in hospital. My Specialist explained occasionally androgen deprivation therapy can cause unexplained shortness of breath and that helped a lot. They have a cancer psychologist and he specialises in shortness of breath and fatigue. He has been wonderful for me. He gave me a good talking to that I had not accepted that I have cancer. Now I am waiting until the middle of this month to find out what the plan is. So when I was going to hopefully start the seeds in September they now talking mid-October and radiation in January 2014. That is where I am. I really appreciate the hospital, the nurses and the people who have done so much to make sure I am getting through this and family and friends obviously. The Cancer Council put me on to www.jimjimjimjim.com Jim has been an amazing help he rang me and put me on to talking to you people. That is my story. Chairman Bruce Does anyone have any information they can offer to Person #2? Person #33 I have advanced metastatic prostate cancer and I suffer from extreme lethargy and fatigue. Like you I can’t wash the car or split logs or sometimes even open a bottle of whisky which was very frustrating for a Scotsman. What I do is go to hydro therapy twice a week. I find it really good for keeping the joints subtle and having a good workout as well was walking every day. Keeping up the exercises is obviously very important. Good luck with your journey mate. Person #2 Thanks. I do struggle walking. I can open a top off the bottle of scotch but struggle with a can of beer. Person #43 Just like you I was diagnosed with a Gleeson 9 in 12 out of 12 cores The amount of volume in that was between 80 – 100%. I have been on hormone therapy and been down the path you are about to take with the radiotherapy. There is life after all this, you may not think so at the moment but there is. I have a question for you, your side effects with the hormone therapy you mentioned you are getting Zoladex are you also on a daily antiandrogen pill as well? Person #2 No they only gave me that for 2 weeks when I first started and 2 weeks when I had the implants after. Person #43 I was going to say if you are on the antiandrogen as well as the injection you may find the antiandrogen could be causing most of your problems like I did. I am only quoting my experience here. I have gotten to the stage where I tolerate the side effects. I agree with what you are saying but I am tolerating them reasonably ok these days. I just wanted you to know that you are not alone there with your diagnosis and I am certainly not either. You look around the group and other places overseas you will find a lot of people very much in the same sort of boat. Person #2 I am so glad to hear from someone like you. When the cancer foundation put me onto Jim I couldn’t believe the help that was out there and the support. It is alright to have support from family and friends but they don’t understand what you are actually going through. I must admit the hormones have knocked the hell out of me. I get the hot sweats at night time. Person #35 I would just like to let you know that I have a Gleason score of 9 and I had exactly the same problem as you with the hormones, terrible. I was diagnosed 6 years ago and they gave me 3 years to live. I am still here 6 years on. As far as the hot flushes are concerned providing you are taking those supporting tablets like Cosudex or whatever you will eventually nab it to a certain degree. I had exactly the same problem as you. My suggestion is to keep up the exercise that is absolutely important. It doesn’t matter how hard it is to do, do it. Because if you do it that does help. Make sure you have adequate rest through the day. In other words if you are exhausted after breakfast sit in a chair for 20 minutes and have a sleep after lunch and so on. If you do that you get a little bit of reprieve to carry on with the rest of the day. Your hot flushes will never go away unfortunately. All the best to you. You are in my thoughts. Person #2 Thanks I am doing very well with that side of it. I have learnt lately that I need to sit down and rest and I need to tell people that I can’t talk anymore, I can’t go there, I just can’t go there. Since I have been going to the psychologist he has been an amazing help to me. I am thankful for that side of it. He calls it cancer related fatigue. Person #21 Just a comment on the night sweats. One of the things that may help is making sure you have your evening meal pretty early and try and go pretty light particularly at that end of the day on carbohydrates because at the end of it all it turns into heat and if you are not exercising that heat has got to go somewhere and it comes out of the skin and makes you feel horrible. That is just one small point. The other one is having a fan near you is quite helpful. If you get a hot sweat you can just peel the sheet back and expose your chest, throat and head where a lot of the blood vessels are close to the surface and that helps to knock it back pretty quickly. Person #3 I hate to use the term to keep a positive mental attitude although that is correct. Living your life of happiness and well-being is probably one of the best things you can do and don’t worry too much. Worrying is not going to fix it. It is not going to help. I am 80 years old and am in my fourteenth year of survival. I went one year without anything when I changed medical oncologist and it was a year before anything took place really except Lucrin every 3 months. I stayed on that. I was on Zometa every once a month, that is all. Sometimes I wonder how important a PSA reading is I was well over the 3000 mark at one stage and felt great. How do you explain that? Person #2 I honestly don’t know. A lot times I cannot explain what is happening. I don’t understand a lot of it. I am getting there. Person #3 I am off Zometa now and have got a new one that is called Denosumab, the one that I am on now, also known as Xgeva and Prolia. There are some side effects you can have but I have been on it for a month and I am having my second injection this afternoon. I haven’t noticed any of the side effects. That is a new one, has anybody struck it yet? I know it better by Xgeva. Chairman Bruce Person #32 had a point to make we are getting close to 10 o’clock for the guest speaker. Person #32 Person #2, just a quick one. I’ve got Gleeson 8 cancer and have been on continuous hormone treatment for 10 years now. I understand what you are saying about the side effects. If you are going to remain on hormone treatment for an extended period it is quite important that you make sure you get your bone density aspects checked from time to time. My endocrinologist and as well as my oncologist and they have recommended a couple of other injections once or twice earlier on but also maintaining proper vitamin D and calcium levels in the system. If you are going to be on hormone treatment for an extended period like me, more than a year or something like that then you need to make sure that aspect is being looked after for you as well. Person #2 Thanks for that because that is one area the nurse made quite clear to me that I need to get into the vitamin D and calcium and have regular bone check-ups. Person #21 Just a quick one. I am not sure whether the oncologist mentioned it but one of the other diagnostic techniques that might be relevant for you is a PET/CT scan. This scan is able to detect a pretty early stage soft tissue prostate cancer if it has metastasised to particularly lymph nodes that could be elsewhere. If you are getting negative bone scans it depends on the technique if it is a conventional bone scan it isn’t very sensitive unless your PSA is up well above 20. There is a PET/CT scan also for bones which they use a different contrast agent. It might be worth discussing those two possibilities as it may have a bearing on what’s the optimum treatment. Person #2 Thanks I have been told I will be on hormone treatment for probably 3 to 4 years. I know I have got to keep a very close eye on the bones in particular. Person #21 It is also soft tissue you have got to be aware of too. Not least the lymph node involvement or other and the earlier if you are in that situation then the earlier you can pick that up, as I am sure you will find from the guest speaker we are about to hear, the better. Chairman Bruce Welcome aboard Dr Farshad Foroudi Dr Farshad Foroudi I have been listening for a little while and you have a very good support group going on. So we have got a study open called ‘POPSTAR’. Which is the formal title pilot study of patients with oligometastases from prostate cancer to be treated with stereotactic ablative Radiosurgery. Oligometastases, oligo means few and we have defined that up to 3 metastases. The rationale of the study is basically the technology over the last few years has evolved so that we can actually give very high of radiotherapy with precision to the metastatic lesions particularly involved in bone. As well as the lymph nodes and soft tissue. It was originally developed prominently for lung cancer, in prostate as well as breast cancer there are increasing numbers of studies internationally. Most patients when they get metastatic disease they are put on hormone treatment but actually by ablating the metastases we have the possibility of getting rid of the largest bulk of the tumour remaining. There may be immunological benefits because when you destroy cancer cells the breakdown the body’s immune system may be able to recognise that and that might have implications for disease elsewhere. That is an area that may need to be studied. The study which is funded by the PCFA (Prostate Cancer Foundation of Australia) involves patients if they are thought to have between 1 and 3 metastases in the prostate cancer and along as the primary has been treated with either surgery or radiotherapy. There then maybe potential for the study. We organise a sodium fluoride test as well as a bone scan. We complete staging investigations and if there are concerns that there is only 1 to 3 metastases the treatment basically involves a number of questionnaires patients have to fill in. To see how they feel, pain before treatment. The majority of people, we have treated 8 or 9 so far in this study and all except one patient was actually pain free to start with. It tends to be a good indication that have been picked up with the PSA rising and the scans picking up lesions. We have also had a couple of patients where they are just presented with the prostate cancer they have got the prostate in situ as well as the metastatic lesions. In those cases it is suggested that the prostate be treated first and then review the patient with a scan after that. The treatment involves a radiotherapy planning scan. This is where the men lie on a CT scanner, they have a customised vacuum (blue bag) and this is around the body to stop movement and the CT is carried out. We then mark out the area we want to treat and the radiation therapist works out how many beams we use. About a week later the patient comes for their second visit. They come and have what we call a ‘mock-up’. Where the patient is on the treatment machine and we see if the treatment is technologically possible that there is no misalignment and all the positions are correct. If that is all okay a couple of days later the actual treatment takes place and it is a single treatment. It takes between half an hour and 40 minutes. It seems like a long time ,and it is a long time but the majority of the time is in positioning the patient because we want to make it as accurate as possible. The man’s position, he has the vacuum immobilisation and a combined CT scan is taken and that takes the majority of the time. The actual treatment is done in 3 to 4 minutes. As the technology is getting faster that component it is getting quicker also. It is still likely even as technology changes it is still got to be at least 25 minutes. Longer than traditional radiotherapy but the advantage it is a one off treatment as opposed to the prostate treated which can often be 37- 39 treatments. We then see the patient a couple of weeks later and we have another PET scan at 3 months and then one 18 months after treatment. The results locally are too early to say. Internationally stereotactic treatment has been used for brain lesions for 25 – 30 years with very good control. That tends not to be in prostate cancer but in other malignancies. There are four studies looking at patients who have got lesions that have spread metastases from the prostate treated with this technique published. They have all sort of shown that either hormone treatment can be delayed or the lesions basically don’t progress. We have a study for thirty patients then we will evaluate the results. ‘inaudible’ Person #39 My husband has prostate cancer do you accept people on your ‘POPSTAR’ trial that have had prior ADT? Dr Foroudi Yes we do. Some of the patients may have not had ADT but the majority have had ADT. We allow both androgen sensitive patients as well as those patients where the hormones aren’t working anymore. It is an entire continuum the main thing is the actual number of lesions. It has to be 3 or less. Person #38 I had some metastasised black spots to the bone. They didn’t give me radiation until I started getting a little bit of pain. The first spot I had radiation on they did that for one day with a single dose. The two future ones were over 5 days. How do they determine to do one dose or the 5 doses over the 5 days? Dr Foroudi You would have had conventional palliative radiotherapy and that’s what we have been doing for 20 to 30 years. With the radiation the main aim is to get rid of pain in the bone. What you received in the 5 treatments is what most doctors would be doing. This new study is quite different as we are aiming to get rid of the cancer deposits. We are treating patients who have the deposits but without the bone pain. It depends on where. What we are doing is a part of the study it is ethics approved and it is a funded study. It is basically seeing if it prolongs survival and the things that we hope it does. It seems technically possible and overseas studies look promising. Person #38 I had a tumour in my spine that they shrunk and then gave me 5 low doses on that. Dr Foroudi With the 5 doses the single treatment if you try and convert them it is about 3 to 4 times the actual dose. So it is what we call an ablative. It gets rid of everything. So it has got a different purpose. Person #32 What is the difference between the stereotactic radiation that you are talking about and the normal radiation. Is the stereotactic radiation or the one you are using when you do the radiation very much more precise radiation than normal you would be able to get? Does that mean you can go anywhere in the body and use that with safety compared to normal radiation? Is the stereotactic more or less effective in getting rid of the tumours? Dr Foroudi The evidence with the stereotactic is that it is better at getting rid of the tumours. It involves much higher precision than what we have been traditionally able to do. It involves pre-treatment with CT’s, information is better, immobilisation – stopping the movement is better. Basically it is a non-invasive, high precision form of radiotherapy. We are using that in patients who have up to 3 tumours that have spread from the prostate to bone or lymph nodes. There are some limitations such for instance if it is right next to a big piece of bowel that may have technical limitations. Certainly compared to conventional radiotherapy you can do a lot more. Person #38 When I mentioned the tumour in the upper section my spine after my first chemotherapy dose I ended up with a blockage in my throat. I had to go to hospital because I could not eat for 3 days. I couldn’t pass food. They said it had to do with the radiation I had on my spine affected my oesophagus. Dr Foroudi Traditional radiotherapy because of the way they angle it particularly if it is coming from the back. It goes through the spine and some of your oesophagus does get a dose. You can have some discomfort on swallowing but that is generally for a short period. I assume it would be a week or two. Person #21 On the technical side of the process I am wondering how the technique side of the process compares too particularly with what is going on in the US by Doctor Michael Dattoli. [Ed: Dr Myers video 21 December 2011] He uses real time imagining and gauging of the radiation to cope with breathing and so on. Can you comment on some of the technology that is available to you at Peter Mac and how it compares to the best of what is around elsewhere? Dr Foroudi There are a couple of different competing plans. We have gating but we normally only use this for lung lesions it is not basically a way of taking risk relation into account. It is not such an issue for bones or lesions in the pelvis. It is more of an issue if you are treating the liver or a lung lesion. This isn’t something we generally do for prostate cancer. For prostate cancer when it spreads it is predominantly to lymph nodes and bones. We generally don’t need to use that technology. We have the technology available but it is not something that would benefit prostate lesions. Most places in Australia use a linear accelerator based system. All of the capital cities would have various active treatment equipment available. Perth at the Charles Gardner have put in a cyberknife. This is a specific stereotactic piece of equipment. It has some benefits and some disadvantages compared to other forms of treatment. Sydney has a couple of centres to have their equipment. In Melbourne we obviously have it. The Alfred also. The Royal Adelaide does only brain lesions. In 15 years I have only seen one patient with prostate cancer where there are lesions on the brain. Most prostate cancer goes to bone or lymph nodes. That is what we are aiming at in our study. All of the published studies have been either bone or lymph nodes or a mix of the two. Person #21 With the lymph nodes targets it tends to be sitting along the arteries or the major veins in the abdomen and pelvis. I was just wondering if there are any constraints with precision in those sorts of locations? Dr Foroudi The veins and arteries are not a problem. Person #21 I was wondering if there were any constraints with precision in those sorts of locations? Dr Foroudi The veins and arteries are not a problem with the technique. The bowel potentially can be. So if there is a lymph node with a large amount of bowel around it, it may be technically not possible to do the treatment. If it is just vessels, fat or surrounding soft tissue which is pre progressive issue none of the studies have shown problems with that. Person #25 Is RapidArc a stereotactic? Dr Foroudi RapidArc is just a way of delivering the radiotherapy. It is used in stereotactic treatment and we also use IMRT and RapidArc to treat primary prostate, cervical cancer and lymph nodes. It is a technique that is useful to use in the stereotactic treatment. If you are having RapidArc treatment it does not necessarily mean it is stereotactic treatment. Stereotactic treatment is very precise and very few treatments. If you have been prescribed 5 treatments or 39 treatments it is highly unlikely to be stereotactic treatment. If it is 1 or sometimes up to 3 it is more likely to be stereotactic. ? What does it actually look like? Is it a gun that can go in any direction into the body as opposed to the normal one which is a big circle around you? Dr Foroudi - I don’t know how many people online who have had radiotherapy using a linear accelerator. It looks like similar equipment with extra bits on the side, the imaging and the software technology is slightly different, designed differently. You lie on the same sort of couch and have the immobilisation. The machine can take imaging and can treat from multiple angles. We normally use between 8 and 12 angles. More traditional treatment like the palliative treatments normally just uses one angle. It is quite a different form of radiotherapy. Far more precise and far more focussed. It is also resource intensive that is why we only treat people with up to 3 lesions. You go with the patients with the greatest benefits and that is why the study is designed to treat one two or three lesions. Chairman Bruce There well may be a linear accelerator which is about a point, and the turntable for the couch also takes around that point, so that when a part of the patient is situated on that point, then you hope the machine with its accuracy within 1 mm in its precision then a beam of 2 mm with a 1mm target in the middle of it. All these treatments I guess are a bit larger than that. Dr Foroudi that is a great explanation. With the more modern machines they generally have the accuracy of the eye to centre often 1mm. Some of them take .2 and .5. We have a limitation the fields can’t be anymore smaller than 3cm. Below that our computer systems don’t work very accurately. Even if the tumour or lymph nodes is only 1x2cm we do have to treat a bit of the surrounding area to make sure we are treating it accurately and that our systems can cope with it. In a field that is smaller than conventional palliative treatment is often 10 to 15cm by 10cm it is quite a different volume of tumour we are treating with the high dose. Our aim is to get rid of the tumour and we hope there are some benefits with antigens in terms of the cancer breakdown and the immune system. This is still investigational. Person #38 Why can’t stereotactic radiation be applied to the prostate? Dr Foroudi It can. There are a number of studies looking at doing that I have seen published overseas. The problems myself and my colleagues find with the ablative treatment we are getting rid of the cells in that bag. Even though you are trying to get rid of the cancer in the prostate there is the urethra which is important and leads to the bladder and allows for the urine to pass out. You don’t want to damage that. If you ablate the prostate we worry about the long terms effects on the urethra which is right in the middle of all that. There are about 5 or 6 studies where they have used a mix of external beam radiotherapy and then stereotactic as a boost. There are another series of studies where they have just used stereotactic treatment. Most of them have been more than one treatment but it has been stereotactic treatment to treat the primary prostate. In fact we have written a review article of that and sent it to the local Australian and New Zealand Journal of Medical Radiation Oncology for review. So it is a technique that is possible. It is not one that we have been using. There is a planned study originating from Newcastle, NSW that we may join looking at a mixture of external beam radiotherapy, for four and a bit weeks and then two stereotactic treatments for the prostate. We think that might be a little better in terms for the urethra. More than just doing the whole stereotactic treatment and having the urethra in stereotactic treatment. Member #30 Why do you have a limit of three metastases? Dr Foroudi Some centres in the United States do five. As the metastases get greater in numbers it is suggested there are more and more of these that we cannot see. So we chose patients that are going to benefit from the stereotactic treatment. The treatment does take time and resources. In the trial we try to find a group to get the greatest benefit. Potentially in a few years’ time we may be treat larger numbers of metastases. Person #43 With the radiotherapy treatment, I went through IMRT last December at that time it was mentioned to me there is a maximum dose you can have during radiotherapy treatment and then possibly palliative radiation would not be an option after that. Does that hold true with the stereotactic treatment you are talking about? Dr Foroudi Yes there is a limit to the dose of radiotherapy that can be delivered to any particular body part. So we have to take into account if the patient has had previous treatment. With the stereotactic treatment it is quite localised. If someone had the prostate treated, lesions not right next to the prostate we are able to treat. Treatment involving the prostate is well targeted these days. If there is a lesion in the spine it has to be well away from the radiotherapy field. The lymph nodes would be outside the radiotherapy field. We have had one patient so far where the bone lesion was in the pelvis, in the bone near the prostate. We used a limit of 40 gray to that area and we could not treat that lesion. It generally is possible if you have had radiotherapy to the prostate to get treatment elsewhere provided it is not too close to the very high dose that the prostate would have received. Person #43 My second question there is I understand this is a study that is being done at the moment and the ability to get this treatment is very limited at the moment. Do any of the centres with the linear accelerator be able to do this treatment or will it be specialised in one or two hospitals in the capital cities? Dr Foroudi The equipment is becoming more and more widely available. Most of the departments when they replace or provide at least two or three machines would be looking at getting the equipment. It not only has a role in prostate cancer it also includes lung cancer, melanoma and potentially breast cancer lesions when it spreads. At the moment only a few centres offer it. We are doing it as a trial. There is no cost associated with the treatment. It is all covered by the hospital and the study. In terms of the equipment it does have a cost and most departments over the next few years when they replace equipment will get equipment capable of doing it then. In most of the capitals at the moment there would be at least one or two departments particularly Royal North Shore and Saint Alfred’s, Peter Mac and the Alfred. (Some of the hospital names the Dr Foroudi listed were (inaudible) Person #25 I understand you have other studies coming up and we would like to hear about them. Dr Foroudi I treat neurological cancers. As mentioned earlier we are doing the prostate cancer ‘POPSTAR’ trial. Described as treating metastases that have spread, one to three. We also have a study which is originating from Newcastle called ‘prometheus’ which will be patients who have high risk prostate cancer that hasn’t spread. Where they get a mixture of standard external beam and then two stereotactic treatments. That is currently going through ethics interstate and it is hopefully it will open here at the end of the year. That potentially has the chance of improving local control to the prostate. That again will be a fairly early study. Those are the two stereotactic studies for prostate. We also have one for kidney cancer. We still have a study called ‘RAVES’ which is looking at patients who have had surgery and high risk features such as positive margins or seminal vesicles involvement. Looking at whether radiotherapy immediately afterwards or radiotherapy delayed when the PSA starts rising which is better. That has enrolled 270 men and needs 400 to be completed. There also is another study we are hoping to open probably early next year which is looking at the addition of another hormone called Enzalutamide to patients who are going onto have hormone treatment for either locally advanced or metastatic prostate cancer. That study is not open at the time of the teleconference. Person #25 Why is it thought that different treatments might prime the immune system? Dr Foroudi It has been quite well known that sometimes if you treat one lesion, lesions elsewhere may disappear. We don’t know the mechanism behind this is and we think it is immune related. It is an area of research. Even our unit is working with an immunologist and we are hoping to get some studies up where patients have treatment and we see that can prime the immune system. When the treatment happens the cells die and bits of the cells are released and the surrounding immune cells may be active and produce an adherent immune reaction. The question is whether that happens enough without any additional treatment. There are medications that can potentiate the action. It might also be the action in the future having both the stereotactic treatment and an immune potentiating drug. That is something looking very exciting. Stereotactic treatment you treat what is visible and get rid of the tumour and also release come antigens which the immune system will react to. It is still very much investigational. We are linking with the labs to look at it here. Not so much in prostate cancer but in melanoma particularly internationally their doing a fair deal of work. We are hoping to show similar things prostate cancer. ? Is there any evidence that already happens with prostate cancer with Brachytherapy and high density beam radiation? Dr Foroudi There isn’t great evidence at the moment with the primary. But when the primary is treated it is not an ablative dose compared to the stereotactic treatment With the stereotactic treatment even we have seen some cases in patients with lung cancer where we have treated a lung cancer nodule and another nodule has disappeared. The question is whether the same things happen in prostate cancer. It has also been documented in melanoma. (Inaudible) Person #21 The ideal of debulking particularly even if the primary cancer. Possibly of metastases also I had understood was related to simply setting it back on its exponential growth path so it has to start all over. Is basically not that it is an immune response that triggers? Dr Foroudi We hope that it is both. First getting rid of the largest bulk is true. The new is one is what we hope is something that we will find and show in the future. At the moment it is all very anecdotal. People have treated a patient and they have treated one or two lesions and the other lesions have disappeared. There is more evidence at the moment for debulking, getting rid of the largest bulk. The immune potentiating effect needs to be proven and shown. Person #41 Is the ‘POPSTAR’ trial still open for new participants? If it is how do I get onto it? Dr Foroudi – We have enrolled eight of the 30 patients. It has been open for three months. It is only a single institution study. It is only open at Peter Mac, East Melbourne. If you contact me you can organise an appointment to be seen. I ideally hope that once this study is finished sometime in a year or two probably more likely to be two years to have a multi-site study. One which is run in multiple cities and multiple states. At the moment we need to finish the pilot study and see what its results are and then look at the bigger study. Anyone interested can either contact me through Peter Mac or I can give Jim my email address. It has to be a selective group of patients. The main thing is one to three metastases. Ideally with the primary already having been treated. We can organise treatment of the primary but we find it easier for us if the primary has already been treated by surgery or radiotherapy in the past. Chairman Bruce Thanks Dr Farshad Foroudi for the informative presentation to the group. Jim_Marshall We will put your contact details on our website and send it out to all members. Thank you very much Dr Foroudi. Dr Foroudi It has been a pleasure and I am happy to be contacted. The study is looking for recruits. Jim_Marshall Introduces Person #4 to talk. Person #4 I am from Central Queensland and I am coming up to 67 years this year. It all started with an employer funded annual medical check-up which included PSA prior to my retirement in 2010. The results of a January 2011 test showed a marked increase in PSA. A DRE and Trus biopsy was conducted. The results were an aggressive cancer and a 9 Gleason score. Bone scans and CT scans followed and showed the cancer had metastasised in the bone. Radical prostate removal was ruled out. Hormone treatment Eligard three monthly was started in March 2011. Follow up PSA showed a decrease in the level and indicated the treatment was working. Bone and CT scans showed slight decreases in bone metastases and shrinking of the prostate tumours. December 2011 the PSA started rising which meant the cancer became resistant to the hormone treatment. There was hope to get on a trial of MDV3100 but one of the criteria used for this was the PSA had to be below two. Eligibility ruled out that trial. By May 2012 my PSA had risen to 4.6. A bone scan indicated increase cancer in the bone. Chemotherapy via a trial called ‘inaudible’ which started in May 2012 and out of the three doses I managed to get Cabazitaxel and that proceeded on a three weekly basis in Brisbane at the Wesley Hospital. By November 2012 I started to have blood in the urine. By mid-November chemotherapy was stopped due to the bleeding. PSA had stabilised. I went through eight cycles of treatment. During those treatments I needed to self-inject Neulasta (pegfilgrastim) to keep my white blood cells from going too low. At that stage I also started Xgeva for bone strengthening. PSA was monitored on a monthly cycle. February 2013 showed minor increases in the metastases. The doctor reviewed in April 2013 and recommended another treatment. He had some samples of Zytiga. I am not sure behind the reasoning apart from hoping it would go onto the PBS but he started me on one tablet per day on a full stomach, with a review after six weeks. The CT scan in April showed progression in the metastases. After six weeks on Zytiga my PSA had dropped from 3.8 to 0.44. At the trial meet week mark PSA was at 0.20. At the eighteenth week mark the PSA was 0.11 which was around August and Zytiga was now on the PBS. I am now on the four tablets of Zytiga on an empty stomach with Prednisone, 5mls a day twice a day. I also have to have a potassium supplement as it pushes potassium low. Blood pressure has gone high a lot higher than normal so I am still trying to get this down. That is to be continued now. That is where I am at. Person #21 What a great story. Person #43 Did they continue with the Eligard as well as the Zytiga? Person #4 Yes, Eligard three monthly. Yes I am on both. I will be on it for the rest of my life. Person #21 I would just like to clarify an earlier point that you made the original Zytiga was one tablet on a full stomach. That is something I haven’t heard of before. I gather the effect of that it increases your absorption. Was that a conscious thing the doctor explained to you? Person #4 I was at the stage where I needed new treatment and the offer was would you like to try Zytiga at this rate. Taken on a full stomach. As you can see by the figures it is very exciting. I did ask him when I went on to the full dose. Why am I going onto the full dose? The one pattern that works and he tried to explain along the lines of the peaks of the medication being very sudden and I do not know what that has got to do with the cancer but the dose rate being with it peaking rather early than with the fall. It would peak but at a slower rate and it would take a while for that peak to drop back. I don’t really understand the reasoning. I was not using the prednisone with the Zytiga initially, but I am now. My GP who is trying to get my blood pressure under control looked at the chemistry of it all and said I need to be on prednisone to try and get my blood pressure under control as well. Person #38 Is taking the four tablets safer or taking the one with the meal? Person #25 Dr Snuffy Myers has spoken about this and is publishing material in the next week or two. It multiplies the effect of the drug if you have it with food. It can be quite a dangerous drug if not kept under control. Anybody taking it with food would need to be aware that there are some risks with that. Person #4 My medical oncologist may not have explain it that way but it was an option to have Zytiga in a less costly way until it become available on the PBS. Person #3 I was on Zytiga for nearly 12 months. It has been interesting to hear your story. Mine was one hour before or four hours after. It was four of those capsules daily. Quite different to yours on a full stomach. Person #21 Just a quick one, mine is also related to Zytiga indirectly. I had the interesting experience of two things happening at once. I was a ADT3 which included an anti-androgen, Cosudex with Zoladex. I went off the antiandrogen in terms of eligibility for a trial on Zytiga I was getting three consecutive rises above two so was not eligible at the time. Subsequently I went back onto an antiandrogen in the form of Nilutamide which is one of the three major options which I had not tried before. I was using that at the same time I was trialling Zytiga. The effect was the PSA rose rather sharply from three and a half to about six and a half within a month or so. My medical oncologist was away overseas so I took it upon myself to stop the Nilutamide. I was aware that there was a response called the anti-androgen withdrawal response where the smart little critters inside the nucleus of a prostate cancer cell learn how to adapt to anti-androgens and use them as a food rather than a poison. The effect was dramatic as soon as I came off the Nilutamide the PSA dropped sharply back to where it was previously. I am still on Zytiga plus Zoladex and am waiting the next exciting episode of the PSA. The phenomenon of sometimes withdrawing an antiandrogen in this case Nilutamide at least in the context of Zytiga seems to give it the elbow room so it can do its job. So just be aware of the phenomena that may be something to talk to your doctors about if you are in that position. Person #25 Another phenomenon you should be aware of with treatment, that some patients don’t expect, in the men who have had successful treatments with it, the PSA doesn’t initially drop. Another explanation may be you have reached the stage where the PSA does drop with Zytiga. As I said it doesn’t drop immediately. The second phenomenon is in the bone scan. Most other successful treatments you can sometimes see the tumours shrink down in the bone scans. With Zytiga with successful treatment apparently the scans light up immediately. Person #21 In my cases there not bone metastases but lymph node metastases. Due to Dr Foroudi’s POPSTAR trial, as a candidate, I got the opportunity to look at the bone metastases and there are none. On first look the lymph node metastases pretty well shrunken except one or two. I hope they will shrink or that I can jump onto stereotactic. One or the other. Person #38 I am on Zoladex. I was on Nilutamide for a while and then they took me off it because they said it wasn’t working. It might be the same reason you were taken off because the cancer was using it as a food. Person #21 Like Jim said it sometimes hard to see up the causes from the effects. In my case I was on Zytiga for a couple of months the effect of that in conjunction at that time with Nilutamide was a sharp increase not just a stabilisation. I mean a doubling in a space of a couple of months. That is a pretty sharp doubling rate and the halving rate you calculate coinciding with the elimination of Nilutamide in that context was equally as dramatic. I think it is an indication of the withdrawal effect, not a guarantee. I have been on Zytiga for quite some time and I am particularly happy with it. I will be on it until it ceases to be effective. At the moment all the trends are good. Meeting Closed. These Minutes of the phone-in meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice. Reminder for men and their partners in northern NSW or southern Qld: Face to Face Luncheon Greenbank RSL Saturday Nov 9 2013 at 11.30 am.
  15. While this link is for treatment of OligoMetastatic disease it also contains a refreshing approach to ongoing treatment of Advanced metastatic disease - worth a look. OligoMetastatic Prostate Cancer Disease with Dr. Eugene Kwon from the Mayo Clinic. Just click on the link or copy and paste it into your browser https://www.youtube.com/watch?feature=player_embedded&v=NkqizmvqJPo
  16. Associate Professor Michael Hofman from Peter MacCallum Cancer Centre in Melbourne appears to agree with Snuffy Myers's point of view that you treat oligometastatic disease differently from disease which is not oligometastatic. In a paper delivered last week at the Annual Scientific Meeting of the Clinical Oncologists Society of Australia he said: "No imaging technique, however, can detect micrometastatic disease or predict which patients have circulating tumour cells that are destined to seed. Therefore, whilst improvement in imaging technology is a valuable advance, it can also provide false hope by introducing lead time bias and detecting disease at an earlier stage without changing outcome. This may direct patients to interventions with curative intent that are ultimately futile and cause significant morbidity. To minimise this, in addition to utilising PET/CT with the most appropriate radiotracer, a period of observation is recommended before defining patients with asymptomatic disease as oligometastatic."
  17. Jim Marshall (not a doctor) said ... Following some success with other cancers, doctors are keen to investigate whether men with just a few prostate cancer metastases will respond to an aggressive treatment to the metastases while they are in an early stage. The researcher leading such a study, Dr Farshad Foroudi, will be our guest on our next phone-in meeting. He will explain the treatment of oligometastatic disease, the trial he leads (POPSTAR, details below), and planned trials. At least one of our members is involved in the trial at Sir Peter MacCallum Department of Oncology (PeterMac) in Melbourne. That meeting will be on Friday 23 August 2013, 9:30 am eastern states, 10:00 am Adelaide, 7:30 am Perth. ... end Jim Protocol Number: 12/162 Protocol: POPSTAR: A Pilot Sudy of patients with Oligometastases from Prostate cancer treated with Stereotactic Ablative Body Radiosurgery Sponsor: Peter MacCallum Cancer Centre Investigator: Dr Farshad Foroudi Study Coordinators: Lisa Selbie (9895 7528 Wed/Fri) / (9656 3626 Tue/Thurs) lisa.selbie@petermac.org Hypothesis The hypothesis is that stereotactic ablative body radiosurgery (SABR) is feasible and safe for patients with oligometastatic prostate cancer. Primary Objective ➘ To assess the feasibility and tolerability of SABR in prostate cancer patients with oligometastatic prostate cancer (up to 3 bone or lymph node metastases) Secondary Objectives ➘ to assess acute toxicity to estimate effectiveness of treatment to estimate the quality of life of patients before and after SABR to estimate the pain rating before and after SABR to determine changes in PSA following SABR Exploratory/Tertiary Objective ➘ To assess Na‐18F‐PET in patient selection and response assessment to SABR Inclusion Criteria ➘ Age 18 years or older ➘ Has provided written informed consent for participation in this trial ➘ Histological or cytologically confirmed prostate cancer ➘ Primary prostate cancer controlled (or planned to be) by surgery or radical radiotherapy ➘ Bone Scan or CT Scan evidence of 1 to 3 metastases (Bone or Lymph node) ➘ Androgen sensitive and castration‐resistant prostate cancer ➘ An ECOG performance status score of 2 or less ➘ Life expectancy greater than 12 months ➘ Available for follow up Exclusion Criteria ➘ Previous high dose radiotherapy (BED>40Gy) to the area to be treated ➘ Visceral Metastases (e.g. liver, lung or brain) ➘ Chemotherapy within +/‐ 3 weeks of SABR ➘ Any change in hormonal therapy regimen within 6 weeks prior to SABR ➘ Evidence of Spinal Cord Compression ➘ Lesion involving the skull ➘ Spinal Instability Neoplastic Score ≥ 7 unless lesion reviewed by a neurosurgical service and considered stable. ➘ Long bone Mirels score ≥ 7 unless reviewed by an orthopaedic service and considered stable ➘ Surgical fixation of lesion required for stability Treatment Plan Radiation Therapy Treatment 20Gy in 1 fraction delivered to each metastatic site Chemotherapy Treatment No concurrent chemotherapy will be administered within 3 weeks of planned SABR Other Drug Treatment Hormonal therapy provided it has been instituted at least 6 weeks before SABR will be allowed. Follow-up Schedule Patients will be followed up at 1 month post treatment, then 3 monthly thereafter for 2 years. Other Comments The following assessments must be done within 8 weeks prior to Registration: Confirmation of eligibility Disease site and staging investigations CT neck/chest/abdo/pelvis Whole body bone scan CT extremity (if lesion is on extremity) Medical History ECOG Physical examination Weight/height Haematology Urea/creatinine PSA/Testosterone Spinal Instability Score &/or Mirels score if applicable The following assessments must be done within 2 weeks prior to SABR: Quality of Life Questionnaires Numerical Pain Rating Score Adverse event/toxicity Assessment Na-F18 PET scan RECIST measurements to be recorded All patients should receive their SABR treatment within 8 weeks of Registration This may not be the latest version. Please refer to full current approved version of protocol for more information.
  18. GALLIUM68 PSMA (Prostate Specific Membrane Antigen) PET/CT SCAN. or BE CAREFUL WHAT YOU ASK FOR. Having recently undergone the above scan due to the alarming rate of my PSA recurrence, and to perhaps qualify for a current Oligometastatic trial in Melbourne, I got, perhaps, more than I bargained for. Hoping to identify possible activity in the para-aortic lymph node region, which has been mentioned since diagnoses (and later ruled unlikely), which then perhaps was able to be treated with targeted radiation. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=363885 Indeed, this was found-“Malignant PSMA avid small left common iliac node,” but also “small or tiny left distal common iliac nodes (beneath iliopsoas muscle) {left hip} and enlarged left inguinal {groin} node.” {red italics are my interpretations} Unfortunately, it also identified four other sites of PCa activity in my bones, which puts me right into the metatastic club, not somewhere I wanted to be. I personally am comfortable with what I now know, but suggest that this level of knowledge may not suit all who are travelling this path. The Gallium68 PSMA scan, is, I believe the best tool I have seen for identifying areas of PCa activity with great accuracy, and is not limited to areas of bone degeneration, as is the current bone scan. However, until these areas can be treated in Australia (as in the above trial) as they have been able to in the US for the last 15 years, the knowledge is perhaps, wasted.
  19. In the last few years there have been significant developments in both the imaging of, and radiation techniques for, prostate cancer. Improved imaging techniques mean that metastases can be identified at an earlier stage. Improved radiation techniques mean that these metastases can be targeted. "Standard imaging techniques such as technetium bone scan , CT scans and MRI are usually unable to see tiny recurrent tumors. On the other hand, PET scans that work by exploiting various aspects of cancer metabolism, can often visualize and locate these small tumors. Knowing the location of a cancer recurrence is important since recurrence in or near the pelvic lymph nodes may be amenable to additional curative focal therapy. " - Dr Fabio Almeida, Director, Arizona Molecular Imaging Center in the Prostate Cancer Research Institute Insight Newsletter February 2015, Vol. 18 No.1 "I think the concept of oligometastatic disease, which basically means limited metastatic disease, is very important. If a man has metastatic disease everywhere, the disease is not going to be curable. But if one has a few well-defined lesions, the radiation oncologist can target these lesions with very little damage to the surrounding tissue ....... There is great hope for men with limited metastatic disease." Dr. Reginald Dusing, a diagnostic radiologist at the University of Kansas Hospital in Dr “Snuffy” Myers Prostate Forum Newsletter Volume 16 Number 12. There are a number of members of this forum (including TerryC and me) who have had cancerous lymph nodes in the pelvic area successfully ablated by stereotactic radiation. You may wish to investigate using stereotactic radiation to treat the lesions on the lymph nodes identified by your PSMA PET Scan. Because stereotactic radiation is so highly focused, there is a lower rate of patient-reported adverse outcomes and a high rate of oncological control than older forms of radiation treatment. Whilst stereotactic radiation has been used for some time with other types of cancer, its use for prostate cancer is not yet standard treatment. If having stereotactic radiation, in my opinion, it is important to choose a radiology oncologist who has significant experience with stereotactic radiation (for example, the radiology oncologists at the Peter MacCallum Cancer Centre in Melbourne have significant experience gained through extensive involvement in clinical trials). I don’t how much experience your current radiology oncologist has had with stereotactic radiation. You may want to get a second opinion from a radiology oncologist who is experienced with stereotactic radiation. If such localised treatment of the pelvic lymph nodes is successful, you may be able to avoid systemic treatment such as Androgen Deprivation Therapy. The side effects of Androgen Deprivation Therapy are not pleasant and, in my opinion, should be avoided if at all possible. If you try localised treatment of the pelvic lymph nodes, it may not be successful. As your urologist suggests, the spots on the lymph nodes may be the tip of the iceberg – you may already have micro-metastases circulating in your blood stream which cannot be seen by imaging If localised treatment of the pelvic lymph nodes is not successful, you still have Androgen Deprivation Therapy available. You mention that you had radiation treatment 7 years ago. Depending the extent and dose of that previous radiation, it may not be possible to have stereotactic radiation to the pelvic lymph nodes. Disclaimer: Please recognize that I am not a Medical Doctor and am not giving advice. You should not rely on these comments in making decisions about your prostate cancer. You should form your own views on these matters after making your own enquiries and research and after discussing them with the doctors providing your prostate cancer care.
  20. Agenda Disclaimer This Community does not give medical advice. No members are authorized to give medical advice. Ask your doctor if you hear anything here that you think may be related to your treatment. Time 9:30am - 11:00am Eastern Standard Time (Queensland) The formal phone-in meeting ends after 90 minutes. The lines are kept open for an hour after that for members to informally chat. Daylight savings times Brisbane 9:30am Sydney, Melbourne, Hobart: 10:30am Adelaide, 10:00am Perth 7:30am Winter times Brisbane 9:30am Sydney, Melbourne, Hobart 9:30am Adelaide 9:00am Perth 7:30am Dial in You must dial in - we do NOT dial you. Full details in email only. Need help? Contact Jim. Speaking time We want many voices to be heard. If you are a member listed to speak below, the chair will probably expect you to take no more than about 5 minutes on presentation so there is plenty of time for others to respond. Special Guest Speakers are invited to speak for 10-15 minutes, then field questions. Apologies Pat Coughlan, Noel Preston, Paul Hobson, Geoff Buttfield Late starters Maybe you haven't had access to the agenda or you have late breaking news you would like to share. Tell the chairman here at the beginning of the meeting that you would like to speak, and he will fit you in probably later, perhaps right now if that suits. No longer alone In that haze that is our diagnosis, some of us found ourselves hoping that the doctor had made a mistake somewhere. Peter Renwick of Cairns found on each visit that not only had his diagnosis been correct, but each new visit gave new bad news. PSA rising rapidly, Gleason score upgraded from 9 to 10 ... Peter will tell us his story. Special expert guest speaker Those of our members who are not yet widely metastatic to bones or other organs have a keen interest in oligometastatic treatment. That is the treatment of the first few metastases, when significantly slowing the disease may be possible. Today's expert guest - Dr Farshad Foroudi is running a trial looking at just that, called POPSTAR. Two of our Melbourne members are currently engaged with Dr Foroudi about involvement in the trial. None of our members outside Melbourne have been offered this experimental treatment. One of our members sought it in Brisbane, but was initially denied by his medical oncologist. The doctor later, after talking to a colleague, relented, and arranged the treatment. We look forward to hearing from Dr Foroudi about treatment of oligometastatic disease, his current trial, and those he has planned. Other updates Any man who wishes to update us on his progress is welcome to contribute here. Formal end The Chair will declare the formal part of the teleconference closed at his discretion, perhaps around 11am. The teleconference lines will be kept open until at least 11:30 for anyone who wishes to continue discussions, update his health, or just chat. Informal chat Any topic you like - topics we didn't reach, something discussed earlier you wish to comment on, an update on your health, how your new boat is going, moaning about the weather, anything that you wish to say. Future phone-in support group meetings Teleconference meetings are held on the fourth Friday (NOT always the last Friday) of each month (except January, which is one week late) and December (which is one week early). So February may have 2 teleconferences - the delayed January teleconference, and the normal fourth week. In 2013 this means teleconferences on both 1 February and 22 February. Phone-in support group meeting dates 2013 1 February 2013 22 February 2013 22 March 2013 (not last Friday in month) 26 April 2013 24 May 2013 (not last Friday in month) 28 June 2013 26 July 2013 23 August 2013 (not last Friday in month) 27 September 2013 25 October 2013 22 November 2013 (not last Friday in month) 20 December 2013 (not last Friday in month, not fourth Friday in month) Changes or questions If you wish to update us about any changes in your health or treatment, or have a question you would like answered or discussed, or you would like to talk about joining a teleconference group, let us know. Then we can put it high on the agenda so it doesn't get lost - just reply to this email, or use Contact Jim on JimJimJimJim.com. This message has been send to you because you are a member of an Advanced Prostate Cancer Support Group. Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
  21. Agenda Disclaimer This Community does not give medical advice. No members are authorized to give medical advice. Ask your doctor if you hear anything here that you think may be related to your treatment. Time 9:30am - 11:00am Eastern Standard Time (Queensland) The formal phone-in meeting ends after 90 minutes. The lines are kept open for an hour after that for members to informally chat. Daylight savings times Brisbane 9:30am Sydney, Melbourne, Hobart: 10:30am Adelaide, 10:00am Perth 7:30am Winter times Brisbane 9:30am Sydney, Melbourne, Hobart 9:30am Adelaide 9:00am Perth 7:30am Dial in You must dial in - we do NOT dial you. Email only. Contact Jim if this is a problem. Speaking time We want many voices to be heard. If you are a member listed to speak below, the chair will probably expect you to take no more than about 5 minutes on presentation so there is plenty of time for others to respond. Special Guest Speakers are invited to speak for 10-15 minutes, then field questions. Apologies Pat Coughlan, Noel Preston, Paul Hobson, Geoff Buttfield Late starters Maybe you haven't had access to the agenda or you have late breaking news you would like to share. Tell the chairman here at the beginning of the meeting that you would like to speak, and he will fit you in probably later, perhaps right now if that suits. No longer alone In that haze that is our diagnosis, some of us found ourselves hoping that the doctor had made a mistake somewhere. Peter Renwick of Cairns found on each visit that not only had his diagnosis been correct, but each new visit gave new bad news. PSA rising rapidly, Gleason score upgraded from 9 to 10 ... Peter will tell us his story. Special expert guest speaker Those of our members who are not yet widely metastatic to bones or other organs have a keen interest in oligometastatic treatment. That is the treatment of the first few metastases, when significantly slowing the disease may be possible. Today's expert guest - Dr Farshad Foroudi is running a trial looking at just that, called POPSTAR. Two of our Melbourne members are currently engaged with Dr Foroudi about involvement in the trial. None of our members outside Melbourne have been offered this experimental treatment. One of our members sought it in Brisbane, but was initially denied by his medical oncologist. The doctor later, after talking to a colleague, relented, and arranged the treatment. We look forward to hearing from Dr Foroudi about treatment of oligometastatic disease, his current trial, and those he has planned. Other updates Any man who wishes to update us on his progress is welcome to contribute here. Formal end The Chair will declare the formal part of the teleconference closed at his discretion, perhaps around 11am. The teleconference lines will be kept open until at least 11:30 for anyone who wishes to continue discussions, update his health, or just chat. Informal chat Any topic you like - topics we didn't reach, something discussed earlier you wish to comment on, an update on your health, how your new boat is going, moaning about the weather, anything that you wish to say. Future phone-in support group meetings Teleconference meetings are held on the fourth Friday (NOT always the last Friday) of each month (except January, which is one week late) and December (which is one week early). So February may have 2 teleconferences - the delayed January teleconference, and the normal fourth week. In 2013 this means teleconferences on both 1 February and 22 February. Phone-in support group meeting dates 2013 1 February 2013 22 February 2013 22 March 2013 (not last Friday in month) 26 April 2013 24 May 2013 (not last Friday in month) 28 June 2013 26 July 2013 23 August 2013 (not last Friday in month) 27 September 2013 25 October 2013 22 November 2013 (not last Friday in month) 20 December 2013 (not last Friday in month, not fourth Friday in month) Changes or questions If you wish to update us about any changes in your health or treatment, or have a question you would like answered or discussed, or you would like to talk about joining a teleconference group, let us know. Then we can put it high on the agenda so it doesn't get lost - just reply to this email, or use Contact Jim on JimJimJimJim.com. This message has been send to you because you are a member of an Advanced Prostate Cancer Support Group. Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
  22. Thanks to Nev for these Minutes Advanced Prostate Group Phone-in Meeting 24 April 2015. These Minutes of the Telephone Meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice. Guest Speaker: Dr David Wong Chairman Bruce: Good morning all and welcome. Jim Marshall: Today we are going to hear about forms of scanning that can identify very small amounts of prostate cancer. The PSMA Gallium 68 Test and by coincidence member Person #3 is going to have that test this afternoon. Person #3 will tell us a bit about his story now and then we will hear from the doctor about the test. Hopefully he can tell us the results when we come to the next meeting. Person #3: Good morning everybody. My PSA in March was 14. My radiation oncologist suggested that I have a PSMA (Prostate Specific Membrane Antigen) pet scan which might identify where the cancer is but also whether in fact it might not be being affected by the Zoladex. Following the implant in March he put me on Cosudex and a week ago today I had my PSMA test. I am seeing the specialist this afternoon to get the results of that test. I had surgery in 2000. I started radiation when my PSA went up to four in 2004. My PSA was monitored between then and 2009 when I started on Zoladex. I have been on and off Zoladex for those six years. On this particular course I received my Zoladex in December 2014 and then I had the next implant in March of this year. My PSA went from 14 in March down to 3.7 in April and my Testosterone has stayed fairly low. I went from 0.5 in March to 0.3 in April. So quite obvious the Cosudex is working well with the Zoladex for which I am grateful. Chairman Bruce: Thank you. We await developments with test results. Person #3: Yes I will get the results and at our next teleconference I will give everybody those results of my PSMA test. Person #5: Do you have to pay for your PSMA scan? Two members at our local support group had to each pay seven hundred dollars. Person #3: It was billed on Medicare. I see Dr Doe at the Nepean Cancer Care Centre and he also works at Westmead. I had the test done in the Nepean Public Hospital and I have not had to pay anything. I will find out from Dr Doe this afternoon how it is paid for and I will let everybody know at the next teleconference. Person #4: I had to pay $1,000.00 and I was told it was not covered. Jim Marshall: As far as I know I haven’t heard that medicare's paying for any of these scans. I guess that is a question for Dr Wong: in a few minutes. Chairman Bruce: The possibility is, if it was done in a hospital, it might have been covered by hospital costs as opposed to a private service in a hospital. That is conjecture we will find the answer in due course. Person #5: On that same topic I spoke to the Royal Women’s and Children's Hospital in Brisbane where you can get it done and I was advised there was no cost because it is a public hospital and bulked billed. Whereas at the Wesley you have to pay for it. However with respect to if the cancer has spread to the bones and your oncologist/radiation oncologist know that then it is highly unlikely they will allow you to have a PET scan or a Gallium 68 PSMA PET scan because they know that it has spread to the bones and they don’t want to muddy the waters with other types of scans if you have been having a nuclear bone scan for a period of time like in my case. Person #3: A week ago last Wednesday I had a full bone scan and with the same thing it was done at the nuclear medicine department of the public hospital. Jim Marshall: Update from the Senate Inquiry. I spoke at the Inquiry from about three o’clock to about four o’clock in the afternoon. They had sessions through the day. At one of those sessions the pharmacist people who had put in submissions had to explain to the Inquiry why there are two classes of pain for drugs in public hospitals and private hospitals. I didn’t really understand their answer. I gather it is, private hospitals can do some procedures that public hospitals can’t, but in general the costs are the same. Rather than speak for anytime now this morning, on the website the original posting about me being called before the Senate has been supplemented with more information (as replies). The original posting gave the submissions to the group. The submission we put to the Senate Inquiry in was contributions from a number of members, particularly a large amount of work from Paul Hobson and Alan Barlee. Those two members also supported me in getting ready for the Senate Inquiry. At the Senate Inquiry you are given a suggested five minutes for an introductory opening statement. I chose not to say very much in the opening statement except give them a list of the questions that I would like to be asked. It turns out that was a very wise move. There turned out to be six other people in the group, some of them spoke longer than the suggested five minutes of their opening statements and some of them in reply to questions. One particular professor took a long time with his answers. So because I had asked those questions deliberately in my short introduction they were placed on as questions on notice and we were able to get that information entered. The opening statement and the answers to questions on notice are both posted on the website that you can see. My strategy was to speak off the cuff rather than reading from a prepared statement and my measure of how successful of what I was saying was whether important members of the committee were taking notes or not. If I saw they weren’t paying attention then I tossed in something like ‘men in Australia live 3.3 years longer than men in the USA’. As soon as you see someone taking a note then you know someone is listening to you. I felt that we got a very good hearing overall when you take into account the questions without notice. I think by concentrating on just a few points we had more chance of action being taken on what we are interested in. Are there any questions? Person #3: I think it was very wise to do what you did. Obviously you have had some experience at giving information. Jim Marshall: I have indeed but never as high as the Senate of Australia’s Parliament. It made me a little nervous. Yes I have had to get my point across in other parts of my life earlier in my life. Person #5: Jim did you feel Senators were interested and keen to understand what the problems are and being involved in the Senate inquiry or were they well or it is just a job and we will just give it a tick and flick? Jim Marshall: There were genuine interest particularly from the chair of the inquiry Senator Rachel Siewert and from one of the participating members Senator Nick Xenophon. They were particularly keen to be given some exact recommendations on what should be done. You can imagine they are sitting there all day and people are very intent in telling their story in front of them so their eyes did glaze over. Once people finished talking and they could ask questions and they would be asking that almost exactly - what specifically would you like to change?. For instance the professor - he kept saying instead of cost benefit we should look at value and the question I had in my mind and they had in their mind is how do you measure that. So they then asked him what specific recommendations do you have. They were after specifics. Because they are there all day listening to, let's face it, much the same stuff their eyes would get glazed over. Not long after I started speaking all members seemed to be occupied with other things so that is where my strategy of making sure they stayed awake while I was talking came in. The answer is yes genuine interest and genuine in looking for something exact. They didn’t get a lot of exactness from a lot of people. I did go and see the companies in the morning and it was a bit daunting in the cafe beforehand. I was sitting there by myself and Roche, I think it was, had a team of six or seven people, all briefing up their front man. Afterwards there was about 16 of these people from the three companies having a debriefing and I felt a little bit lonely there by myself. Anyone who was prepared to give them clear guidelines as to a specific change that they could make because they are law makers they need specifics to write down was heard. Person #6: Anyone who missed Jim you can go to the Senate website and watch the actual replay. It is all on video there. That will give you an idea of how it all went. (Ed: it may take ten seconds for the clip to begin) https://youtu.be/NS-zCoLB4G8 Jim Marshall: Thanks for that reminder. The last thing I did this morning was add a link to the video. Our session was four hours long. I didn’t put links to other times that I spoke because I haven’t seen through it myself. I did post that but there is something wrong with our website. I will have to refer that to our web management committee and their technical group to sort out. People who want to check up you can website now and that post should be the top one on the right hand side of the forums. Go to jimjimjimjim.com and click on the blue ribbon and it is on the right hand side of the forums page. Chairman Bruce: Welcomes Dr David Wong to telephone meeting. Dr Wong: As some of you may know in the middle of last year at the Wesley we started doing scans using PSMA or prostate-specific membrane antigen. We were the first centre in Australia to do it and basically when we first started it was to try to identify disease in men with prostate cancer that who had previous treatment either prostatectomy or androgen therapy but then the PSA is rising. In the past it was good to identify the recurrence with bone scan, CT scan or nuclear fusion MRI. For the last nine months we find we have been getting pretty good results certainly looking at things but people are believing us, the way the radiation oncologists and the urologist and even the medical oncology they are believing the results that they are being given. Lately what we are picking up on what we believe are the small non-malignant, but true malignant cells and some of the bone metastases or cancers not identified with the bone scan. In the last nine months even in Brisbane and in parts of Melbourne and Sydney there has been a change in the so called oligometastatic disease prostate cancer where treatment is changing we don’t know where the treatment is leading to but at least there is a way of identifying early invasion. The second group is a bit more difficult it is the stage mainly prostate cancer before surgery that is why we do those scans before the surgery to see whether we can identify the possible metastases. If you know where the disease is you may not want to have surgery that is a bit more difficult time to come to grips with but basically the result today is better where we are looking at. In a nutshell that is where it is now. Any there any questions? That is just the jist of what we do. Person #6: Could you explain why the PSMA is better at detecting cancer than say glucose or sodium fluoride? Dr Wong: The fact your normal prostate will produce PSMA but in very low concentrations so in theory if I was to do PSMA in a normal patient with no prostate cancer there would be minimal of PSMA in the prostate. Men with prostate cancer, the prostate cancer always increases the production of PSMA and therefore we are able to quickly detect the disease. To your second question, in the past the only other tracer we had access to is FDG or Fludeoxyglucose. This is a glucose tracer so the theory is that malignant cells would pick up more glutens it is more hypermetabolic but we found that we have used it in the past for patients with prostate cancer but we find that it is a higher grade tumour that it picks up the glucose not the so called majority of the prostate cancers that we see. Person #5: What size of tumour does the PSMA pick up in comparison to a normal nuclear bone scan? Dr Wong: Even when we started we were confident in taking nodes in terms of nodal disease. We were confident at 5 mm and as time goes by 1 to 2 mm now. The question now is that when you reach 1 to 2 mm nodes how can you be sure, and we are not sure, but the more we do the more we speak it is always there and it is hard to prove it because it is really difficult to sample a very small node. In terms of bone metastases the smallest ever found is 2.4 mm and it was in a patient from Melbourne. It was in a very small sclerotic focus and it was just caught with PSMA. I rang up the radiation oncologist in Melbourne and said what are you thinking I was just reading it because of the work we had done so far you look at it and it is there and there is a small sclerotic lesion so the smallest one that I have caught is 2.5 mm on a bone lesion or bone metastasis. So we are dealing with very small lesions now. Person #5: Does the PSMA pickup metastasis if it has spread through the brain? Dr Wong: That is one case I haven’t got, but yes. When it starts to spread to the brain what the first thing I would ask is it your normal run of the mill Adenocarcinoma. If it starts to spread to your brain as I would advise you before it is a Adenocarcinoma or a Small Cell Carcinoma or one of the unusual ones. Once it starts to go to the brain I would be looking at the histology of the prostate cancer itself. I have had cases where it has gone to the brain but nobody has gone back to look at the histology the initial histology for the prostate cancer. Person #6: What sort of PSA level are you getting results and how extensive is it? Dr Wong: That is a question I ask myself and I think I’ve got an answer. We are trying to look at our own figures. In my hands if it is more than two I think I should really see something, more than two you should see that on the PSMA unless it is one of these funny prostate cancers - neuroendocrine variant. If it is a normal carcinoma more than two you should see something and one to two I think I should see something. The problem when there is less than one or when people starting asking to look upon two in our hands it has been around 50%, sometimes we see it sometimes we don’t. Say someone is uniform two I would closely less confidence we should be starting to do PSMA at uniform two. Knowing that the results still around 50% or less when we do upon two. Once it starts to double I think that is more critical and when it starts to double we should be looking at it more seriously. I just want to say that if you have some time and want to drop by I am here most of the time and see the place you are quite welcome. Have a look at things and have a yarn with the staff and see what goes on and see what we do here. We do PSMA nearly everyday now. Person #5: If has been diagnosed with bone metastases and had a high PSA in the hundreds and then subsequently treated with Zoladex and Cosudex for six years and in that subsequent six years the highest the PSA has been seven but after having chemo the PSA starts to rise. Would there be any benefit in having a PSMA PET scan? Dr Wong: Yes. In my opinion if the PSA starts to rise there would be disease there somewhere and if you can’t track a disease you can not treat. If it is rising there is something going wrong that we need to find. If the PSA is rising yes definitely the PSMA that would be the first choice I believe now days. Chairman Bruce: As a well-retired medico the situation that covers this is that prostate cancer doesn’t remain the same disease all along. So if something is behaving itself, shall we say and growing slowly, but some part has gone not into a more accelerating mode by a poorer Gleason score kind of thing that may be the thing that is worth chasing to quieten down. I would agree that a PSMA study will help with that, is that a correct assumption? Dr Wong: Yes at the Wesley we are quite strong at MRI as you may have found on the Multiparametric MRI. That is very useful in identifying the more aggressive ones and the ones that won’t kill you. That is what we have been doing. We are now trying to look at the role of PSMA within the prostate itself. We do not know. We do know there is some difference most of the time the MRI and PSMA in the prostate cancer most of the time it is the same. That is it attracts the same disease but sometimes it is different and we do not know why so I am trying to look at the occasions where why is it there different and we do not know why. To answer your question is we are always trying to do is to identify the more aggressive type of prostate cancer that will kill you. It has always been our aim to do that. Person #5: Who can make the referral to you for a PSMA? Does it have to be a medical or radiation oncologist? Can a GP do it? Dr Wong: A GP can. In our practice we say any of the medical persons so it just make sense together any medical person can ask to request it. We will do it from a medical person that is our baseline minimum. It doesn’t have to be from a radiation oncologist or urologist just any medical person. Person #7 Thanks for your invitation to drop by. I had a large locally advanced aggressive disease 6 out of 6 on the right side, Gleason 5 plus 4. My disease is well under control at the moment but with those figures it is likely to come back sooner rather than later. My oncologist asks for an annual bone scan. Would the PSMA be as good as, or better than the ordinary bone scan? Dr Wong: I think of the question in another way. In the first three weeks of doing the PSMA I went to our general manager, do not look surprised if our bone cancer for prostate cancer is going to fall because the general manager tracks all the work we do. In the last nine months our urologists are aware of how they behave unless it is advanced disease they can stop asking for bone scans. The problem is you have got to pay for the PSMA and I can understand that because there is no Medicare rebate. You can get a Medicare rebate from a bone scan. In our hands we have felt that PSMA has already replaced bone scans as a scan of choice for detecting prostate cancer. Person #7 Thanks very much for that very clear answer. The next question is what is the cost? Dr Wong: We charge about $700.00 per PSMA. We do a CT for attenuation correction. We can bulk bill that, the CT scan. I tell people look you are out of pocket $700.00 because there is no Medicare. It will take a long time to get Medicare. Person #7: Medicare will cover the CT portion of it? Dr Wong: Yes the CT is on a form and on Medicare. We tell people when they ring up, you are out of pocket with the PSMA. Person #5: What is the waiting list time to get a PSMA scan done? Dr Wong: Less than a week. In our practice we have a policy of for all oncologists things not just PSMA, PET any oncology imaging we try our best in less than a week. To answer your question, less than one week. If it is more than one week let me know and I will see what I can do. Person #11: What time of the day do you do PSMA? Dr Wong: We have got only one PET scanner so we do it mainly early in the morning and late in the afternoon or evening because we have to do the SCG patients and we have to buy the SCG from a local supplier so when it comes we have to do those scans. We produce the PSMA in house. Early morning, late afternoon and weekends if we have to. Chairman Bruce: Isotope studies one would require an injection then an interval and then the scan, am I right there? Dr Wong: Exactly right. We inject people, then half an hour or 45 minutes for the tracers to be taken up, and then we scan. Person #13: Are you aware of any PSMA facilities in New South Wales? Dr Wong: Yes, in New South Wales I think Royal North Shore Hospital is one and Bankstown Hospital. I think they have a waiting list of six weeks together. Person #3: They also have one at Nepean Public Hospital. I had one last Friday it is up and running. Person #12: When you do the PET scan and get the results and it shows a little bit of cancer in your spine somewhere or in your bones. Do you then go to a radiologist and they treat that with radiation? Dr Wong: It depends on your urologist. I would be very careful because my feeling is you should have a urologist you can trust, number one, and they will direct you where to go. At the moment my understanding is if there is one bone metastasis if it is confirmed they will treat it with radiation that is my understanding. Again I think you should be guided by the urologist that you can trust. That is always my belief you might have one person directing the traffic. Yes I think they will treat it with radiation if there is one bone metastasis. Person #14: Just following on from that previous question. If there are several small bone metastases identified would you give the patient any advice about what treatment they should pursue? Dr Wong: That is a difficult one. Make sure you speak to your urologist number one that you trust. Number two if it is multiple bone met I would assume it is difficult to treat with radiotherapy. If you have got a number of them it is hard to treat. If you have got one it is easy to treat. You would have to look at systemic therapy whether it is chemo or hormone. That is hitting out of my area now. Again I would say you have to trust your urologist to guide you. That is the number one person you have got to see. Then they will refer you onto the relevant specialists. Person #13: You have been doing this for nine months now and how important is experience in being able to interpret the scans? Dr Wong: It is really important. I was relying a lot on my urologist. We have a meeting every Tuesday morning and then we can text and phone each other and email each other, it is just critical. Like with all things that you do the more you do the more feedback you get the better you are. The less you do the less likely you will get it correct. It is critical you need to have experience and you need to have the core team behind you like urologist, medical oncologist and radiation oncologist we need to discuss it with experienced people around you to get it right or get it less wrong. Person #2: Are you finding with your PSMA test that you are picking up on unusual and unexpected things? Dr Wong: In a sense what we are picking up on now is expected initially. The more we do, we recognise that they are the same disease appear in the same places. It is no longer unusual for us. Even if it is unusual again I would question the original histology and if unusual do a biopsy of lesions. The more we do we find that some tumours are picking up on the PSMA not only prostate cancer other tumours so if you see something abnormal or funny if safe we will go with the biopsy just to see where we are. Person #7: Just a comment on the question before about experience. Doctor Leslie Thompson who pioneered the multi parametric MRI in Australia, was speaking to us in Brisbane, and he said that he had patients referred to him from newer practices and they had identified disease where he couldn't find it. In the opposite, they had missed disease, when patients had come to him for a second opinion, he was finding out for that type of scanning particularly experience is very important. Dr Wong: When you see a surgeon and they have done hundreds of these or thousands you feel a bit more confident than someone who has only done one. When I get it wrong I feel bad. The more you do you recognise and it becomes second nature to you. It is very important in whatever you do to have that experience behind you. Chairman Bruce: Sounds like you are a doctor who thinks what else can it be before it is narrowed down to, I think it is this, and that is a very valuable type of doctor. Person #17: Is it ever too early to have a PSMA test or should we wait until there is some further signs than just jump in and have one? Dr Wong: I would always be guided by your urologist that you can trust that is the number one. Whatever you are going to do, be guided by your urologist because that is the person taking care of you. Person #17: I am guided by my medical oncologist. My history goes back 15 years and it was due to androgen deprivation then it stopped so I changed medication and the new androgen deprivation regime seems to be bringing it back under control. So I wonder while it is still reacting to androgen deprivation is that too early to have a PSMA or should I do it now? Dr Wong: You can do that as a baseline. At this point in time this is what I am like and then you can go back and whatever changes happen after that you can go back to your baseline. There is a reason for having one as a baseline in my opinion because you know where you are heading. You can always go back to a point in time. This is what it looked like before and now this is what it is like. I like a baseline. Chairman Bruce: As Dr Wong: said earlier and this doesn’t apply to members of our group because we are behind the eight ball as they say but if somebody is diagnosed with prostate cancer they should probably have the scan at that stage to see whether any little metastases outs that person having aggressive local treatment be it surgery or radiotherapy. There is no point in trying to shut the gate when the horse has bolted. Person #5: My medical oncologist feesl that having the PSMA scan would not add any value to the treatment because I am quite widespread bone metastases and it would perhaps muddy the waters by bringing in perhaps, colour things and the outcome is not going to change. What is your opinion on that? Dr Wong: In the terms of functional imaging you want something that will tell you all wholly and quicker whether the treatment is working or not. If you can find that something that will tell you that. Are you being monitored with bone scan or other? Person #5: I get a bone scan done every three months or six months depending on the treatment I am having. Dr Wong: If you have something that will tell you earlier whether your treatment is working or not it may change what is being done. Ultimately it may not change the outcome. Let's say the PSMA can tell you that yes the treatment is all working if they want to continue with it or else the PSMA says look it is not working it is progressing and therefore maybe there is something new or nothing new doing nothing is an option too. It is just a different philosophy in life where people are being put on treatments and we don’t know whether they work or not. If you have something that can tell you yes or no with more confidence in a shorter time frame perhaps of some more use to determine what you want to do with your life. Person #6: The take up of the trace takes about 45 minutes. Getting it out of your system it goes through it urinated out and so on. Does that mean that you can get some cooling of urine and pick up the trace through the urethra? Dr Wong: Thats exactly right. In reading a study that is the most difficult part the PSMA in the urethra and the bladder that is our biggest problem. When you come in we try and make people drink some water to try and dilute it but that doesn’t happen all the time. We have to live with the PSMA in the kidney, urethra and bladder therefore we need to do CT treatment to tell if there is a node there. When we report the study we try not to overcall disease. Let's say you have got PSMA in part of your urethra and you're not sure there is a node we look at the CT. Very quickly you look at a CT if there is a node there and does it look abnormal and if we are really struggling we do an MRI. The better we are at looking at small nodes with CT less in the beginning all of our patients have had MRI before because of less problems for men and the urologist. As we get a bit better we rely less on MRI now. Person #14: Could you please make a comment on the relative effectiveness of hip bone using sodium fluoride as opposed to PET CT using Gallium as a detection of bone mets? Dr Wong: I have been doing PET bone scans for the last 23 years now and since we have started PSMA I have stopped doing it for the sodium PET bone scan. We have replaced our normal bone scan and our sodium bone scan. In our practice the urologists have stopped asking for the bone scans. We don’t touch the bone scans. Specialists who see a high PSA like 100 or 200 still ask for the bone scan but the ones where the PSA is a bit lower they have stopped doing bone scans, normal bone scans and fluoride bone scans. We have stopped doing the PET bone scans for prostate cancer. The PET bone scan is very sensitive for arthritis. So that is another minus for the PET bone scan. Person #11: From what you have just said the PSMA is more accurate, so we should be putting pressure on to have the PSMA listed on Medicare. Dr Wong: We are still going through the motions to get the MRI listed so I think it will take a long time to get PSMA listed. Person #16: You are talking about PSMA scanning. I am currently on a clinical trial at the moment for Enzalutamide (Xtandi) and potentially Abiraterone as well but my medical oncologist has indicated that if at the end of all of that they do a PSMA and there are multiple nodes rather than a single one in my right pelvic lymph node they would consider doing more drug treatment rather than surgery or radiation. Have you got any comments about that at all? Dr Wong: I am used to the treatments at the Wesley because we have meetings together. My understanding is if it is localised and one node I would assume, if they can get to it safely, through surgery or radiotherapy. If it is multiple nodes then it may be really hard to be treating everything. Person #16: If you had one large node and a few tiny spots would it is sensible to try and knock out the large node by whatever means is safe to do so and drug treatment on the smaller bits? Dr Wong: I am very careful here because I am not the treating person I would assume you could get rid of the bulk disease and hopefully you can mop up the smaller disease with your other treatment. It sounds reasonable but again we need trials to confirm that. Person #16: Thanks for that. Chairman Bruce: We are very grateful to you Dr Wong: for coming and we have had a lot of questions answered. Jim Marshall: Dr Wong: has given us a very comprehensive guide to how it works, what it is better than, how much it costs, where you get it and what sort of treatments your urologist, medical oncologist or radiation oncologist might be thinking about with the results. I would very much like to thank Dr Wong: for giving up his time. I look forward to meeting you sometime and taking up your offer to see around the facility. Dr Wong: If your urologist, radiation oncologist or medical oncologist raises a question, just give a ring I will probably be able to answer questions. I can tell your treating specialist what our experience has been so far and I can also defer the question to other experts. You are quite welcome to visit us. Thanks a lot for asking me here today. These Minutes of the Telephone Meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice.
  23. Jim Marshall (not a doctor) said ... The discoverer of PSA, Richard J Ablin, has written a book "The Great Prostate Hoax". It is important for men with advanced prostate cancer to know that Dr Albin is happy that the PSA test is used to test for the return of the cancer after initial treatment with surgery. This return of the cancer (recurrence) is what the PSA test was approved for in 1986. So, as the PSA debate continues, have no doubt that if you have had initial treatment, the PSA test is a good way to find if the cancer has returned. Dr Albin's concerns Simply put: PSA = Prostate specific antigen NOT Prostate cancer specific antigen That is, the chemical PSA is specific to all prostate tissue. It is linked to normal prostate tissue and cancer prostate tissue. It is a measure of the prostate, not a measure of prostate cancer. If you do try to use PSA as a measure of prostate cancer, it will indicate prostate cancer 78% of the time that there is no prostate cancer. This is called a false-positive rate of 78%. Another hint for advanced men An antigen is a chemical involved in the immune system. Dr Albin had been destroying prostates (by freezing) in rabbits, dogs, baboons and rhesus monkeys, looking for a prostate cancer treatment. He saw an immune response (like a vaccine might have caused). Freezing prostates in men, he discovered sometimes cancers far from the prostate (metastases) went into remission. Looking for antigens (immune system chemicals) that might have been involved in this immune-type response, Dr Albin discovered PSA. But this hint, that attacking the cancer might provoke an immune response has led to more recent research for men with metastatic disease. One line of this research is looking at strongly attacking the first few metastases that occur. This is the trial of oligometastatic treatment by strong radiation that we had Dr Farshad Foroudi talk to us about in our phone-in meeting of August 2013. A couple of our members are involved in this trial. ... end Jim Read the minutes of that meeting by clicking on this sentence. OR http://tinyurl.com/pobfbwk Read an interview with Dr Ablin by clicking on this sentence. OR http://tinyurl.com/njezomz [To access this link you may need to register on the site (Free as of 10 August 2014.)]
  24. Paul Edwards

    Five or fewer metastases - "durable remission"

    Dr Faroudi spoke to the monthly teleconference on 23 August 2013 about the POPSTAR trial. There is another clinical trial regarding stereotactic ablative body radiosurgery for oligometastatic cancer about to begin at the Prostate Cancer Research Centre at Epworth Hospital in Melbourne.
  25. Dr Farshad Foroudi a leading researcher in radiotherapy for prostate cancer, particularly advanced prostate cancer, will be our special expert guest at next Friday morning's phone-in meeting. We heard in an earlier post that: Following some success with other cancers, doctors are keen to investigate whether men with just a few prostate cancer metastases will respond to an aggressive treatment to the metastases while they are in an early stage. The researcher leading such a study, Dr Farshad Foroudi, will be our guest on our next phone-in meeting. He will explain the treatment of oligometastatic disease, the trial he leads (POPSTAR, details below), and planned trials. At least one of our members is involved in the trial at Sir Peter MacCallum Department of Oncology (PeterMac) in Melbourne. That meeting will be on Friday 23 August 2013, 9:30 am eastern states, 10:00 am Adelaide, 7:30 am Perth. This web page (below) gives a concise, non-technical explanation of the various therapeutic radiation technologies available (and becoming available). The information here might be good to post for our members before Farshad Foroudi's presentation. (I'm a potential candidate for Farshad's SABR PROSPECT study: I had my initial scans and a chat with him a couple of weeks ago). The link below is to a page or document that we do not control. Parts of it may be wrong or misleading. Check with your doctor if something interests you. If it is temporarily or permanently unavailable, you may receive an error message. http://www.beverlyhillsradiationoncology.com/technologies.php
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