Paul Edwards Posted February 3, 2014 Share Posted February 3, 2014 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. Link to comment Share on other sites More sharing options...
alanbarlee Posted February 3, 2014 Share Posted February 3, 2014 What a great post, Paul. Keep us up to date with your (ultra-sensitive) PSA profile and the PET/CT imaging trend, and also the inputs from your endocrinologist. I think you've ticked every box in developing and implementing your treatment and monitoring strategy with your medical team. Best wishes, Alan (Barlee) Link to comment Share on other sites More sharing options...
stevecavill Posted February 4, 2014 Share Posted February 4, 2014 Hi Paul, It was great to read your story. We seem to be in a very similar position, though I'm a bit younger. I was diagnosed in Dec 2012 at age 50. PSA 20, DRE, Biopsy returned Gleason 4+5=9. Bone scan showed metastasis to sacral spine and thoracic spine, and possibly femur. My urologist had the same recommendation - prostatectomy would be pointless, hormone treatment (ADT) until it stops working. After 1 month on Zoladex (injection of goserelin implant and daily bicalutamide (casodex)), my PSA was down to 8.5 then 2 months later 0.18 so the ADT was working extremely well. I had read about radiation treatment, and visited a radiation oncologist in May 2013 who mentioned the word "oligometastasis". That started me on a long path of reading medical journal articles (my son at University was able to download the papers for me). I also found some great references on this site. I went under the care of Dr Andrew Kneebone at Royal North Shore Hospital in Sydney. In November I had 4 weeks of treatment to the prostate, lymph nodes and sacral spine. This month I am having two doses of SBRT radiation to the thoracic spine. My PSA is now 0.02. After the second session of radiation I hope it will fall further. LIke you it is likely I have micrometasteses that won't show up on scans. Dr Kneebone has suggested the the PSA is the best indicator of the return of cancer. My urologist has recommended a FDG/PET scan to see if there are further tumours, but after the radiation and 12 months of ADT I am unsure of the benefit of that. If anyone in Sydney has a small number of bone metastases, get in to see Dr Kneebone, I can't recommend him more highly. Regarding PET scans, do you know the exact name of the scan? I have read that C-11 Choline or C-11 acetate, or F-18 Sodium Fluoride are more sensitive than FDG, but as far as I can tell those scans are not available in Australia. Steve Link to comment Share on other sites More sharing options...
Paul Edwards Posted February 5, 2014 Author Share Posted February 5, 2014 Hi Steve Very interested to read what you're doing. It's good to know that stereotactic body radiation treatment for prostate cancer is becoming available in Australia outside clinical trials. Compared with the 4 weeks of traditional radiation therapy that you've already had, you'll find the stereotactic body radiation treatment a breeze. Please know us know how your treatment goes. Under the POPSTAR trial the PET Scan that I will receive at the six month mark after the radiation treatment will be a Sodium Fluoride (Na-18F) PET. Link to comment Share on other sites More sharing options...
John Murphy Posted February 5, 2014 Share Posted February 5, 2014 Hi Paul, Very interesting story. Many thanks for such a detailed and inspiring post. Recently I contacted Dr Faroudi expressing an interest in his Popstar trial. As with you he only takes men who have had their prostate removed or radiated. Prior to this contact with Dr Faroudi I had tests and consultations with Professor Dechesne at Peter MacCallum. Although I had only one really positive metastases in the bones she recommended not to treat the prostate. Now my PSA has risen further (50), although a recent MRI has not indicated any more metastases. I will continue to push ahead with treatment possibilities. I already have an appointment with Dr Moon. Any suggestions? See "my story". John Link to comment Share on other sites More sharing options...
Paul Edwards Posted February 6, 2014 Author Share Posted February 6, 2014 Hi John I'll get in touch by PM (personal message) Link to comment Share on other sites More sharing options...
DavidAbrahams Posted February 7, 2014 Share Posted February 7, 2014 Paul, You are to be commended for posting such a clear and detailed journey diary. I hope you have continued success. Good luck David Link to comment Share on other sites More sharing options...
Nev Black Posted January 8, 2015 Share Posted January 8, 2015 Hi Paul Thank you for the most recent update. I am sure many men, like me, will be following your story with great interest. I wish you well. Nev Link to comment Share on other sites More sharing options...
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