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  2. Mishka@wn.com.au

    ZOLADEX TO XTANDI

    Thanks to all contributors to this interesting and important thread so far. I tried unsuccessfully to reply to Tim a day or so ago. Trying again here now, why do different forums have so many ways to confirm reply POSTS... Hi Tim, I've been on Xtandi 2 x 40mg daily for just over three months, in addition to 4 monthly Lucrin depot injections. My brief Prostate history: Laparoscopic removal of prostate in October 2013, Gleason score 9 but cancer was contained within prostate... Excellent bladder control after 8 months but PSA started to return year after operation. Irradiation of prostate bed 40 treatments(approx.) Which decreased my bladder control again... PSA started to return about year later and I commenced Lucrin depot injections thereabouts, which have kept my PSA in check until earlier this year when it started to increase again. Have accurate figures and dates but haven't collated them properly yet. Last year a full body CT scan showed small tumor on left lymph node near hip. Unsuitable for cyber knife treatment due to proximity to major leg nerve. Commenced Xtandi on 15/02/2019 and PSA declined immediately, also recent CT scan showed tumor on lymph node had reduced to half it's size. Penis size not often discussed here that I've seen..? My experience was approx 2.5 cm decrease in penis length following prostate removal which did not improve in time. As someone uncircumcised, my flaccid penis became mostly foreskin. The one consequence I noticed since using Xtandi is that the diameter of my penis appears to have reduced by at least 50% and like a cooked length of noodle it now has no rigidity whatsoever, to the point where I cannot pull my foreskin over my penis head. My ssecialist has advised that will probably stay... Small price to pay if it keeps PSA and tumor at bay. I have never been prone to seizures but specialist did not particularly warn me of increased risk using Xtandi... My 80mg daily is a low dose I believe. My wife and I lost interest in traveling several years ago and have not been overseas since treatments began. Following your seizure comments I did a quick check. Pubmed indicates at: https://www.ncbi.nlm.nih.gov/pubmed/29222530 that : "In controlled clinical studies, 0.5% (10 of 2051) of patients experienced seizure, but patients with a history of or risk factors for seizure were excluded. Men with mCRPC and seizure risk factors have an estimated seizure rate of 2.8 per 100 patient-years without enzalutamide exposure." I'll be interested to see if anyone else comments on their Xtandi experience. Best Regards, Mishka
  3. Today
  4. Patrick Turner

    ZOLADEX TO XTANDI

    Hi Timbaker, I am presently on Xtandi, for last 6 weeks, also on ADT monthly Lucrin shots, and I just finished 4 shots of Lu177 which has worked far better than chemo with far less side effects. I've been fighting Pca since 2009, Gleason 9, inoperable, had EBRT in two lots, Cosadex and Zytiga also, and I am too busy to get fatigued or depressed because Lady Luck installed a "Be Active" genetic trait in me and I thank her. Since 2006 I cycled 140,000km, and got both knees replaced during this cancer battle, and might get a new hip or two soon because Lady Luck wasn't kind enough to give me the right genes for an extended athletic ability. Chemo had the worst effect on me but I rode a bike every day, went out for lunch, and tried to make a few friends as must be done to stop going mad as I age. So far, side effects of Xtandi are low with regard to heart rate, much less for me than Zytiga. But I do get one good hot flush a day, but that might be because I ain't cycling 220km a week like last year, and all during previous treatments. One hip gets sore in day a little, and at night, and its not just the Pca mets in femur and pelvis nearby, its cartilage wear, probably sped up by previous EBRT and the inevitable premature aging effect of ADT. I was also a building worker for 25 years. I am only able to live so long. Aunty Destiny can be so unkind, and Unkel Fait is the same, such bad relations, IMHO, but I live each day OK. I need to get a skin check today. All that time in the sun during youth has caught me up.... It was a cold night, but today has brilliant sunshine, 20C, so what more could I want? Patrick Turner.
  5. Patrick Turner

    PBAC sets conditions for Xofigo (Radium-223) on the PBS

    I don't envy having that stuff pumped in to me, beware the side effects. In public Canberra Hospital I was offered Docetaxel which made Psa quadruple, and then doc doubted Cabazitatel would have worked any better although he said he had had some better results with it for some men. There were two higher and supposedly more aggressive chemos with carboplatin being one. My onco doc seemed to think all chemo has a low level of success on Pca bone mets so he said he'd be happy to refer me to Lu177 when the Docetaxel failed, which it did. There was trial at that time for Lu177 or cabazitaxel and you would be randomly assigned to either, and sure, the trial was free, but I was not going to take a risk that I was assigned to Cabazitaxel after it failed and not be able to get Lu177, so I just paid the aud $40,000 for Lu177. I had numerous soft tissue mets and bone mets, so that choice was best according to docs. The Guvmint is in no hurry to approve PBS for all these expensive cancer fixes that merely lengthen lives and don't cure. In old days when 50%+ of men smoked 20+ ciggies a day, many were dead by 70, and there was no effective cure so the budget cost of old ppl was quite low. Well now, life expectancy is about 84 because less ppl smoke, and because of the large number of very expensive drugs, so the budget cost is far higher, so how do we afford the costs of 12 new submarines and a whole pile of medical expenses from the huge number of baby boomers all heading into expensive old age? Look what happened when Labor tried to raise taxes for these expenses. People rushed to Libs who they think won't tax them but the deficit may be far greater in 3 years, and who is ever going to repay it? It does seem LU177 and Ac225, Ra223 are more effective than any chemo and for men with aggressive Pca except for endocrinal version of Pca that does not make much Psma and its often swifter to kill a man. Not all men are able to get benefit from Theranostic treatment with Lu177 or Ac225, but many with bone mets could do well with Ra 223 because it is absorbed to bones where calcification is going on at bone met sites. Afaik, it Ra tries to replace calcium wherever calcium is being uptaken, maybe where arthritis is developing as well as Pca, but the amount is small because usually arthritis is a slower growing condition than Pca, so whatever Ra 223 that finds its way to other places in body is a small amount. The Ra 223 has a short half life like all these nuclides so its not going to do enormous damage unless a man has too much of the stuff. Older men probably don't have to worry about fertility of sperm, or mutation of it, or mutations causing leukemia given enough time. My present use of Xtandi or enzalutamide is costing Guvmint a huge amount, and so did Zytiga, these are just pills you take, then there is continuing monthy ADT injections. But these are paid fully by Medicare. But I've had umpteen scans that have probably cost out of pocket over $10,000 so far in my battle since 2009 diagnosis at 62. I have Xrays soon to see if my hip joints need replacing because one is painful at night and has stopped me cycling. I see a hip&knee doc on 5 June, and will get on waiting list, about 180 days at least. This is if I get Pca "under control", ie, Psa nice and low, or about 1.0, so that the op can be justified because I'll be alive for a few more years and need my mobility. Before having knees done, a private doc said there was a 9 month wait, not much less than public system. With Lu177, I was able to be treated within 4 weeks of the last chemo I had, ie, in a fairly timely manner, and with cancer I could not afford to dither about. I guess I am lucky to have slow growing version of Pca. But it wants to take me out. Other men can have different forms of Pca, some are weak, and easily treated and don't spread, some are faster than others, and more aggressive, so what works for one man may not for another. What the Guvmint never credits ppl with is the amount of dough old men leave to others in the form of a big tax free handout. All of society gets a huge benefit by the status quo action of inheritance in Oz. No need to tax it because whoever gets it will spend it thus generating better GDP and employment et all. The politics of envy of the rich is questionable, and every rich old fella can't take it with him, so it goes out to his descendants to fertilize the economy, IMHO. Put another way, when I die, my house will more than pay for all the take from Guvmint for expensive cancer treats. There is a huge amount now in super funds, trillions, so how come society acts like it does not want to give longer lives to cancer sufferers? Patrick Turner.
  6. Yesterday
  7. Charles (Chuck) Maack

    ZOLADEX TO XTANDI

    Hello timbaker, You didn’t mention the dose of Zoladex that was prescribed. It may be that if the 3-month supposed effective dose of 10.8mg was administered it caused you the issue for which you remark. If this is the case, perhaps getting the one month (actually every 28 days) dose of 3.6mg will not cause you the same issue, and would certainly provide better ADT than merely Casodex/bicalutamide or Xtandi/enzalutamide alone. If this monthly dose is tolerated, then after three or four months you could then try the 3-month dose and possibly not have the same issue since your body will have learned to tolerate the medication. If your cancer is still hormone sensitive, the Xtandi may serve a greater purpose than Casodex, since Xtandi is considered somewhat a “super” androgen receptor blocker. Xtandi is not a replacement for Zoladex. As I note, Xtandi is an antiandrogen designed to better inhibit androgen (aka testosterone) from accessing the multitude of androgen receptors on cancer cells. Zoladex is an inhibitor of androgen/testosterone testicular production. Might I suggest that you have your Prolactin level determined (reasoning https://tinyurl.com/7w5omeo). Next determine if your testosterone (T) level and your dihydrotestosterone (DHT) level are elevated. If so, then the addition of the 5Alpha Reductase (5AR) inhibitor dutasteride/Avodart could be considered to add to your current ADT to prevent testosterone (T) conversion to DHT (the up to five times or more powerful stimulant to prostate cancer cell growth and proliferation than T) when T comes in contact with 5AR. BUT PLEASE ALSO NOTE: Medications involved in Androgen Deprivation Therapy (ADT) are known to increase cardiovascular risk. Thus, IT IS IMPORTANT that prior to prescribing any form of ADT medication the patient’s other health issues, that would include already present cardiovascular issues, are determined. As noted in: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4516188/ “Androgen deprivation therapy (ADT) has been the mainstay of treatment for advanced prostate cancer for decades and has been shown to control disease and improve symptoms. In addition, for men with high-risk localized or locally advanced prostate cancer, short-course ADT in combination with radiotherapy improves survival. There is evidence that ADT increases cardiovascular risk, particularly in men with preexisting cardiovascular disease. This increased risk may apply even with short-course ADT. In an individual patient, the benefits of ADT should be balanced against the risk, and patients who require ADT should have risk factors for cardiovascular disease optimized. There is some evidence to suggest that more contemporary methods of delivering ADT may reduce cardiovascular risk.” Dr. Matthew Roe, a Professor of Medicine at Duke University’s Clinical Research Institute (DCRI), the Faculty Director of the Global Outcomes Commercial MegaTrials program, and the Director of their Fellowship Program, remarks: “If a patient who has advanced prostate cancer and known cardiovascular disease is being considered for androgen deprivation therapy, it is important that he speak with his cardiologist. (Presumably, both a cardiologist or cardiovascular specialist and a urologist or oncologist would treat him.) He needs to ensure that all the providers have a discussion about what the best and safest treatment would be before therapy begins. Obviously, this trial (the PRONOUNCE trial regarding which is safer for patients with cardiovascular issues, the GnRH agonist Lupron or antagonist Firmagon (or neither?) https://tinyurl.com/yxnw5kb6 ) is not completed yet so we don’t have any answers. In the meantime, it is certainly in the patient’s best interest to ensure that his providers are communicating and trying to jointly determine the right approach.” Unfortunately, we prostate cancer patients have to determine with our treating physicians when the benefit of drugs to serve controlling our cancer outweigh the side effects we may have to learn to endure. DISCLAIMER: Please recognize that I am not a Medical Doctor. Rather, I do consider myself a medical detective. I have been an avid student researching and studying prostate cancer as a survivor and continuing patient since 1992. I have dedicated my retirement years to continued deep research and study in order to serve as an advocate for prostate cancer awareness, and, from an activist patient’s viewpoint, as a mentor to voluntarily help patients, caregivers, and others interested develop an understanding of this insidious men’s disease, its treatment options, and the treatment of the side effects that often accompany treatment. There is absolutely no charge for my mentoring – I provide this free service as one who has been there and hoping to make their journey one with better understanding and knowledge than was available to me when I was diagnosed so many years ago. IMPORTANTLY, readers of medical information I may provide are provided this “disclaimer” to make certain they understand that the comments or recommendations I make are not intended to be the procedure to blindly follow; rather, they are to be reviewed as MY OPINION, then used for further personal research, study, and subsequent discussion with the medical professional/physician providing their prostate cancer care. Charles (Chuck) Maack (ECaP) - Continuing Prostate Cancer Patient Since 1992, Advocate, Activist, Volunteer Mentor since 1996 to men diagnosed with Prostate Cancer and their Caregivers locally and on-line Worldwide
  8. ardee

    ZOLADEX TO XTANDI

    If you are considering Xtandi monotherapy, discussing newly approved in Oz, Erleada (apalutamide) with your med onc may be appropriate. We are aware of a couple of situations here in the US where monotherapy apalutamide is showing success. It has been used by a highly reputable GU med onc at Mount Sinai, NY, Dr. William Oh. Listen to this Sept 2018 recording of one man speaking about his experience ... https://ancan.org/monotherapy-apalutamide-erleada-a-discussion-with-al-pfadt/
  9. Hi Patrick. Many thanks for your thorough response and yes, I totally agree there will be a lot of fluffing around politically for awhile until all the dust settles. I am still going to raise the question again, even if on deaf ears! Troy has had all the standard PBS treatment options and has also had Lu177. Thanks for the heads up on Ac225. That is not one that has come up in conversation with the oncologist at this point. Being initially diagnosed with advanced metastatic Pca at 43 and with a young family, he is pretty keen to exhaust all options. Started carboplattin chemo today. This is not one we have had previously. If no response, we will go down the Ra223 track soon. Wouldn’t it be nice if it did get on the PBS list in the near future!! Take care and thanks for the information.
  10. timbaker

    ZOLADEX TO XTANDI

    Thanks Alan and Rosco, I was diagnosed in July 2015 with PSA 120 and Gleason score 9, with mets in the right femur and left seventh rib. I had chemo (docetaxal) along with Zoladex from the outset and tolerated the chemo reasonably well. The Zoladex only really became an issue after about 18 months. The lesion in the right femur cleared up about two years ago and hasn't come back, and I have had some targeted radiation on the rib, which is showing signs of decreased activity. My hope was that zapping the rib might drop my PSA and allow more time off Zoladex but that hasn't been the case. I had a six month break from Zoladex in 2017 because of the side effects and did quite well on Cosudex alone for the first months before PSA started rising again, and it was a similar patter when I had a break late last year. Now it is rising quite rapidly - from 5 to 12 to 16 to 23 over the space of about three months, so a very short doubling time, My oncologist suggested going back on Zoladex which I was dead against, as it put me in such a dark place last time. He didn't mention any of the other options you've touched on Alan but I might bring them up with him. Thanks for the tips on travel insurance. I figure I've just got to give the Xtandi a go at this point and see how I fare. cheers, Tim
  11. alanbarlee

    ZOLADEX TO XTANDI

    G'day Tim, We're all different in how we react to the various drugs that we need to defend ourselves against prostate cancer - sounds like you drew the short straw with Zoladex, which I've been on (with other drugs) for the past 14 years. Rosco's most recent regime and response (similar to mine) shows how spectacular these drugs can be in controlling potentially serious PCa. You might want to raise with your medonc an alternative to Zoladex - perhaps degaralix, a GHRH antagonist (different mechanism of action to GHRH agonists like Zoladex). This is injected monthly, rather than 3-monthly, and can cause some mild abdominal soreness around the injection site for a couple of days - but only a trial period will show whether there's a net benefit. Otherwise, maybe Lucrin (closer to Zoladex) might be worth trying. Hot flashes and some fatigue are often part of the scene with androgen deprivation, but you soon learn how to manage these side effects. The reason for pursuing this this category of drug is that it is usually required in conjunction with Xtandi (a much more effective drug than Cosudex, but occasionally associated with seizures, as was the case with Rosco), or Zytiga (equally effective, but a testosterone synthesis inhibitor rather than a testosterone blocker). In Australia, PBS access to both these drugs usually requires previous (or failed or not tolerated) Taxotere, a chemotherapy that's often quite well tolerated, especially with younger and fitter men like yourself. Some data on your current PSA, PSA DT (doubling time), Gleason score / Grade Group following biopsy or RP (if available) and scan results would provide us with a better basis for sharing experiences that are relevant to your circumstances. On travel insurance, there's no substitute to looking around (with help from Google). We're travelling to Pategonia and the Antarctic next January at age 79 and 78, and found we could get all the key coverages we wanted at reasonable cost without having to declare specific medical conditions - which, with specified exceptions, our provider doesn't cover. Take a look at FastCover if this option is of interest to you. Keep us posted - and good luck! Alan
  12. Roscoaus2000

    ZOLADEX TO XTANDI

    Hi Timbaker, I was diagnosed with advanced metastatic prostate cancer with CT scans and psa of 9000. I was started on daily Cosudex daily and Zoladex injection 3 monthly. My psa dropped to less than 1 after 3 months. After 12 months psa started rising again and I was changed to Xtandi 2 tablets daily. Psa dropped to <0.01 but after 4 months I suffered a mild seizure. Medication was then changed to Zytiga plus prednisolone. That was 12 months ago and psa is still 0.01. Zoladex has been injected every 3 months and for 15 months I have had monthly demos Amon injection. While on Cosudex I had some hot flashes and muscle aches. After change to Xtandi and subsequently I have been free of both those problems. I power walk and play golf to maintain fitness. With regard to travel insurance I have regularly cruised world wide and I obtain insurance from Vero with an exclusion for my pCa.
  13. timbaker

    ZOLADEX TO XTANDI

    HI ALL, After suffering pretty crippling depression on Zoladex, I've managed to enjoy a couple of extended breaks from it on Cosudex alone over the past couple of years. With my PSA now rising sharply my oncologist has suggested it is time to move on to Xtandi. I have been told many men tolerate Xtandi better than Zoladex but the list of potential side effects has made me pretty nervous, particularly the risk of seizures. I wonder what others have experienced in making the transition from Zoladex to Xtandi. I know it varies greatly between individuals but would be interested to know how others have fared. On another note, I'm also curious what other men with this condition do about travel insurance when they travel. We had a family trip to the Maldives last year which was great but I discovered I was unable to get travel insurance with my condition. Are there any insurers that will cover you, even if only for matters not related to the cancer diagnosis? I'm a surfer and still enjoying reasonably good health and keen to make the most of it but traveling without travel insurance is pretty risky and could get wildly expensive if anything went wrong. Thanks, Tim
  14. Pinks

    New Diagnosis - Our story

    Thanks Bruce! Of course you can suggest. I will tell my brother in law and sister to do that. My BIL is a orthopedic surgeon. So he should be able to tell, I hope. I will get back on this one. I know you had recommended this earlier too and I had asked them to check on my dad. By any chance do you know why the swelling feet? I FaceTimed with my dad and saw his feet. They are pretty swollen and he has difficulties going up and down the stairs. The oncologist has suggested it could be due to elevated PSA and to lift the feet while sleeping. Mom is applying coconut oil for the rash on his feet and wrapping thick bandage (I think). Not sure if that would help or not.
  15. Patrick Turner

    PBAC sets conditions for Xofigo (Radium-223) on the PBS

    Hi Melissa, It may be some time before Zofigo aka radium 223 is funded by PBS especially after Oz voted for Scomo and not Shorten who wanted to better fund cancer treatments by removing tax breaks et all. But never mind, Ra223 was available I was told from Theranostics Australia and if you try to talk to any Polly Tishan about PBS right now you might find them to be polite, but very similar to a brick wall. TA also sell Ac225, good for all kinds of Pca mets. Various cancer treatments are subject to what seem strange or unjust inconsistent PBS rules. For those without the money, and who cannot borrow the money, the topline treatments may be unavailable. If you own a house, you might think of a reverse mortgage. Despite our imperfect health care funding here, its better than in USA where medical insurance is very costly, and having cancer can mean you have to sell the house. But if a house in Oz is worth say $600,000, and cancer treatments are $200,000 then when you and husband finally bow out, the bank or lender would take maybe $250,000 from house sale and that leaves $350,000 for your heirs if there are any. The dilemma I see is whether somebody opts to bow out early due to lack of funding but the heirs get a better amount of $$. There may be better ppl to talk to than me about this sensitive issue. There are numerous baby boomers like myself facing such bothers. Patrick Turner.
  16. Patrick Turner

    Strontium (metastron) treatment

    Hi all, Correct me if I'm wrong but strontium 89 was for bone pain relief, but does not stop the Pca, but Ra223 does, and is available in Oz from Theranostics Australia and the very brief guide to its use is at http://theranostics.com.au/wp-content/uploads/2015/05/Radium-223-Therapy.pdf I don't know if its approved by Oz authorities. But like Lu177, its available in Oz under Oz law where chemo has failed so a man is free to get what he thinks will work, and with Lu177, only phase 2 trials have been done so far, and afaik phase 3 trials are now being done in USA which will allow more US men to get it under US laws. At my No 4 Lu177 shot 2 weeks ago in Sydney there was one Oz man and myself plus two US men who fly over to get it. BTW, so far so good with my Lu177, Psa was 25 before any Lu177. It slowly reduced to 3.7 just before 4th infusion, and I am also now on enzalutamide since just after 3rd Lu177, and all seems to be working but scans in 3 weeks will tell me and doc more. There's a trial to start at St Vincents run by Prof Louise Emmett in Sydney with Lu177 combined with enzalutamide and this doc thinks that the enzal effect is to make Pca express more PsMa thus make more Lu177 gather at Pca sites wherever they are, and thus supercharge the effect of Lu177. I last spoke to Prof Emmett at Waratah Hospital at Hurstville in Sydney where she was filling in with clinical work for the day on my 3rd Lu177 shot, along with only one other patient, just before getting a grant for her research at St Vincents. She said I must worry about what happens after Lu177 because I may have mutated Pca that makes no PsMa and this can grow to kill, and she suggested getting DNA test for Brca2 gene, likely for me because of my family history, and then I'd probably need more treatment that is not available at public hospitals. This is probably not covered by Medicare, and therefore probably not cheap. Patrick Turner.
  17. Last week
  18. alanbarlee

    Strontium (metastron) treatment

    Strontium (and samarium) isotopes are 'old technology' in the systemic radiation therapy arena, now that radium-223 has entered the scene - soon to be followed by lutetium-177/PSMA and others. As we write, radium-223 has been approved for sale in Oz by the TGA, but is has not yet recommended for PBS subsidy by the PBAC. A further application from Bayer - the manufacturer - is in the pipeline, however, and you should add your voice to the current advocacy push for it (see Jim's recent post on this). Cheers, Alan
  19. Bruce Kynaston

    New Diagnosis - Our story

    FPlease, might I suggest you gently, repeat gently, 'thump' with closed fist, down the spinal column to see if that suggests tenderness where he feels the pain. If so, he needs an X-Ray of that area as he may need special attention given it with beam therapy. I am a very much retired radiation oncologist. best wishes, Bruce.
  20. Charles (Chuck) Maack

    Strontium (metastron) treatment

    Strontium 89 has pretty much been replaced by the more recent Radium 223/Xofigo for the many reasons explained in this reference: https://tinyurl.com/y3oyw7eo According to this reference, Radium 223/Xofigo has been approved for use in Australia: https://adisinsight.spri nger.com/drugs/800017421
  21. Pinks

    New Diagnosis - Our story

    Just wanted to update on my dad's health. The oncologist prescribed Honvan and wanted to see if that works. My dad did his PSA after 3 weeks of taking that medication. His PSA went down to 47 from 79. Hopefully that will bring the PSA down further. They will test again in few days. His feet are swollen and have rash on them. The doctor said it may not be honvan, it may be because the PSA went up. Rash, I am not sure what he said. If it doesn't improve or more side effects, then he may have to change the Honvan dosage or prescribed something else altogether. That's where we stand right now. But I think PSA went down is a good outcome. My dad still has back pain. He has difficulties sleeping on his back on a bed. So, oncologist now gave his different pain medication. He said if the PSA goes down further, may be we can give radiation to prostrate, lymph node in addition to bone (i think) instead of just to the bone if we do the radiation now. That's what he would prefer, however, if the back pain gets severe he said we could do the radiation right away. So we are just waiting a few days to see if it improves as the PSA is going down. Dad has quit eating meat, dairy and eating more tomates, pomegranate, turmeric, vegetables. Still researching on his diet that would help. He is not able to exercise due to his back pain. Are there any recommendation on exercises? Please feel free to let me know if any suggestions or we are making any mistakes. The oncologist seems to be knowledgeable and so we are moving forward with his plans. Hope all is well. Thanks again for the wonderful support I get here. Appreciate it. On a side note, my son turned 3 months. He is absolutely adorable and super cute. I am hopeful and looking forward to my mom and dad visiting us in USA in near future to meet their grandson. We facetime with them everyday. Have a wonderful day to all of you.
  22. Troy Graham

    Strontium (metastron) treatment

    Hi Folks. Our current oncologist has advised that they are unable to source Strontium currently and this was recommended as one of the possible treatment options. Can anyone advise if they are currently receiving this treatment and where it is being undertaken. Many thanks.
  23. Good Evening. My first time posting on this forum and apologise if this topic has been dealt with previously. I am seeking any information on when Radium 223 will be available through the PBS Scheme. We really need to go down this pathway urgently and I was going to speak with our local member this week, as I understand it is a legislative matter at this stage. Your assistance is much appreciated. Regards Melissa (wife) and Troy
  24. Patrick Turner

    Questions for oncologist

    Ignore my last post because I pressed the wrong button on keyboard and my post uploaded before I was finished...…... Hi DiRi, I guess if your man is in pain and needs powerful pain killers that his Psa is high and the tumour load in also high. It's nearly 10 years since my diagnosis but over that time I had ADT, EBRT twice, Cosadex, Zytiga and Docatexal and Psa did not go down after 4 Docatexal shots, but Psa reached only 45. I had PsMa Ga68 scan which showed many small bone mets but docs thought I'd respond to Lu177, so I booked in to begin it. While I waited, I had a 5th Doacatexal and Psa went to 50, the highest it has ever been. But then a month later and just before first Lu177 Psa was 25, twice what it was when I began chemo. I have just had 4 x Lu177 shots but before No 4, Psa went down to 5, my slight discomforts vanished, and then docs put me on Xtandi which I am tolerating well without any side effects. Docs thought the Xtandi would make Lu177 work better and I then had 4th Lu177 and maybe I will not need more because before No 4, Psa was 3.7. So Psa is falling quickly and maybe it will go much lower when I have a talk to doc in about 3 weeks and have another PsMa scan and this should show if I have got a very good response to Lu177. For Lu177 to be effective, the PsMa scan should show the mets up clearly, and if my mets have become invisible to the next Psma scan there would be no point in having more Lu177, but maybe in months or years ahead, Psa may rise again because that's what prostate cancer does, it often goes down after treatment A then rises, so B is tried, then it goes down then rises, then C, D, E, F, until nothing in the doctors cupboard can make Psa go down and stay down. All the many treatments allowed me to have a very good quality of life since diagnosis and maybe for a few more years, but not forever. I'll be 72 in July, and I can't say I will reach 75, but apart from the threat of Pca, docs think I am doing OK because so many have a far worse outcome. Probably age and fitness can affect how well anyone might fare with Pca treatments. But the fitter the better. Anyway, Lu177 is becoming more popular because chemo tends to not work well for Pca. Sure Lu177 is expensive, there's no Medicare rebate for Australians like me here yet, but I found the money. There are some trials going on here as well. In USA there maybe trials but maybe lots of travel is also required. Fighting cancer is about going wherever you have to and paying the dough and all in a timely manner. I wish your husband the best of luck, Patrick Turner.
  25. Patrick Turner

    Questions for oncologist

    Hi DiRi, I guess if your man is in pain and needs powerful pain killers that his Psa is high and the tumour load in also high. It's nearly 10 years since my diagnosis but over that time I had ADT, EBRT twice, Cosadex, Zytiga and Docatexal and Psa did not go down after 4 Docatexal shots, but Psa reached only 45. I had PsMa Ga68 scan which showed many small bone mets but docs thought I'd respond to Lu177, so I booked in to begin it. While I waited, I had a 5th Doacatexal and Psa went to 50, the highest it has ever been. But then a month later and just before first Lu177 Psa was 25, twice what it was when I began chemo. I have just had 4 x Lu177 shots but before No 4, Psa went down to 5, my slight discomforts vanished, and then docs put me on Xtandi which I am tolerating well without any side effects. Docs thought the Xtandi would make Lu177 work better and I then had 4th Lu177 and maybe I will not need more because before No 4, Psa was 3.7. So Psa is falling quickly and maybe it will go much lower when I have a talk to doc in about 3weeks and have another PsI will last LLu18iyo It went to 5 a s bokked in for after . injects. and Rtook srly have a am havt
  26. Charles Thurgood

    Questions for oncologist

    Greetings DiRi, While I'm a long term (19 years) prostate cancer patient perhaps the following might be of assistance. I have had 3 monthly Zoladex 10.8 mg. since June 2010 with EXGVA 120 mg/monthly added later. In 2017 with PSA in the 150-170 range I completed courses of Cabazitaxel followed by Docetaxel but as these didn't lower the PSA and a PET scan confirmed bony metastatic and other areas had increased in size I was referred for Lutetium treatment. After 4 treatments (not a trail) my PSA fell from 730 to 70 which my Oncologist advises places me in the lower 50 percentile (whatever that means). I due for blood tests and a PSMA/PET and CT scan early June. I take Caponol 20mg./daily for pain relief in the pelvic area but apart from the odd bout of "dry retching" am in reasonable health being able to work in the garden and walk 3-4 km usually once a week. When the Lutetium treatment started I was told there would be 4 but now it's unlimited ("if you have the money Charlie we have the time") Hopefully the above will be of assistance. Regards Charliet
  27. Earlier
  28. My husband is due to see oncologist tomorrow and I'm putting together a few questions to ask. This visit is a follow up 2 months on from reducing his dose of Xtandi from 4 x 40mg tablets to 3 x 40mg tablets due to the unpleasant side effects and overwhelming fatigue and strange tingling that he would get through his body. The reduced dose has been effective in reducing the side effects to some degree so we are hoping that his PSA hasn't risen as a result. I've read about Metformin being added for those on Enzalutamide and that it may have the benefit of delaying resistance - this is one question that I will ask the oncologist. I can't help but think we are in a kind of holding pattern waiting for the Enzalutamide to stop working. If/when this happens I wonder if my husband may be offered LU-177. I know there have been mixed results, but it does sound promising (but expensive) unless on a trial? Hubby has zolodex injections every 3 months with the 120mg Xtandi daily. He has had 6 rounds of Doxetaxel and 3 sessions of radiation since diagnosis in Feb. 2017, He has "innumerable" mets in his pelvic area and one in his L3 but no lymph involvement. His pain is significant and so he takesTargin and Endone as needed. I'm guessing that if his PSA has risen the oncologist will put him back on the full 160mg dose of Xtandi and keep an eye on things. The information on this forum have been great. It has given me the ability to understand more of what the oncologist tells us and almost to know what may be next in terms of treatment, thank and any advice much appreciated.
  29. Mav

    Question on Zoladex

    I applaud you all so much...You have been through so much already...you are all fighters. Hope you all have continual good prospects with your treatments I can see my husbands journey is not going to be short lived (i hope) I will fight for him to get a lot of years survival yet Have to make our 50th Wedding anniversary only 3 Years to go.. Good luck to you all...i will let you know of his progress.. Thank you again for your information...
  30. Charles (Chuck) Maack

    Lutetium Trial

    I appreciate the explanations provided by both Patrick Turner and Chalkie. Provides two sides to the effectiveness, though I certainly wish Chalkie's would have been positive. For certain I will be looking forward to further posts by the both of you as the journey continues. I am taking the liberty of copying the posts of both of you to share with other PCa patients whom I know are anxious to learn more regarding this treatment in trials but appearing for most as showing effective results. By Chalkie providing his negative experience, we are aware that much must depend on the status of the individual. I will be looking forward to Chalkie's experience with Cabazitaxel/Jevtana, since here, too, is a medication we are still learning about with similar pros and cons.
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