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  1. Yesterday
  2. Steve - the micromets after RP eventually showed up via a steady PSA rise (to 33) and FDG PET/CT a a string of affected lymph nodes. I went on the usual journey of ADT (3 in my case) via intermittent treatment to eventual castrate resistance, but pre-chemo abiraterone and prednisone, with continued Zoladex and Avodart, brought my PSA down to its present level of 0.01. It's been hovering at 0.03 or less for many months now. Alan
  3. Thanks Alan, is your PCa castrate resistant? Mine is still hormone sensitive, but I see the trials are showing evidence for early abiraterone being beneficial for overall survival even in the hormone sensitive setting. Steve
  4. Last week
  5. Thanks Steve - UroOncToday is indeed a great site to monitor, along with a number of others like it. It's becoming clear that the name of the game nowadays is stratifying patients and intelligently customising their treatment, based on their individual histories being matched to the appropriate clinical trial outcome. Towards the end of his interview, Chris Sweeney also mentioned something that had previously escaped me, viz after having achieved an abiraterone/prednisone or an enzalutamide PSA <=0.02 (as in my case), consider switching to intermittent treatment (or possibly lower dose?) in order to avoid or minimise long-term co-morbidities like hypoglycemia, loss of bone density and muscle mass, abi-specific risks like hypertension and hypokalemia, and steroid-related risks, including liver enzyme issues. My medonc recently agreed to me halving my frequency of 0.5 mg/day dexamethasone steroid to 0.5 mg every second day, while maintaining 3-monthly testing of liver function, and adding ACTH (to monitor adrenal sufficiency with the lower corticosteroid in conjunction with the abiraterone). As far as I know there's no trial data on intermittent or lower dose abiraterone (other than with food), but with close monitoring the trade-off of risks in giving it a go seems worthwhile. I'll therefore raise with him the possibility of intermittent or lower dose abiraterone with continued close monitoring. I might even save the government some serious money! Cheers, Alan
  6. I came across this interview on Urotoday. A good short synopsis of the current state of research on treating metastatic disease. I've found Urotoday to be a great source of science/research based information. https://www.urotoday.com/video-lectures/prostate-cancer-foundation-scientific-retreat/video/mediaitem/1074-embedded-media2018-11-10-04-08-11.html You should not need to register to see the video. I have registered (it's free) and receive an informative weekly email. I have not received any spam.
  7. Charles (Chuck) Maack

    New drug Apalutamide (Erlyand) not approved for the PBS in Australia

    Sad that the PBAC failed to see the merit of this androgen receptor blocking medication that can hold off metastases for many months, while, apparently, enzalutamide will meet the same fate since the SPARTAN trial showed apalutamide had a longer range of effectiveness than that shown for enzalutamide in the PROSPER trial. It appears cost is the mitigating factor. We can hope that Janssen can see fit to offer the availability of apalutamide at a cost that will meet PBAC approval.
  8. Tony 1. Yes. This application was pre-chemo. 2. Abiraterone may come off patent soon. It was due to come off now, but Johnson & Johnson are fighting in the courts to extend the patent. 3. I don't know the length of the Enzalutamide patent, but we can expect a proposal that it should be used for the same type of man as Apalutamide was tested on - men with castrate-resistant prostate cancer who have no metastases. Jim
  9. Jim, Did Janssen's application involve use of Apalutamide pre chemo or post chemo or both. I presume pre chemo as PBAC indicate for non-metastatic castration resistant PC without mentioning chemo. PBAC seem to be worried about a treatment pathway where enzalutamide or abiraterone may be used after apalutamide No evidence yet of matching best drug to individual patients at whatever stage of the disease. Is it true that Abiraterone will soon come off patent and may then become a much cheaper generic drug? How long until Enzalutamide may do the same? Tony
  10. New drug Apalutamide (Erlyand) not approved for the PBS Jim Marshall (not a doctor) said ... The PBAC (the expert committee that recommends whether drugs go on the PBS) has said that it cannot yet recommend Apalutamide (Erlyand). The PBAC said if evidence longer life benefit comes in the future this could change. (The evidence so far is only that it will delay further treatment.) They also said there is no evidence yet about how successful Abiraterone (Zytiga) or Enzalutamide (Xtandi) treatment might be after Apalutamide treatment. The PBAC also said the price the company was asking was too high given the evidence put forward. They said they did take into consideration evidence from consumers (many of them our members - we thank you for that) the benefits of delaying further metastasis and symptoms getting worse. ... end Jim PBS: Pharmaceutical Benefits Scheme PBAC: Pharmaceutical Benefits Advisory Committee Drug: APALUTAMIDE Tablet 60 mg Erlyand® Janssen-Cilag Pty Ltd New listing (Major Submission) Purpose of submission: To request an Authority Required listing for the treatment of nonmetastatic castration resistant prostate cancer in combination with androgen deprivation therapy. PBAC outcome: The PBAC did not recommend the listing of apalutamide for the treatment of non-metastatic castration-resistant prostate cancer. The PBAC considered that apalutamide provided a substantial benefit to some patients in delaying metastases but the survival benefit was uncertain as the trial data were immature. The PBAC noted the consumer comments and acknowledged the potential quality of life benefits associated with delaying metastasis and symptomatic progression. The PBAC considered that the appropriate treatment pathway is unclear as there are insufficient data demonstrating the degree of efficacy of abiraterone or enzalutamide after treatment with apalutamide. The PBAC considered that it is likely that other treatments, such as enzalutamide, are likely to enter the same market space as apalutamide. The PBAC advised that the incremental cost-effectiveness ratio was underestimated due to the estimated gain in overall survival being implausibly high in the economic analysis presented. Sponsor Comment: Jansen was disappointed with the PBAC’s decision not to recommend apalutamide (ERLYAND®). Janssen welcomes the PBAC’S acknowledgment of the substantial benefit in delaying metastases and maintain that apalutamide is associated with a survival advantage. Janssen will continue to work towards a listing for this important product in the treatment of prostate cancer.
  11. Hi Jim, I've got a couple of DVDs of Mike Brady's 'Talk About It'. Do you want one? Alan
  12. Agenda Friday 14 December 2018 Today will just be a roundtable. The Brisbane Prostate Cancer Support Group used to have a singalong for the Christmas meeting. The star attraction was The Prostate Song sung by a local Brisbane man. I went looking for it on YouTube for this meeting, but could not find it. But, having twice been to theatre in the past few months with my friendly colorectal surgeon, this tickled me: You must dial in - we do NOT dial you. Landline - Anywhere in Australia - 25 cents Phone numbers only in email. Problem? Contact Jim. Apologies From. 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. Roundtable - new stories, updates, questions Any man who wishes 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. Disclaimer This Community does not give medical advice. No members are authorised 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 Daylight saving ends first Sunday in April Daylight saving starts first Sunday in October Mobile phone warning The costs of mobile calls are nothing to do with the Advanced Prostate Cancer Support Group 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. It's a meeting of 20 people, not a simple phone conversation. If you are not one of the two people in the particular conversation at the time, keep your mute button down and let others contribute. 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. Future phone-in support group meetings Fourth Friday of each month, except: January (One week late for Australia Day, making2 meetings in February) and December (One week early for Christmas) Phone-in support group meeting dates 2019 1 February (one week late for Australia Day) 22 February 22 March 26 April 24 May 28 June 26 July 23 August 27 September 25 October 22 November 20 December (one week early for Christmas) 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 sent to you because you are a member of the Australian Advanced Prostate Cancer Support Group. Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
  13. Earlier
  14. seafriend40

    Merv ALLAN. My Story.

    Recently had PSA Test, down from 61 to 24! Have now had second Lucrin Depo 45mg 6 month injection. Very sore bum for a couple of days but all is well now. Have another PSA test in June 2019, fingers crossed!!
  15. seafriend40

    Merv ALLAN. My Story.

  16. Certainly wishing you success with docetaxel. Possibly enzalutamide or abiraterone might work again following completion of the docetaxel series. Otherwise, it appears cabazitaxel/Jevtana may be the next medication to which to move.
  17. G'day Darby, Here's a short extract from a current December 2018 Symposium report that refers to a medication successfully trialled for hot flashes in women having breast cancer treatment. Mention is made of other drugs used for this purpose at the Mayo Clinic. You might want to follow up with your medicos whether any of these could be applicable to men with prostate cancer. Let's know how you get on. Cheers, Alan
  18. Admin


  19. What gives me concern is that this study looked at men treated “prior” to the approval and availability of abiraterone and enzalutamide pre-chemotherapy with docetaxel/Taxotere; thus, ADT to docetaxel was the prerequisite prior to availability of either abiraterone or enzalutamide. More recently, with the approval of these two medications “prior” to having to move to chemotherapy, I would be more interested in the overall survival (OS) or length of time prior to PSA elevation following prescribing of either abiraterone or enzalutamide – or the one after the other if one or the other showed failure – prior to having to move to the more toxic docetaxel or cabazitaxel. But with the foregoing being said, in my research men with high grade prostate cancer at diagnosis are recommended to ADT and “immediate” docetaxel followed after completion of docetaxel series by enzalutamide added to the continuing ADT; not necessarily directly to cabazitaxel. I have involved myself in deep research and study regarding androgen deprivation therapy (ADT) since this became “my life,” and earlier treatment for men with high grade and likely already metastasized prostate cancer at diagnosis. My personal results are explained in the following paper. Please note that I try to look at when to begin ADT and when to move to docetaxel. Note, too, that a couple of the reference url’s no longer open indicating the originating source has removed their article – likely either because newer info has become available or they set a time limit before removing their articles from their website. The very thought that we must move beyond either surgical removal of the prostate or radiation to the prostate and its periphery is disconcerting. Thus, we patients have to educate ourselves so that when any further treatment is necessary, we have a pretty good idea from what we have learned would be most appropriate for each of us depending on diagnostics. My research and understanding have served me well for 22 years post my recurrence and still not having to move to chemotherapy with the toxic drugs docetaxel/Taxotere or cabazitaxel. http://www.theprostateadvocate.com/pdf/Triple Hormonal Blockade ADT3.pdf
  20. ADT not enough. What is the best order of treatment? Jim Marshall (not a doctor) said ... This study is about: men with prostate cancer that has spread, and whose hormone therapy (ADT) is no longer enough to stop their PSA rising. More technically these men are said to have metastatic castration-resistant prostate cancer (mCRPC for short). After their PSA began rising after hormone therapy men in this study had two or three of the following treatments: DOC: Docetaxel (Taxotere) CABA: Cabazitaxel (Jevtana) ART: Either enzalutamide (Xtandi) OR abiraterone (Zytiga) but not both. This study compared different orders of giving the treatments. It turned out that the sequence: ADT ➜ DOC ➜ CABA ➜ ART had the best survival. (That is, men who had Docetaxel, then Cabazitaxel, then one of Enzalutamide or Abiraterone lasted longest on average.) But The best clinical trials recruit patients specifically for the trial (prospective) and then follow them. This trial was not prospective. The figures were gathered from records of men who had already been treated (retrospective). Your doctor will not regard this evidence as strong as a prospective trial. Your doctor will probably not yet have taken this research into account. It was published in August 2018. The survivals given are median (a type of average). Half the men lived longer than the median, some much longer. ... end Jim Clin Genitourin Cancer. 2018 Aug;16(4):e777-e784. doi: 10.1016/j.clgc.2018.02.016. Epub 2018 Feb 23. Results of the FLAC European Database of Metastatic Castration-Resistant Prostate Cancer Patients Treated With Docetaxel, Cabazitaxel, and Androgen Receptor-Targeted Agents. Angelergues A1, Efstathiou E2, Gyftaki R2, Wysocki PJ3, Lainez N4, Gonzalez I5, Castellano DE6, Ozguroglu M7, Carbonero IG8, Flechon A9, Borrega P10, Guillot A11, Balea BC12, Le Moulec S13, Esteban E14, Munarriz J15, Rubio G16, Birtle AJ17, Delanoy N1, Bellmunt J18, Oudard S19. Author information In Library ! Abstract BACKGROUND: Several agents have demonstrated an overall survival (OS) benefit in patients with metastatic castration-resistant prostate cancer (mCRPC); however, the optimal sequencing of these therapies is unknown as a result of a lack of prospective randomized controlled trials. This retrospective study aimed to identify clinical factors influencing outcomes and to determine optimal treatment sequencing in patients with mCRPC treated with cabazitaxel (CABA) and/or androgen receptor-targeted agents (ART) after androgen-deprivation therapy (ADT) and docetaxel (DOC). PATIENTS AND METHODS: Records of 574 consecutive patients treated (2012-2016) at 44 centers in 6 countries were retrospectively examined. RESULTS: A total of 267 patients received ADT → DOC → CABA (group 1), 183 patients ADT → DOC → ART → CABA (group 2), and 124 patients ADT → DOC → CABA → ART (group 3), with respective median OS from diagnosis of mCRPC of 38.3, 44.45, and 53.9 months (P = .012 for group 3 vs. group 1). Multivariate analysis showed response to first ADT ≤ 12 months, Gleason score of 8 to 10, clinical progression, and high prostate-specific antigen levels at mCRPC diagnosis were associated with worse OS. Prior receipt of ART did not influence activity of CABA. CONCLUSION: OS appeared to increase with the number of life-extending therapies, with a sequence including DOC, CABA, and an ART providing the greatest OS benefit. Copyright © 2018 Elsevier Inc. All rights reserved. [Highlighting and colouring (except the title) by Jim and not the author.] KEYWORDS: ART; Metastatic CRPC; Survival; Taxanes; Treatment sequence PMID: 29550200 DOI: 10.1016/j.clgc.2018.02.016
  21. I also suffer from anxiety & non anxiety related flushing and sweating whilst on ADT.
  22. Interesting thanks Chuck. In my case I was on an abiraterone (plus or minus apelutimide) trial, and the abiraterone lasted two years before a spectacular failure which resulted in multiple new bone and lymph mets. They then tried enzalutimide, but it had no effect on PSa and only made me sick. I am currently receiving docetaxel, which seems to be working so far - 6 doses. PSMA PET scan in two weeks should tell.
  23. The foregoing article discusses adding abiraterone to enzalutamide when enzalutamide is showing failure. Interestingly, if abiraterone acetate (AA) is prescribed separately apart from adding to enzalutamide following enzalutamide failure – and if chemotherapy had not yet been administered - this paper in 2016 remarked that AA was at least modestly effective in PSA response. Also, the progression-free survival (PFS) and overall survival (OS) with subsequent AA following enzalutamide failure was comparable to that of the earlier enzalutamide. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5069876/ Unfortunately, the length of effectiveness with abiraterone replacing enzalutamide appears to be measured in few rather than lengthy months.
  24. Kerry, Thanks for the info none of which I was aware of. I've taken notes and will discuss it with my oncologist at the next appt. Regards, Ron
  25. No apology necessary, Kevin. 🙂 We have to take in so much info when dealing with PCa that it can be confusing. If my wife didn't come along to my appointments, I would forget half what the doctor said.
  26. Adding abiraterone after enzalutamide fails does not help enzalutamide responders Jim Marshall (not a doctor) said ... In short Enzalutamide can be given before chemotherapy. For some men it works to hold their PSA. But eventually it stops working. Doctors wondered if adding abiraterone to the mix at this stage would help. It did not. More detail Enzalutamide can be given before or after chemotherapy with docetaxel. This study looked at men who were having enzalutamide before docetaxel chemotherapy. Men whose PSA had not risen at week 21 were called responders. When these responders did later have their PSA rise, half had abiraterone added, half didn't. There was no difference between the two groups ... end Jim Abstract Purpose Enzalutamide resistance could result from raised androgens and be overcome by combination with abiraterone acetate. PLATO (ClinicalTrials.gov identifier: NCT01995513) interrogated this hypothesis using a randomized, double-blind, placebo-controlled design. Patients and Methods In period one, men with chemotherapy-naïve metastatic castration-resistant prostate cancer received open-label enzalutamide 160 mg daily. Men with no prostate-specific antigen (PSA) increase at weeks 13 and 21 were treated until PSA progression (≥ 25% increase and ≥ 2 ng/mL above nadir), then randomly assigned at a one-to-one ratio in period two to abiraterone acetate 1,000 mg daily and prednisone 5 mg twice daily with either enzalutamide or placebo (combination or control group, respectively) until disease progression as defined by the primary end point: progression-free survival (radiographic or unequivocal clinical progression or death during study). Secondary end points included time to PSA progression and PSA response in period two. Results Of 509 patients enrolled in period one, 251 were randomly assigned in period two. Median progression-free survival was 5.7 months in the combination group and 5.6 months in the control group (hazard ratio, 0.83; 95% CI, 0.61 to 1.12; P = .22). There was no difference in the secondary end points. Grade 3 hypertension (10% v 2%) and increased ALT (6% v 2%) or AST (2% v 0%) were more frequent in the combination than the control group. Conclusion Combining enzalutamide with abiraterone acetate and prednisone is not indicated after PSA progression during treatment with enzalutamide alone; hypertension and elevated liver enzymes are more frequent with combination therapy. Full article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6118405/
  27. Hi Darby, On Androcur, my urologist prescribed it for me, but it played havoc with my brain so we dropped it after two weeks and went to Lucrin instead. On your low testosterone levels, they are certainly cause for concern. While low levels certainly help with PCa control, I would be concerned that such low levels may cause further side effects, such as decreasing bone mineral density and possible changes to the LDL / HDL make-up of your cholesterol. I am guessing your med onc is well aware of this, and after 18 months on Lucrin has probably scheduled you for a bisphosphonate infusion to stregthen your bones. Be aware that one of them, Zometa, can give you short term side effects (like the worst flu you ever had) and should be administered over an extended time through the drip. Keep up the good fight Kerry
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