Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording Jan 4, 2021
Happy New Year friends … may it be safe and healthy. Welcome to our first group of 2021 along with a few new organizational rules that you’ll hear about.
Editors Pick The Group settles a new man freaked by his diagnosis.(rd)
Topics Discussed
New Canadian Gent wrestles with hot flashes and HT side effects; Optum Rx changes its formulary on a specialty drug; considering different LHRH drugs; back to chemo when low dose abi stops working; denovo MxPCa Dx challenges yet another man mentally; monotherapy darolutamide and abiraterone; Dr. Efstathiou goes AWOL; Prostate Oncology invokes concierge policy; seeing Dr. Singh at Mayo for the first time; always give your doc a list of questions; what to expect when starting chemo
Chat Log Jake Hannam (to Everyone): 6:02 PM:
Our moderators will rotate the meeting chair throughout the month – we are still working on the schedule, and will confirm next week. The meeting hosts will be Rick Davis, Len Sierra, Peter Kafka and Herb Geller. All of us will still do our best to attend evey meeting.
We will use our AnCan blog more frequently to inform you of key developments in the PCa world, rather than taking time at the beginning of meetings. So please sign up to our Blog in the right sidebar to stay informed https://ancan.org/blog/ .
Meetings will start promptly no later than 10 minutes after the appointed start time – 6 pm or 8 pm Eastern. Those arriving later than ‘Ten After’ are still most welcome BUT will be lower priority if they need time. Latecomers will be polled only after all those arriving on time have beeen addressed. Again, LATE means 10 minutes after the start time.
The Moderators are creating a list of questions to help structure the time we dedicate to new men at the start of each meeting. We are limiting new men to 3 per meeting; additonal men will be deferrd to the following week.
Mark Perloe (to Everyone): 6:10 PM: If you are not speaking, please mute your microphone.
Carl Forman (to Everyone): 6:21 PM: Curious if anyone has recently received a letter from their medicare drug plan informing you that your med will no longer be covered in 2021, and you will be paying full price?
Jake Hannam (to Everyone): 6:23 PM: I sure hope not! Medicare Part D?
Frank Fabish (to Everyone): 6:25 PM: I get my treatment through the VA due to Agent Orange. So no limitations.
Carl Forman (to Everyone): 6:25 PM: Yes, Part D coverage. My Olaparib, which has not cost me anything out of pocket, will now possibly cost me $13000-16000 per month!
John A (to Everyone): 6:34 PM: Venlafaxine; Depot Provera
Mark Perloe (to Everyone): 6:41 PM: Please check out GoodRx Gold. I found that I got my meds at a price much less than Part D. Abiraterone was going to be $800 on Part D and $300 on GoodRx Gold. Unfortunately, I now go to three different pharmacies to get my meds.
Len Sierra (to Everyone): 6:42 PM: cyproterone
Peter Kafka (to Everyone): 6:45 PM: I suspect that this year we will see lots of changes in the medical insurance world due to the pandemic and challenges that hospitals are facing. Just my intuition.
Mark Perloe (to Everyone): 6:48 PM: Zejula may be the cheapest. None of the PARP inhibitors are listed in GoodRx.
Len Sierra (to Everyone): 6:51 PM: Talazoparib trade name is Talzenna
Peter Kafka (to Everyone): 6:52 PM: If this is true about Olaparib it will be a problem for women dealing with BRCA2 & 1 mutations as well as some of us guys. I suspect that Women will object
Len Sierra (to Everyone): 6:52 PM: Zejula trade name is niraparib, the generic name.
Mark Perloe (to Everyone): 7:01 PM: For me, 500 abiraterone with food is great. T is undetectable. It actually appeared to be a higher level with the lower dose with food.
Mark Perloe (to Everyone): 7:07 PM: I think if the T is undetectable, then dosing doesn’t really matter. Is the T undetectable? If so, then I doubt increasing will help. I thought the Prednisone vs Dex is about blood pressure to protect against suppression of cortisol.
Jake Hannam (to Everyone): 7:10 PM: Len’s blog entry – https://ancan.org/safety-of-glucocorticoid-regimens-in-combination-with-zytiga-for-mcrpc-patients/
John Ivory (to Everyone): 7:12 PM: It looks like Abbvie expected to start shipping Lupron again last month (see Lupron Depot 3 month 2nd line in table): https://bit.ly/393xN4L Looks like Takeda (Japanese pharma co) produces Lupron & Takeda claims they had a mfg problem: https://bit.ly/3rVBMZS
Len Sierra (to Everyone): 7:12 PM: Johann de Bono is an author on this paper in BJC: Tumour responses following a steroid switch from prednisone to dexamethasone in castration-resistant prostate cancer patients progressing on abiraterone: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264443/
Mark Perloe (to Everyone): 7:13 PM: This randomized, Open Label Phase 2 study published in JAMA Oncology compared various dosing schedules of prednisone and one for dexamethasone which are used with Zytiga (abiraterone acetate). As you may know, some form of steroid is necessary for use with Zytiga to compensate for its inhibition of natural cortisol production. If not compensated, patients on Zytiga would suffer from a metabolic syndrome known as mineralocorticoid excess (hyperaldosteronism) resulting in hypertension and hypokalemia (low potassium) which could lead to metabolic alkalosis, tetany (muscle cramping) and irregular heart rhythms.
The various prednisone regimens included 5mg once per day, 2.5mg twice per day, and 5mg twice per day. Dexamethasone was given as 0.5mg once per day. For each of these subgroups, the following percentage of patients had no mineralocorticoid excess (a good thing!):
Prednisone 5mg twice daily: 70.6%; Dexamethasone: 70.3%; Prednisone 2.5mg twice daily: 60%; Prednisone 5mg once daily: 36.8%.
Jake Hannam (to Everyone): 7:30 PM: 21 Jan 8:00 pm – 10:00 pm Men ‘Speaking Freely’
Mark Perloe (to Everyone): 7:41 PM: About 30% of androgens come from adrenal and the Lupron does not drop adrenal androgen production.
Jake Hannam (to Everyone): 8:10 PM: neulasta