Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 12, 2021
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/.
Editor’s Pick: How do you explain to your medical team that AnCan is a great resource – some guys address that this week (unsolicited!!!)rd
Topics Discussed
High Risk diagnosis poses treatment questions; composing questions to ask your doc; addressing lung nodules; intestinal issues from enzalutamide???; testosterone is flowing back; talking to your medical team about AnCan; using Trimix; serial chemo may not be working; Caregiver has dad resisting treatment; trouble switchng medical oncologists.
Chat Log
Sylvester Mann (to Everyone): 3:32 PM: Good seeing you also. I’m doing ok. I have not been attending because I get the time mixed up plus I not usually home at this tine (smile).
Herb Geller (to Organizer(s) Only): 3:40 PM: So I got into Reel Recovery for next Monday. https://reelrecovery.org
Jake Hannam (to Organizer(s) Only): 3:41 PM: Congrats! Have fun!
Bill Franklin (to Organizer(s) Only): 3:42 PM: Man! Rick told me about that and I looked at it but will have to plan carefully in order to get in there. I hope you have a great time!
Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Oct 4, 2021
(Apologies for the multiple confusions re. links and disappearing videos on YouTube! Thanks to RS for the heads-up and hopefully we have resolved and this works fine: rd)
2 survey opportunities still open …… and AnCan receives a donation for each approved respondent.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a…
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Lots of talk this week about switching docs and when to get a GU med onc involved.(rd)
Topics Discussed
Chemotherapy and mood swings; exercise duing chemo; can you avoid HT with advanced disease?; when’s the time to switch to a GU med onc?; Pylarify vs Ga68 PSMA R11; with advanced disease, is 0.298 a low enough nadir?; 2nd pembro dose after cytokine storm; pancreatic spot stable; 1st cabazitaxel tolerable; daily prednisone w. chemo???; GU med onc refuses to measure testosterone; using ibuprofen
Chat Log
Len Sierra (to Everyone): 5:37 PM: Genitourinary
Alan Moskowitz (to Everyone): 5:51 PM: Just an update on the availability of Pylarify PSMA scans, Mt Sinai Hospital in NYC has just received written confirmation (Wednesday Sept 29) that Medicare will cover the standard 80% of the cost. They are currently scheduling. You can find out more by calling their PET/CT Nuclear Medicine lab at 212-241-7775. I was also advised that Medicare supplement insurers legally must pay their share if Medicare covers their share.
Stephen Saft (to Everyone): 5:52 PM: That is great! Thanks for the information.
Stephen Saft (to Everyone): 6:16 PM: I agree that people with prostate cancer should go to a Medical Oncologist that specializes only in Prostate Cancer. They are conversant with all of the research and new developments. There are new developments every day.
Stephen Saft (to Everyone): 6:18 PM: What is an R11 Scan?
Alan Moskowitz (to Everyone): 6:23 PM: Rick said the R11 relates to the Gallium PSMA scan available only in 2 California sites.
Stephen Saft (to Everyone): 6:30 PM: I heard that. I believe that Gallium 68 is the more common name for that scan. (NB…. there are several different ligands married to Ga68 that seek out PSMA. R11 is the FDA approved one at UCSF and UCLA. There are other ligands like R617 still awaiting approval. rd)
Joe Gallo (to Everyone): 6:32 PM: PSMA PET PYL is/will be more available as compared to Gallium-68 which requires a radionuclide generator on site due to limited half-life.
Jake Hannam (to Everyone): 6:33 PM: Good point, Joe.
Ted Healy- Portland, OR. (to Everyone): 6:58 PM: Gotta go folks. Thank you be safe!
Rick Davis (to Everyone): 6:59 PM: tx for your advice to Christo Ted
Joe Gallo (to Everyone): 7:06 PM: Nick is Dr. Berengi’s admin. He will give you the details and schedule. He is a very easy going guy. Probaby easier to contact. However Dr B is also a very personable guy and willing to talk.
Herb Geller (to Everyone): 7:18 PM: I gotta go. See you next week.
On September 29th, we hosted the webinar “Prostate Cancer – Active Surveillance and More…Past, Present, and Future“.
Featuring Laurence Klotz, MD, a pioneer in developing active surveillance and other areas dealing with prostate cancer, told a webinar about his journey as a urology researcher at Sunnybrook Health Sciences Center in Toronto. With over diagnosis and overtreatment of prostate cancer in the 1990s with the introduction of screening PSA testing, he and his colleagues set out to develop a new strategy of close monitoring of men with low-risk Gleason 6 prostate cancer.
He sees rapid advance of introduction of highly accurate “liquid biopsies” that focus on DNA shed in urine by tumors. He sees great potential in focal therapy.
Watch it all here:
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
We apologize, but slides are not available for this webinar.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
3 survey opportunities have come our way for you …… and AnCan receives a donation for each approved respondent:
…… if you are taking or have taken and stopped relugolix (Orgovyx), you can earn upto $200 for 80 min of your time, mostly a one-on-one interview. Or, upto $350 if you interview together with your caregiver. Please reach out to us via info@ancan.org and we’ll connect you.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a…
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Loads of cutting edge this week – cytokine storms from pembro or just an infection??? Two men fare diferently with Lu177 PSMA. And heed the warning – don’t pussyfoot when PCa first recurs – it may return.(rd)
Topics Discussed
Caregiver discusses 50+ husband’s metastatic disease; slow moving recurrence requires RT a SECOND time; exercise via a PT???; cytokine storm or just an infection – be sure before more pembro; two experiences from different Lu177 trials; is Pylarify Medciare approved?; agonist ADT resumed after 12-mo holiday with no buffer; low testosterone/metastasis are formula to get Covid booster
Chat Log
Bruce Bocian : 3:21 PM: Berger is our friends Urologist
Jake Hannam : 3:30 PM: Provenge since PSA is low right now?
Stephen Saft (to Everyone): 3:54 PM: Didn’t someone say they have been tolerating 20 Docetaxel treatments because of physical exercise
Len Sierra (to Everyone): 3:55 PM: That would be Iron Man Ken Anderson
Herb Geller (to Everyone): 3:56 PM: Exercise Preserves Physical Function in Prostate Cancer Patients with Bone Metastases. Galvão DA, Taaffe DR, Spry N, Cormie P, Joseph D, Chambers SK, Chee R, Peddle-McIntyre CJ, Hart NH, Baumann FT, Denham J, Baker M, Newton RU. Med Sci Sports Exerc. 2018 Mar;50(3):393-399. doi: 10.1249/MSS.0000000000001454.
Richard G. (to Everyone): 3:58 PM: Is the value of exercise more for the cardio (running)or for the strength (weights)? Probably both but does one win out over the other? rg
Len Sierra (to Everyone): 3:59 PM: Both are very important/
Richard G. (to Everyone): 3:59 PM: Was John’s recurrence after 10 years after RP caught by having PSA test every 3 months for the 10 years? rg
Maria Anderzunas (to Everyone): 4:00 PM: I wonder that same thing as Richard G with the exercise, cardio or streghth , which is best, both would be optimal I’m sure.
John Vandenberg (to Everyone): 4:02 PM: yes, PSA test every 6 months for 10 years before recurrence; must leave – shared computer – thanks very much I’ll be calling in – John
Richard G. (to Everyone): 4:04 PM: tks Richard G. (to Everyone): 4:19 PM: what is the trial name? what is the term sidocan storm?
John Antonucci (to Everyone): 4:20 PM: cytokine
Len Sierra (to Everyone): 4:20 PM: cytokine storm
Richard G. (to Everyone): 4:20 PM: tks
Herb Geller (to Everyone): 4:21 PM: Cytokine storm is a result of a massive reaction of the immune system to an insult. Cytokines are hormones released from immune cells that signal to other immune cells, but also affect other cells.
John Antonucci (to Everyone): 4:22 PM: I don’t think it can account for the destrution of the platelets???
Peter Kafka (to Everyone): 4:28 PM: The Keytruda test: IMUDX swab test The resuts came from Soomi Fabian-Aguilar. Indicated I was “Low Risk” for Keytruda. Ordered by Dr. Mark Scholz of Prostate Oncology Specialists. ImuDX Testing – MiraDxhttps://miradx.com › imudx-testing This test predicts the risk of developing immune related adverse events in response to anti-PD1 or anti-PDL1 treatment. Already performing ImuDx Testing? ImuDx …
Stephen Saft (to Everyone): 4:32 PM: is there a possibility that Lu 617 will be approved soon?
Len Sierra (to Everyone): 4:33 PM: John Antonucci: Hematological Side Effects of Immune Checkpoint Inhibitors: The Example of Immune-Related Thrombocytopenia https://www.frontiersin.org/articles/10.3389/fphar.2019.00454/full
Herb Geller (to Everyone): 4:33 PM: All the information we have says that early next year.
Alan Moskowitz (to Everyone): 4:33 PM: Do we know when Medicare will cover Pylarify? (DCF-Pyl – Psma scan)
Len Sierra (to Everyone): 4:35 PM: Alan, I don’t think that is known.
John Antonucci (to Everyone): 4:35 PM: thanks Len got the article
Alan Moskowitz (to Everyone): 4:36 PM: Len – I had heard that possibly it could be covered now, in a private radiology setting vs in a hospital. But have not been able to confirm.
Len Sierra (to Everyone): 4:37 PM: Hmm, that’s seems odd, Alan. You’d think it would be the opposite.
Alan Moskowitz (to Everyone): 4:38 PM: Len – something about ‘pass through’ status is required for hospitals to bill it. I had talked to a rep from the company that makes it, Lantheus, and there was some vague comments that the company was possibly reimbursing radiology centers for the difference in cost for pylarify vs generic tracer. Again – not so clear.
Richard G. (to Everyone): 4:44 PM: Why not a psma pet scan for Alan M?What is the other name for PSMA petscan? “pilarafy”?
Len Sierra (to Everyone): 4:50 PM: 18F-DCFPyL
Alan Moskowitz (to Everyone): 4:53 PM: Richard G – I have also searched for clinical trials for psma scan – but having been in 2 of these already , i have not found any that is relevant.
ALFRED LATIMER (Private): 4:55 PM: I need to leave. See you next time. Thanks again for all your and groups help
AnCan – rick (to ALFRED LATIMER): 4:55 PM: pleasure – stay in touch
A very interesting but challenging and thought provoking article came to AnCan’s attention last week published by ASCO’s Journal of Clincial Oncology. The AnCan prostate cancer moderators thought carefully about whether we should reblog it Ultimately we decided it was worthwile for all our prostate cancer community, and maybe others too.
Please let us know your thoughts via info@ancan.org – we will add them to this page. Your editor has already taken the liberty of including some moderator responses:
Just one editorial comment on A Dozen Eggs, especially with men in mind using estrogen patches. AnCan is not aware of any clinical evidence that increased levels of estrogen promote prostate cancer progression.
…. it is an excellent and thought provoking article. If presented in the right context and sensitivity it could be quite instructive and inspirational.
It is really a great piece.
I think it’s fine, although I’m a little concerned about the oncologist telling Evelyn that estrogen might make her prostate cancer worse. I’m not aware of evidence supporting that concern
Quite interesting and not something I even thought about. I’d say the majority of our “customers” are squarely in the heterosexual male category but I wouldn’t doubt that many of them may know someone similar to Evelyn. I have a work association with a transgender woman that I’ve known for 15+ years, well before the transition. I know from past conversations that she has not had reassignment surgery. It might be something she faces in the future. Now you have me wondering if they take the prostate out for reassignment surgery.
I have attended workshops discussing transgender issues in the medical world. The system mistreats and misunderstands transgender patients. Medical staffs humiliate them and ask for their birth names and to show their driver’s licenses.
If these patients undergo transformative surgery, they retain their prostates. So ironically, as much as they wish to change their identities, they need to undergo digital rectal exams and PSAs as part of routine care.
Change is coming slowly to accept these people in medicine and in the larger society.
