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
3 new 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=ancan
…… 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-stomatitis/?r=ancan
Editor’s Pick: We discuss ‘compassionate use’ of Lu177 this week … and much more! (rd)
Topics Discussed
Complications around follow up after R2 Lu177 trial fails; Compassionate Use; Tx options after 12mo. drug holiday; Orgovyx Ambassador; rashes from both Lupron and Orgovyx; pushback on getting testosterone tests; post-RP hernia; Embr experience; peripheral neuropathy issues; doctor willing to push darolutamide; long term chemotherapy use; processing information on reports from pathologists and radiologists; BiTE AMG 509 experience; cytokine storm report
Chat Log
Jake Hannam (to Everyone): 7:39 PM: cyclophospamide with steroid
Jake Hannam (to Everyone): 8:11 PM: my oncologist recommended Viamin B6 for PIN
Jake Hannam (to Everyone): 8:46 PM: AMG 509 is a bispecific antibody that binds to two different proteins; one found on the surface of cancer cells and one on the surface of T cells in the immune system. Researchers think that AMG 509 may strengthen the immune system’s ability to fight cancer cells. It is given intravenously (by vein).
John Antonucci (to Everyone): 8:47 PM: thanks Jake
For the Embr hot flash control gizmo, visit https://myrcc.redcapcloud.com/?#join=… if you signed up and have not heard back from Embr, make sure you signed your Informed Consent. Check your email OR call Embr.
Editor’s Pick:Prednisone may just be a side drug to abiraterone acetate but hear what happens when your medical team fails to mention weaning off it when you stop abi – it’s BAD!! And we run cross two cases where an RO might just be thinking more about billings than patient welfare.(rd)
Topics Discussed
older gent never advised to wean off pred & lost 60# – next?; treating the primary (prostate gland); Lu177 PSMA trials; participant reports on Ac225+pembro+ enz trial; CTC explanation; Botox for bladder spasms; Pylarify used to check ‘discordant’ lesions; Antonarakis on the move; cyclophos’ stops being effective; finding Pylarify (see above); PSA moving up; ibuprofen vs tamsulosin (Flomax) for post RT frequency/urgency; RO’s, deep pockets & integrty – caveat emptor!
Chat Log
Jake (to Everyone): 5:13 PM: Welcome all!
Ted Healy- Portland, OR. (to Everyone): 5:25 PM: Have to go folks. Thank you!
Pat Martin (to Everyone): 5:25 PM: Somatic testing?
carl forman (Private): 5:32 PM: FYI. I have a film crew coming to my home this Wednesday for the video project on men living with advanced prostate cancer, that you had referred me to. Thanks.
Stan Friedman (to Everyone): 6:07 PM: Dr. Borys Mychalczak. He is the chief, radiation oncology at MSK Westchester & MSK Bergen
Rick Davis (to Organizer(s) Only): 6:23 PM: Prof Bill had this Tx!
Joel Blanchette, Reston, VA (to Everyone): 6:42 PM: (From Dr. Antonarakis) I have left Johns Hopkins, and I am not able to provide any professional advice at the moment (sorry). Please make an appointment to see Dr Sam Denmeade, so that you remain connected with a medical oncologist at Johns Hopkins. I have no idea how anything will work at the University of Minnesota, nor what needs to be done to transfer records. It may be a while before I am able to see patients there, because I am not fully credentialled in the state of MN and I don’t know how long that will take. Thanks for your patience, and please connect with Dr Denmeade in the meantime.
Rick Davis (to Everyone): 6:46 PM: Sorry Gents – just got knocked off. We are having a big monsoon.
Mark Perloe – Atlanta (to Everyone): 7:00 PM: Good evening. Have to run.
Alan Moskowitz (to Everyone): 7:02 PM: Time to leave . Goodnight all.
Bob Smith (to Everyone): 7:07 PM: My onclolgist has ordered a CT and bone scan in October. As of 3 months ago, a bone scan showed 5 suspected bone mets and one almost certain bone met. If the next ct/bone scan series shows lots of mets, would a PSMA ga 68 likely give me any additional actionable information? Or, should I go for the PSMA ga 68 test instead of the ct/bone scan series. I am a VET so I could fly from HI to West LA for another PSMA ga 68.
Herb Geller (to Everyone): 7:09 PM: I would think that a PSMA PET scan would be in order. It will give more information
Len Sierra (to Everyone): 7:09 PM: I agree with Herb on the PSMA PET.
Joe Gallo (to Everyone): 7:11 PM: Bob. VA at WLA PSMA PET is using Pyl and is available at no cost to Vets. It is significantly more detailed than a Bone or CT scan. I can give you contact info if you want.
Bob Smith (to Everyone): 7:12 PM: Thanks everyone. Joe, I have the contact info. Julian Morales (to Everyone): 7:21 PM: Thanks for the great discussion! See you next week.
‘For the Embr hot flash control gizmo, visit https://myrcc.redcapcloud.com/?#join=… if you signed up and have not heard back from Embr, make sure you signed your Informed Consent. Check your email OR call Embr.
Editor’s Pick: The importance of having a strong GU med onc to quarterback your treatment is revealed when a man finds himself shunted from trial to trial. rd)
Topics Discussed
Dealing with another recurrence after 20 yrs – can you radiate ribs?; adding back a 2nd lin AR after brief holiday; salvage RT working; low PSA shows no PSMA result; HDR procedure; coming up; choosing the right 2nd line anti-androgen; back door Nubequa via Technetium 99 scan; find strong GU med onc to QB your treatment to prevent succession of trials; debulk primary?; one too many opinions???
Chat Log
Herb Geller (to Everyone): 5:19 PM: Dr. Chadha is Hem/Onc with some interests in GU, but not a GU specialist
Larry Fish (to Everyone): 5:22 PM: ? if psma shows spread to bone – why plan to radiate lymph again – before results of ADT are in, etc.
Herb Geller (to Everyone): 5:29 PM: If It were me, I’d go to Dr. Jinsong Zhang at Moffett. He is trained in GU with good credetials.
Rick Davis (to Everyone): 5:30 PM: We know men who have seen Chahoud and are happy with him
Bill Franklin (to Everyone): 5:31 PM: I know two individuals who have gone to Dr. Julio Pow-Sang at Moffitt. Also GU with good credentials.
Rick Davis (to Everyone): 5:33 PM: Pow Sang is a urologist
Bill Franklin (to Everyone): 5:35 PM: Pow Sang is Department Chair of the Genitourinary Oncology Program at Moffitt. I know him from that aspect and assumed he was a GU.
Len Sierra (to Everyone): 5:53 PM: Jimmy G, Carl said he will pay you in grapefruit currency!
Jim Greenfield (to Everyone): 5:55 PM: Ok but the inlfation is murdurous these days
Alan Moskowitz (to Everyone): 5:58 PM: Have to leave now. take care everyone.
Ted Healy (to Everyone): 6:21 PM: Anyone visiting Portland, please do touch base with me at phoenix4357@gmail.com . Absolutely!
Bruce Bocian (to Everyone): 6:30 PM: None at all, .20, .18, .24, .27 . Have to run, thanks for doing all you do!
Joe (to Everyone): 6:47 PM: Gents, great to see y’all again. Gotta run. Thanks all. Joe
James Schraidt (to Everyone): 7:06 PM: Gotta go. Best to all.
Bill Franklin (to Everyone): 7:13 PM: I’m up very early tomorrow morning so I’ve got to go. Take care all.
Len Sierra (to Everyone): 7:14 PM: Also must close out, guys. See y’all next week!
Joe Gallo (to Everyone): 7:16 PM: Me too. My appointment is a 715am. Good call.
Dennis McGuire (to Everyone): 7:19 PM: where did Antonarakis go ?
Jake (to Everyone): 7:20 PM: University of Minnesota, 1 September
Herb Geller (to Everyone): 7:21 PM: The NIH trial that Brian is talking about combines taxol with two anti-immune antibodies.
David Plunkett, KCMO (to Everyone): 7:24 PM: I’ll try again next week.
On July 29th, we hosted an informational webinar titled “Is Gleason 6 Really Prostate Cancer? – A Debate!“.
Dr. Ming Zhou (Pathologist-in-Chief and Chair of Anatomic and Clinical Pathology, Tufts Medical School), and Dr. Scott Eggener (Vice Chair of Urology at the University of Chicago), each presented their cases at the AnCan program in this video.
Dr. Zhou took the view that if it looks like a cancer, which Gleason does under the microscope, then it’s a cancer. One of Dr. Eggener’s key points, in response, is that he has never seen a patient die from Gleason 6 so why call it a cancer.
The question-and-answer period covered such issues as whether a high-volume Gleason 6 is more risky than a low-volume Gleason 3+4=7. Dr. Eggener argued that these Gleason 6’s can be risky. He also said not enough men with 3+4 go in AS. The doctors engage in an informative and entertaining cross-fire discussion that should not be missed.
So who won? Our poll showed that before the debate: that 55% of respondents thought Gleason 6 is a cancer, while 10% thought it wasn’t a cancer. 35% were unsure.
The numbers changed dramatically after the debate: Only 22% thought Gleason 6 is cancer, 47% said Gleason 6 is not a cancer, and the remaining 31% were unsure. Dr. Eggener clearly won the debate.
The following day, Dr. Zhou got back to us saying:
“Dr. Eggener has won me over. I am now in his camp. I just proposed to work together to educate pathologists on this topic. As you know, I am also the president of Genitourinary Pathology Society (GUPS, an international GU pathology society). I will do my part to change the name.”
Rick’s view on the webinar is simple: “If there’s a real winner from this debate, it’s that AnCan is bringing the sides closer together!”
I happen to agree!
Watch the must see debate here:
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
