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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.
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Editor’s Pick:11,201 could be an alltimer’s AnCan record opening PSA – and now it’s undetectible!! (rd)
Topics Discussed
PSA of 11,000+ drops to undetectible!; Keytruda sensitivity test for a BRCA2 guy entering trial; abi or PARP for another BRCA2 man; AnCan stalwarts uses BAT until Lu177 PSMA available; Lu177 PSMA Manaed Care Access trials; lipid panel discussion and new drug that cuts LDL; Embr hot flash gizmo in action; IMRT or SBRT when treating the gland alone for Mx men; side effects during treatment from gland IMRT start to hit; can a man with recurrent PCa consider a drug holiday?; serious rash from Orgovyx is news to Myovant
Chat Log
Jim Ward (to Everyone): 3:04 PM: You’re cat is way too uptight, Jimmie.
Jimmy Greenfield (to Everyone): 3:06 PM: Stressed!
Joe Gallo (to Organizer(s) Only): 3:30 PM: Would a PSMA PET be helpful – more sensitive for mets
Jake (to Everyone): 3:32 PM: peterk@ancan.org
Carlos Huerta (to Everyone): 3:42 PM: It is being done UCLA. Dr Weidhause is collecting the data.
Carlos Huerta (to Everyone): 3:47 PM: I believe it is called MiraDx. Your Onc can call her and have the mouth swab sent out. Joanne Weihaas MD. They are checking for a KRAS-variant. Regarding the Keytruda sensitivity test/study?
Len Sierra (to Everyone): 4:20 PM: Findings of a Phase III imaging study, unveiled at the American Heart Association’s annual conference, show that adding Repatha (evolocumab) to statin therapy resulted in statistically significant regression of atherosclerosis in patients with coronary artery disease (CAD), indicating the drug might offer a key advantage over statin therapy.
Len Sierra (to Everyone): 4:45 PM: Published online 2016 May 6. doi: 10.3389/fonc.2016.00114 PMCID: PMC4858516 PMID: 27200300 Intensity-Modulated Radiation Therapy with Stereotactic Body Radiation Therapy Boost for Unfavorable Prostate Cancer: The Georgetown University Experience
Pat Martin (to Everyone): 4:49 PM: See you all next Monday
John Ivory (to Everyone): 4:57 PM: One other way to ask the question–instead of asking if you’re getting sbrt, why not say, “I talked to someone who got sbrt and it only took 5 sessions. Can you tell me why it will take me so many more?”
Len Sierra (to Everyone): 4:58 PM: Good suggestion, John!
Herb Geller (to Organizer(s) Only): 5:07 PM: I gotta go, sorry. I’m in the hot seat next week.
Jake (to Everyone): 5:07 PM: Night,
Herb kang (to Everyone): 5:07 PM: take courage to try
Herb Geller (to Everyone): 5:08 PM: I gotta go. See you next week.
Julian Morales (to Everyone): 5:10 PM: Gotta go too – see you next week. thanks!
Bruce Bocian (to Everyone): 5:11 PM: Ill be seeing Smulewitz this month! I see Vandeerweele tomorrow
Len Sierra (to Everyone): 5:13 PM: Dropping off, guys. See you next week!
Don Price Boulder colorado (to Everyone): 5:16 PM: see all next time…dinner time here.
Jake (to Everyone): 5:23 PM: Thanks Peter!
Gary Peters (to Everyone): 5:24 PM: Dropping off guys. Have a good week
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On July 28th, we had the pleasure of having Michael Bihovsky!
Michael shared his award-winning film and musical theater works, ranging from Les Mis parodies to full musicals about neuroplasticity to his brand new music video, Paperweight, which documents the COVID-19 pandemic experience through the lens of disability. Through this wide range of creations, Michael demonstrated how he has created music and art whose poignancy (and comedy) shines through not merely despite his struggles with the connective tissue disorder Ehlers-Danlos Syndrome, but because of those struggles.
Watch this incredible performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
On Aug 4th, Dr. Martin Tenniswood(Chief Scientific Officer – miR Scientific) spoke at our Active Surveillance Virtual Support Group with a special presentation titled “The Future of Liquid Biopsies in Active Surveillance”
Dr. Tenniswood is the co-founder of miR Scientific, which is developing a new liquid biopsy known as Sentinel. He has been searching for the “Holy Grail,” a liquid biopsy for prostate cancer, throughout his 40-year career. He spoke about his search and research in this arena.
We want to thank Dr. Tenniswood for answering questions!
To view the slides from this presentation, click here.
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
‘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.
Editor’s Pick:Today’s Group is bookended by discussions with two Virginians around seeking access to LU177 PSMA – it ain’t easy but we are getting there! (rd)
Topics Discussed
NE/small cell disease needs a different approach; more chemo …. & more… and more!; back to the Trial for BRCA man; don’t forget Ken Pienta!; T returns post HT; stretch out those cramps!; cardiologist totally misses interaction between abi and Eliquis; more SAM – statins, aspirin, metformin; calcifications in urethra – but not stonesl; how best to reach your doc; man in mid-IMRT; John I’s loss and more; can we find Lu177 PSMA before teh cancer spreads too far?; is it worh following up with another Axumin scan?
Chat Log
Herb Geller (to Everyone): 3:24 PM: His clinical trial was https://clinicaltrials.gov/ct2/show/NCT03315871. He had 2 vaccines and a bispecific antibody.
AnCan – rick (to Everyone): 3:32 PM: PROSTVAC is the vaccine!!
Jake Hannam (to Organizer(s) Only): 3:40 PM: If he’s concerned about docetaxel megadoses every three, he could try weekly as I did.. Antonarakis is leaving in September
AnCan – rick (to Everyone): 3:51 PM: https://clinicaltrials.gov/ct2/show/NCT04825652
Ken (to Everyone): 3:52 PM: just keep going… my friend
Jake Hannam (to Organizer(s) Only): 4:02 PM: My understanding is that only 5 to 10 percent of patients do not have PSMA and some docs even question if the PSMA scan is even necessary. Len is right about about adding the old FDG scan.
Ken (to Organizer(s) Only): 4:03 PM: Jake its a higher number… closer to 30 percent.
Herb Geller (to Organizer(s) Only): 4:04 PM: The deep dive actually said that scans were not really necessary for Lu177
This post is dedicated in loving memory of Lung Cancer Advocate Don Stranathan. May his memory always be a blessing to us all.
Friend of AnCan, and advocate Peggy Denis from The Insightful Breath had some great reflections on milestones as she hit a big cancerversary number, 5 years!
Peggy beautifully puts into words the ebbs and flows of what we experience during our years of having cancer, or a chronic illness:
Five years of saying hello, we are on this path together and goodby, it is an honor to know you – see you on the other side. Five years of devastatingly painful losses and still, five years of encouraging gains. During this five years we’ve maneuvered through a pandemic. Didn’t see that one coming but didn’t see cancer coming either so there’s that. Most importantly, five years of experiencing profound love and five years of living in the moment.
On July 22nd, we had so much fun once again with our very own Hannah Garrison (Artist, MS activist, and moderator for our MS virtual support group) lead our appropriately titled…”Art With Hannah Garrison“! It has a Saturday Night Live ring to it, don’t you think? She was requested to teach something relaxing and summer-y, and did she deliver!
We created an absolutely beautiful dusk beach setting, that is begging for a pineapple drink with a little umbrella in your hand. Last time we had an event to celebrate MS Awareness Month, but this time all were welcome. We saw members from our Blood Cancers, Prostate Cancer, Thyroid Cancer, MS Group, and more!
I promise this is SO easy and relaxing, so grab some supplies and have an hour of creative relaxation.
Supplies:
Acrylic paint or watercolor paint. (It will be watered down, so it doesn’t matter!) Colors – blue or aqua / dark blue / orange/ pink / purple. (colored pencils were also successfully used in this art project!)
Paint brush – round or flat.
Black crayon, but any dark color will be ok!
Water
Napkins
If you have any suggestions, or would like your art featured in the AnCan Art Gallery, please email me at alexa (at) ancan.org!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
