All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/
Editor’s Pick: AnCan recomnmends a QB GU med onc to two gents (rd)
Topics Discussed
Newbie neds to find a QB GU med onc; finding ways to save on abi; waiting to finish up radionuclide trial; Ben’s started a blog; back in biz with Pluvicto; Orgovyx Ambassador Frank has good outcome; Hawaii gent needs a GU med onc QB; Keytruda is next treatment; chemo brings results for rare type of PCa; consider Provenge before chemo
Chat Log
AnCan – rick (to Everyone): 3:18 PM: EMBr Discount for AnCan’rs …. ‘ANCAN50
Mike Yancey (to Everyone): 3:22 PM: QuickRx at 347-691-3494 for Abiraterone 1000mg for a month
Pat Martin (to Everyone): 3:24 PM: I use Expess Scripts subsid by the name of Accredo. I pay 6.60 per month. Benefit through Carpenter union
George Rovder Arlington VA (to Organizer(s) Only): 3:24 PM: Search GoodRX for discount up to 98% in your area. https://www.goodrx.com/zytiga
George Rovder Arlington VA (to Organizer(s) Only): 3:25 PM: GenitoUrinary Medical Oncologist
George Rovder Arlington VA (to Everyone): 3:25 PM: Search GoodRX for discount up to 98% in your area. https://www.goodrx.com/zytiga
George Rovder Arlington VA (to Everyone): 3:59 PM: Thank you Ben.
AnCan – rick (to Everyone): 3:59 PM: Great idea …. thanks Ben
John Antonucci (to Everyone): 4:03 PM: Oh that looks good Ben thanks. pictures and all.
George Rovder Arlington VA (to Everyone): 4:16 PM: Congratulations Frank.
Bob McHugh (Private): 4:37 PM: Dr. Oh orders T level EVERY time he orders PSA. 3 month intervals.
Len Sierra (to Everyone): 4:45 PM: PSA max of 4.0 V. rare form of PCa identified by Epstein as high grade foamy gland prostatic adenocarcinoma!! Gl undeterminable but =/greater than 7 per Dr. Epstein. Has only seen 21 cases. Lung spots seen.
Pat Martin (to Everyone): 4:47 PM: That should be SOC….can’t tell you why I slipped up on being INSISTENT on getting it checked. Some of the trials showed Abbie effective for 5 yrs. I got a couple more years, so we knew it was time to check T.
Ben Nathanson (to Organizer(s) Only): 4:49 PM: If I recall right, foamy gland is itself not a bad diagnosis and not too uncommon mixed with acinar. I think what surprised Epstein is not the foamy but that it’s a high-grade foamy
Julian Morales – Houston (to Everyone): 4:51 PM: Have another meeting at 7pm CT. Talk to you all next week!
Pat Martin (to Everyone): 4:59 PM: See ya all next week…Thanks to all!!
AnCan – rick (to Everyone): 5:00 PM: MPCP https://mpcproject.org/ MPCP = metastatic prostate cancer project
On June 29th we hosted a webinar that we know you’ll love to share! Titled “Genetic and Genomic Testing The How’s, Why’s and Where’s“, you’ll get a crash course on everything genetic and genomic testing related.
AND – if you’re a Vet, watch this space. AnCan will be launching a new Vets Group to help navigate medical care. It is not exlclusively prostate cancer, so tell Vet friends. 4th Thursday starting June. If you want to sign up please write Group Leader Joe Gallo joeg@ancan.org.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Prostate Cancer can occur in the testes!! And plenty of Provenge(rd)
Topics Discussed– long session this week with 2 newbies and 12 folks needing time!
Recurrent PCa does not respond to intermittent cycles; confined recurrence of focally treated high risk PCa; keeping the cancer offguard; Provenge – 2nd time today and not the last; IHT starting; Dr. E prescribes Pluvicto; Trimix experience; darolutamide beter than enz; remembering Hawaian Bob Smith; peritoneal implants (lesions) return; testicualr PCa lesion; UCLA refunds PSMA cost; lo-dose abi with food; pros & cons of self-cathetering; when to move on from chemo; morning fatigue and adjusting darolutamide dose; Provenge tips – again/finally!
Stephen Saft (to Everyone): 6:34 PM: I am going to say goodnight. Thanks
Joe Gallo (to Everyone): 6:43 PM: Vets interested can send me an email or drop in. Joeg@ancan.org
John Birch (to Everyone): 6:58 PM: Need to sign off, appreciate the discusssions tonight.
Frank Fabish – Ohio (to Everyone): 7:04 PM: thanks guys allowing me to give an update. Can’t make it next Tuesday.
Pat Martin (to Everyone): 7:07 PM: I’ll catch you next Tuesday. Good meeting
Mike Yancey (to Everyone): 7:15 PM: Got an early morning, so need to drop before we complete tonite. Lots of good discussion.
Julian Morales – Houston (to Everyone): 7:26 PM: need to drop off – another great meeting, Glad to be able to relate my experience to this community. All the best to everyone!
Non-Medical switching ….. know what we’re talking about?
In the patient advocacy world, Non-Medical Switching has been a major topic this year.
Non-Medical switching happens when the insurance provider forces a switch to an alternate medication, usually less expensive, to the one your health care provider prescribed. In certain HMO’s, it may actually be your HCP who switches or prescribes a less than optimal drug. AnCan sees this frequently with Kaiser Permanente.
The switched medication frequently may not work as well. For some conditions that can be devastating … for example with mood stabilizers prescribed for mental health care. A recent survey by the Alliance for Mental Heath Care Access (AMHCA) showed that 40% of patients taking medication to maintain stable mental health did worse when switched. Consequnces can be tragic.
In March, I was in Washinton DC to lobby for the American Urology Association. Switching was one of our talking points with Federal legislators. AnCan also partners with the Alliance for Patient Access (AfPA), a parent organization to AMHCA. With Mental Health Awareness Month coming up, they have just published an attention-grabbing report addressing medcial switching. Read it at https://instituteforpatientaccess.org/non-medical-switching-pushes-patients-to-the-brink/
AnCan continues to advocate on behalf of all our patients. We take Mental Health programming very seriously and now offer 5 related programs:
AnCan’s Art Director and MS Moderator, Hannah Garrison, Honored!
The Multiple Sclerosis Association of America has recently recognized one of AnCan’s favorite moderators, Hannah Garrison as their Annual 2022 Benefit Honoree!
AnCan LOVES Hannah ….. she is a longtime moderator of our MS Groups AND leads the AnCan Art Program that teaches everyone that no matter your abilities, art is not out of reach. Check our AnCan Art Gallery to see the work Hannah has helped our participants create. Btw, that program will be back in 2022 with 4 sessions before year end – and we’ll be providing FREE art supplies!
Every year, MSAA names one corporate honoree, and one from the MS community. This year
Hannah was recognized as the MS Community Member of the Year,. She has been working with the
MSAA to lead and develop their “Improving Lives Through Art” Paint-Along series throughout 2021 – a program that we beta-tested here at AnCan.
This is amongst MSAA’s newest set of virtual fundraising events in which participants paint a predetermined subject together in a virtual “classroom”, instructed by Hannah. Hannah sets the subject, MSAA sends the supplies off to participants’ homes, and everyone who joins in has a chance to create a special piece of artwork with family or friends together with everyone in the virtual room. The program is a huge success, and continues to support the MSAA’s mission to fund programs specifically for the MS community.
Hannah is adamant that the visual arts were a stepping stone in her recovery from the grueling effects of multiple sclerosis. One day she decided she’d had enough, and began working through her mental struggles, cognitive struggles, and physical struggles via the process of making art. Now Hannah Garrison uses art as a safe space to explore her struggles and to sit with them – never to judge or belittle any result that takes place … or for that matter anything that arises along the way!
Hannah has AMAZED some of our AnCan particpants who have told us they never thought they had this creative talent within them.
You can read about Hannah here, and learn more about the MSAA Benefit which took place on May 5 th in-person and May 12th virtually, here.
Watch out for our four (4) 2022 Art with Hannah sessions, coming soon. You can reach Hannah Garrison at hannah@ancan.org if you want to be sure to receive an invite to AnCan’s classes – they are open to all.
In the patient advocacy world, Non-Medical Switching has been a major topic this year.
AnCan LOVES Hannah ….. she is a longtime moderator of our MS Groups AND leads the AnCan Art Program that teaches everyone that no matter your abilities, art is not out of reach. Check our