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!
On June 1st, we had the pleasure of world renowned Dr. Steven Kaplan speaking to our Active Surveillance Prostate Cancer virtual support group, in collaboration with ASPI, titled “It Ain’t Your Grandpa’s BPH – An ‘Urgent’ Issue“.
Dr. Kaplan is Director of the Men’s Wellness Program, Mount Sinai Health System and Professor, Icahn School of Medicine at Mount Sinai. He is an internationally renowned authority and one of the primary thought leaders in the study of benign diseases, the association of metabolic factors with voiding dysfunction, and female urology, with symptoms related to both benign prostate enlargement and bladder function.
Dr. Kaplan is a Diplomat of the American Board of Urology and a Fellow of the American College of Surgeons. He is an internationally recognized authority and one of the primary thought leaders in the study of benign diseases of the prostate, the association of metabolic factors and voiding dysfunction and female urology. He has over 1000 publications including 600 peer reviewed and 570 peer reviewed invited articles, and 90 book chapters and non – peered reviewed articles. His landmark study, published in JAMA in 2006, changed the way medications are used in the treatment of men with symptoms related to both benign prostate enlargement and bladder dysfunction.
You’ll hear about the latest advancements in BPH, how diet and sleep can impact your prostate (and overall) health, and more.
Watch here:
Special thanks to Pfizer and Bayer for sponsoring this presentation
We apologize for the inconvenience, but slides for this presentation are not available.
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.
On May 31st, we hosted a webinar full of great information for not just prostate cancer patients, but for all! Titled “Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer“, we learned best practices for the foods we eat, to how sleep apnea can impact our whole health.
The program features Dr. Stacy Loeb, professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center, and Dr. Justin Gregg, Assistant Professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston. Dr. Gregg discusses his research on diet. Dr. Loeb discusses her research on a plant-based diet, sleep, and exercise.
Watch here:
Editor’s Note: Dr. Stacy Loeb and colleagues at NYU Langone Health are doing a research study about sleep and lifestyle for men with prostate cancer and their partners and/or family members. Participation involves visiting a website designed by the study team with recommendations about sleep, nutrition and exercise, completing online surveys, wearing a wrist watch to measure activity for a total of two weeks, visiting a website, and two telephone calls with the study team. Gift cards will be provided as reimbursement for study completion.
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:
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 16, 2022
Two upcoming events to mention first ….. Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer with Drs. Stacy Loeb (NYU) and Justin Gregg, Tue, May 31 @ 8.00 pm Eastern. Register at https://register.gotowebinar.com/register/4324977789022538512
It Ain’t Your Grandpa’s BPH with Dr. Steve Kaplan (Mt. Sinai, NYC) Wed, June 1 at 8.00 pm No registration required – just join live https://www.gotomeet.me/AnswerCancer We’ll be talking all issues around frequency, urgency, nocturia and more. Send your questions to joeg@ancan.org
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: Lotsa folks and topics – but save the best til last when a Care Partner gives her perspective(rd)
Topics Discussed
Denovo Mx G5+5 calls for triple line attack; handling a recent hi-risk Dx; PSA rise leads to consult with Dr. E; blood clots in bladder down to RT cystitis?; Mod’s lung nodules need Bx; starting IHT after 4 yrs; abi should not prevent Provenge; letting PSA rise for PSMA scan; do low dose steroids impact muscle strength?; darolutamide approved by Bayer; Ac225+Lu177 started; PSA eventually turns down post spot RT; post Brachy +IMRT maybe a PSMA?; enlarged gland post SBRT??; Care partner offers her perspective
Chat Log
Peter Kafka – Maui (to Organizer(s) Only): 5:23 PM: I spoke to Blue Earth a month ago or so and they did not offer Axumin on the Islands at that time. The Ga68 “kit” just came to Honolulu but it is not yet up to speed in terms of reading results according to my oncologist.
AnCan – rick (to Organizer(s) Only): 5:27 PM: Peter – that can’t be correct. There is software immediately available to read the Pylarify scan now.
Peter Kafka – Maui (to Organizer(s) Only): 5:29 PM: That is what my local oncologist told me last week when I met with him. Also my local Rad onc said it is only the Ga68 scan and that is very recent.
Ravi (to Everyone): 5:33 PM: how come no one is talking of radiation
Stephen Saft (to Everyone): 5:34 PM: Isn’t the most urgent thing for Bruce to do is to see a GU oncologist
Jeff Marchi, San Francisco (to Everyone): 5:35 PM: PROMISE is Open to All Prostate Cancer Patients Patients in any stage of treatment or survivorship are invited to join PROMISE.
AnCan – rick (to Everyone): 5:35 PM: Ravi – He’s denovo metastatic …… and he is being seen by a urologist. Radiation should follow ….
eric (to Everyone): 5:35 PM: It was alot of info for bruce make sure he can review this call
Jeff Marchi, San Francisco (to Everyone): 5:36 PM: that quote is from the promise site https://prostatecancerpromise.org for free dna test for prostate cancer to find dna problems
Henry (to Everyone): 5:43 PM: have to run; thanks everyone
AnCan – rick (to Herb Geller): 5:43 PM: mostly BRCA 2 actually Herb
Ori (Private): 6:03 PM: What is the name of the drug that you mentioned which is used to treat people with the BRCA gene
AnCan – rick (to Ori): 6:06 PM: the drug class is PARP-I; there are several drugs – olaparib, rucaparib, niraparib,talozaparib and more.
Stephen Saft (to Everyone): 6:08 PM: I have a friend who has several had UTI as well as 2 clots. I think he was diagnosed in 2018.
John Ivory (to Everyone): 6:12 PM: I had blood in my urine 1.5 – 2 years after 40 rounds of radiation, but it only lasted for a day or two. Cystoscopy showed nothing. Haven’t had it again. No pain in urination for me.
AnCan – rick (to Everyone): 6:14 PM: Must have happened to me at lest 5 or 6 times post RT – some at least 5 + yrs out. No pain
AnCan – rick (to Everyone): 6:17 PM: Wed June 1, 8.00 pm Eastern Dr. Steve Kaplan, AnCan Barniskis Room. We’ll be talking BPH, urgency, frequency. Bring your questions.
Joe Gallo (to Organizer(s) Only): 6:18 PM: It’s a drop-in First Wednesday meeting at 8 p.m. EST on Wednesday, June 1. Go here for directions to the Barniskis Room to attend the free program, featuring BPH guru, Dr. Steven Kaplan: https://ancan.org/groups/joining-instructions/ Mark it on your calendar.
John Antonucci – CT (to Everyone): 6:25 PM: 3 cm is correct
Peter Kafka – Maui (to Organizer(s) Only): 6:27 PM: My buddy Mark who was on our call 3 weeks ago or so had a lung mass show up on his CT scan. Biopsy showed “lung” cancer on top of his recently diagnosed GL-9 PCa. So he is riding the rails right now. Trying to push him off the Islands but he may stay here. Low spirits!
Ben Nathanson (to Everyone): 6:31 PM: Thanks, Frank and Alan — and Rick
Alan Moskowitz (to Everyone): 6:32 PM: Rick and others, did any of you have clots that caused a total urinary blockage, or was it just “minor’ bleeding?
AnCan – rick (to Everyone): 6:34 PM: Minor bleeeding for me
John Antonucci – CT (to Everyone): 6:35 PM: Alan, my brother had the same painful bloody blockage and clots. This was before his prostate CA diagnosis. Had 2 awful ER visits. No final explanatiion! No recurrence since–4 years. No history of radiation, though that might be the most likely for you.
Alan Moskowitz (to Everyone): 6:35 PM: Thanks John and Rick.
John Antonucci – CT (to Everyone): 6:39 PM: From my interaction checker—-prednisone decreases the effect of Provenge. not an absolute contraindication.
In the patient advocacy world, Non-Medical Switching has been a major topic this year.