Editor’s Pick: Staging your prostate cancer BEFORE treatment ….. and of course – exercise, exercise, exercise!!!
Topics Discussed
Stage your disease before starting recurrence treatment; ADA and ADT; staging your disese before starting any treatment!; PSMA scan vs color doppler; radiating pelvic girdle vs systemic treatment; abscopal effect from RT; persisiting with olaprib; doc says exercise is essential; MyVictory coming soon; PSMA scan in Taiwan; metformin for prostate cancer; foot and hand syndrome from chemo; how long does it take for testosterone to return after ADT?
Chat Log
Dell Jensen (to Everyone): 5:18 PM: I concur. I would wait on the radiation till you are fully healed and have good urinary control
Dell Jensen (to Everyone): 5:19 PM: ADT is necessary to control the cancer.
Peter Kafka (to Everyone): 5:19 PM: What kind of doctor is guiding this gentleman?
Mark Perloe (to Everyone): 5:20 PM: My UCLA med onc suggests that the studies on ADT are primarily with EBRT. There are limited studies on ADT with SBRT. I was told that six months may be sufficient.
Mark Perloe (to Everyone): 5:21 PM: I’d advise a PET Scan with DCFPYL or GA68 PSMA prior to doing a treatment plan.
Peter Kafka (to Everyone): 5:22 PM: Northern or Southern Indiana? How far from Chicago? Probably should do genetic testing and anything else that can be done safely in this Covid-19 climate. Should be under the care of a good GU med onc before embarking on ADT
Dell Jensen (to Everyone): 5:24 PM: Very good doctors at Northwestern
Mark Perloe (to Everyone): 5:40 PM: Is anyone attending PCRI online conference this Friday?
Dell Jensen (to Everyone): 5:47 PM: I wish I could but I have training this weekend
John I. (to Everyone): 6:38 PM: Thanks Mark P. I’ve been searching for a good set of exercises like that
AnCan- rick (to Everyone): 6:40 PM: ….. https://www.radpowerbikes.com/
Carl Forman (Private): 6:47 PM: you mentioned there is possibly someone who may be able to get me a discount for radpowerbikes?
Wang Gao Shan (to Everyone): 6:54 PM: Both UCLA & Taiwan asked if I am currently taking Metformin and if stop taking it before the PSMA scan. Should I wait to start taking the Metformin until I have had the GA68 PSMA scan?
Mark Perloe (to Everyone): 6:59 PM: With MRI’s or any injectable dye, you need to be off metformin for 3-4 days after. You can stop a day or so before or on the day of treatment. Please follow your docs advice. It’s best when you restart that you build up slowly again and not back to full level.
Peter Kafka: 7:01 PM: Got to sign off. My question came to me at 2 am this morning out of working with 2 guys stuck with Kaiser. The question is: Do second opinions within the Kaiser system work or is there too much “company” loyalty within the system?
Editor’s Pick: Tough one this week – a toss up between treatment options for men with recurrent disease …. and finally taking a drug holiday after 3+ years! rd
Topics Discussed
PCRI Virtual Conference 2020; chemo edema disappears overnight; Covid Test; alkaline phosphatase discussed; recurrence treatment options for two of our guys; after 3 years of success – drug holiday!; treating the primary for metastatic men; available PSMA screening trials; starting ADT
Chat Log
AnCan – Rick (to Everyone): 3:08 PM: 877 582 7011 + GtM Support
AnCan – Rick (to Everyone): 3:20 PM: To register for PCRI ….. https://pcri.us7.list-manage.com/track/click?u=e61bab2d681f6500ca8a92f0e&id=ccc38b0e20&e=27da33585f
AnCan – Rick (to Everyone): 3:39 PM: Dennis M’s trial – https://www.clinicaltrials.gov/ct2/show/NCT03437941
AnCan – Rick (to Everyone): 4:05 PM: NGS new rules ….. https://ancan.org/much-excellent-news-from-foundation-medicine/
Len Sierra (to Everyone): 4:14 PM: Trial at Carbone Center: PSMA-based 18F-DCFPyL PET/CT and PET/MRI Pilot Studies in Prostate Cancer Brief Summary: The overall goal of this research is to validate and develop a non-invasive imaging biomarker of prostate cancer detection, progression, and recurrence. Development of such a biomarker may be useful to differentiate indolent from aggressive prostate cancer phenotypes allowing for selection of an appropriate risk adaptive therapy. Principal Investigator: Steven Cho Sex(es): Male Age: 18 Years and over
Rich J (to Everyone): 4:17 PM: Imaging Study to Investigate Safety and Diagnostic Performance of rhPSMA 7.3 (18F) PET Ligand in Suspected Prostate Cancer Recurrence (SPOTLIGHT)
Jeremy (to Everyone): 4:58 PM: UCLA has increased their price to $3K /Users/jeremylew/Desktop/Screen Shot 2020-09-01 at 4.57.31 PM.png
Ken A (to Everyone): 4:59 PM: thanks Jeremy….
Ken A (to Everyone): 4:59 PM: looking at the trial UCLA has….
Jeremy (to Everyone): 4:59 PM: Tried to show the screenshot, but it didn’t post. BUt the price they gave me last week was $2977
AnCan has the distinct honor to partner with one of the pre-eminent MS couples in our Nation, Dan & Jennifer Digmann (A Couple Takes on MS). They co-moderate our Multiple Sclerosis videochat virtual support group along with 3 others peer moderators; and are now producing the 3rd webinar in AnCan’s The TALK Series that will focus on MS. Here is Jen’s post from their own Blog published last week. If you know anyone living with MS … or their families, please forward! (rd)
Dan and I have spent the past several months working with AnCan to organize and coordinate an incredibly important online event that will help families living with Multiple Sclerosis.
We are beyond thrilled to invite you to “The Talk – Multiple Sclerosis …. Speaking to Your Family About Your Disease.”
Here is what you need to know about this free webinar:
• It is scheduled for 8 p.m. EST Wednesday, September 30.
• Four families from throughout the United States will share their diverse stories and experiences of communicating about MS.
• Brenda Miller, an MS certified nurse and MS patient, will moderate the conversation.
• You must register to participate, so we encourage you to register today!
Check back here in the coming weeks for further details about “The Talk – Multiple Sclerosis …. Speaking to Your Family About Your Disease.” And remember to take the time to register to participate.
Many of you already know, AnCan works closely with Foundation Medicine Inc who offer Next Generation Sequencing (NGS) somatic liquid and solid tumor testing.
Here are THREE great pieces of news shared with us over the past few days:
The ‘new & improved’ Liquid CDx Test was FDA approved late last week, meaning this test now covers the same 300+ mutation panel as the solid tumor test – but at the prick of a needle! . Read their full press release here.
Medicare considers the Liquid test to be separate and independent from the Solid Tumor test meaning both are covered for the same individual at different times.
AND that’s not all ….. finally we have a decision back from FMI that repeat testing for either Liquid or Solid is Medicare covered IF there is disease progression. In FMI’s words (that we are approved to disseminate):
AnCan’s always advocating for you ……. and thanks to the FMI team for pursuing this, especially Senior Manager for Patient Engagement, our good friend David Marshak!
CancerCare welcomes you to participate in our upcoming CancerCare Connect® Education Workshops. These one-hour telephone and webcast workshops are a cost-free way to learn about cancer-related issues from the convenience of your home or office. Leading experts in oncology provide the most up-to-date information via phone and online.
Please feel free to forward to friends, family, partners, caregivers, colleagues, health care professionals and anyone affected by cancer.
For more information and to register, please visit www.cancercare.org/connect or email connect@cancercare.org. Health care professionals: please contact us with your name, address, and license type for additional information regarding continuing education credits. Requests must be received within two weeks of the live program.
Editor’s Pick: Other than our discussion about therapeutic benefits of using a chain saw … the diverse effect of enzalutamide on different men is evident this week. And wait to the end to hear how important it is to “Be Your Own Best Advocate!”
Topics Discussed
Recurrence complicated by urethral strictures; are PSA readings during chemo impacted by the cell cycle?; hemoglobin anxiety & MCHC; PSA trends down afer spot radiation; use the same lab for all tests!; AS vs surgery … for a kidney cyst!; access Medicare if you are on SSDI; Xtandi hurts QoL for some men … but not others; doctor wants to treat suspicious lesion in newly Dx man – without checking first if metastatic!
Chat Log AnCan
Rick (to Everyone): 3:27 PM: Does early salvage radiaiton save lives? https://prostatecancerinfolink.net/2015/01/26/does-early-salvage-radiation-save-lives/
Peter Kafka (to Everyone): 3:51 PM: DR. Feng at UCSF is the top Rad Onc; he came from Michigan and does considerable research
Peter Kafka (to Everyone): 4:59 PM: Indiana Univ has some Ga68 trails.
AnCan – Rick (to Everyone): 4:59 PM: Next Month ….. 1st and 3rd Tuesday …. NOT 2nd & 4th
AnCan – Rick (to Everyone): 5:00 PM: clinicaltrials.gov
Shamsul Chowdhury (to Everyone): 5:02 PM: Anyone there has any experience of Proton beam therapy! Thanks
Jake Hannam (to Everyone): 5:04 PM: Make the Most From the Internet https://www.youtube.com/watch?v=UdSW86R8LsE&list=PLDlL6phvnOTyCynAKkOUKPMhFKaKFx
Peter Kafka’s musing this week are born in Maui amd quicky emanate to encompass medical and natural challenges all the way to the mainland. (rd)
Sometimes I feel like I have my hand on a “Mouse” and I am continually zooming in and out, changing perspective on my own issues and those of much larger pictures. I could easily focus in on my own challenges and the fact that our local hospital appears to be in the midst of a second serious Covid-19 outbreak effecting some two dozen patients and an equal number of staff this time around. Normally I would not care too much, but since this is our only community hospital and I need to access it on a regular basis for my own treatment protocol it puts me in an awkward position.
But when I zoom out a bit, I can easily be more concerned about the city and count of Honolulu on Oahu where one of the most rapid and significant increases in Covid-19 infection rates in the US is occurring at present. But then I expand my vision a bit and cross the Pacific and note that the many residents of the Western states, and most particularly California are in the midst of a second serious thereat to life and livelihood, the extreme heat and wildfire season.
Normally I could say that these fires are too far away from me to matter. But a very good friend of mine who I met 4-years ago at UCSF while doing radiation for our respective prostate cancers, lives smack dab in the middle of what is now one of the largest fires in California history. When I spoke to, he and his wife earlier in the week they had reported that their house was standing at that time, but that the fire was igniting some other structures on their property. I don’t have an update, but when I search Google Maps, I can follow their road up the mountain and see that they are indeed surrounded by fire.
I zoom out a bit further and see that we are in the midst of hurricane season, that our country has yet to adequately manage this pandemic and we lead the world in terms of disease and deaths. Then further afield there are many parts of the world suffering from financial ruin and food shortages on top of everything. And then the ultimate click of the mouse greeted me this morning to warn of a 0.5 percent chance of our Earth being hit by an asteroid on the day before election day in November!
All this kind of helps me see that my little struggle with Prostate Cancer is not the center of the universe. I think it is helpful to zoom out to the bigger picture from time to time and keep perspective. One of the reasons I stay so engaged with our AnCan virtual online support meetings is to remember that others have significant issues and concerns that need attention and that I am big enough to step outside and beyond my little world and help another.
8/19/20 John Fortin presentation to the AnCan Active Surveillance Support Group
John Fortin, Patient Liaison for the American Urology Association, spoke August 19 to the AnCan Active Surveillance Support Group about his personal experience as a patient seeking help with a rising PSA score.
As a healthcare actuary with a 40+ year career in healthcare data analytics, John discussed options with various specialists and did an extensive review of studies to consider treatment plans: Active Surveillance, whole-gland treatments, and focal treatment. Since there was a lack of credible, published focal studies, John even conducted and published his own online survey of 100 patients who had undergone focal treatment to analyze oncologic outcomes, functional outcomes, and patient satisfaction level.
He concluded that focal therapy was the way to go for him. He has fared well and reports no side effects. John discussed the myths and realities of Medicare coverage of the treatment. It takes work, but he said patients can obtain coverage. Medicare reimbursed him $16,000 for the treatment.
John is a new member of the board of Us TOO International.
One of the video chat, virtual groups our factotum Board Chair, Peter Kafka, moderates, is a men-only, pan-cancer meeting on the island of Maui (& Malakai), where he lives fulltime. His recent reminder for tonight’s meeting makes worrisome reading and includes helpful advice ……
Aloha! ……. once again our local hospital is in the news due to very recent incidents of Covid-19 infections among some patients and staff. I don’t mention this to cause alarm, but rather to caution those of us who must out of necessity use the facilities of the hospital for treatment. I found myself at the hospital for the administration of an injection on the very morning when this “outbreak” was first reported last week. Of course it made me a little uncomfortable, but what to do? Those of us with cancer, and particularly those of us undergoing treatment find ourselves in the “most vulnerable” category when it comes to exposure to Covid-19. I suspect that many of you are paying particular attention to ways that you can stay safe. It turns out that there might be some things we can do.
When I was undergoing chemo infusions every three weeks at the Cancer Center I would don a disposable tyvek painter’s suit that I picked up inexpensively at the hardware store. I would step into this suit in the hospital parking lot and when I was done with my 4 hour protocol I would remove the suit and toss it. This would save me the hassle of thinking I needed to change out of my clothes right away and wash them. Of course it might not have done any good, but it did give me peace of mind that I was taking some kind of additional protection other than wearing a mask and disposable gloves.
Another thing that I read about recently is the benefit of an annual flu vaccine. I think there has been a study or two about the lower incidence of more serious incidence, side effects and death among some European populations who stayed up to date with their annual flu vaccines. I know that Covid-19 is a different beast than the annual flu, but there might be some benefit to keeping up protection to the flu that strengthens our immune system in regards to Covid-19. Don’t quote me on this theory, but since my cancer diagnosis some 6 + years ago I have made it a point to keep up with annual flu shots and pneumonia vaccines since I knew my immune system was compromised. You may have noticed that all the drug stores and supermarkets are now advertising that the “walk in” flu shots are available for this year. No need to see a doctor or clinic.
One of the ways that we tend to let our guard down is by thinking that there is no one that we know of that has caught Covid-19, been sick or in the worst case scenario has died from this disease. I know I have caught myself getting a little careless because of this way of thinking. But I remind myself that one of our regular participants on these bi-monthly calls got caught up in the first Maui Memorial Hospital outbreak last March when he unwittingly had to go to the hospital for treatment related to his cancer diagnosis. He did contract the virus and subsequently died very shortly afterwards.
So, again I am not telling you this to cause alarm. Just take some extra precautions. I am certainly not saying you should stay away from doctors or the hospital. I, myself have to utilize the hospital facilities several times a month and also get blood drawn at a local lab quite frequently. I am not going to skip out on my cancer treatment protocol. But I am going to take whatever steps I can to protect myself.
None of us need feel like we are alone on this journey! Remember that Information is Power and the more information we share about our experience – the more powerful we are and we no longer feel like victims of our circumstance but masters of them instead.
Editor’s Pick: Even amongst the best GU med oncs, some work with you and some do not. Hear how one makes it tough to access darolutamide (Nubeqa) while another does not.
Topic Discussed
Handling transition after intial treatment on RT + ADT; recurrence after RP 7 yrs ago; locating a PSMA scan; partial ADT holiday; using lighter exercise to fight fatigue; enzalutamide crippling – access darolutamide; staus of NHI PSMA trial; don’t fall for questionable trials; what next after PARP?; incontinence no more; SBRT salvage radiation; hernia experiences
Chat Log
Ron Bucher (to Everyone): 5:18 PM: I attended advanced groups before I became an advanced patient, and I’m glad I did.
Herbert Geller (to Everyone): 5:56 PM: https://www.uclahealth.org/urology/iuo/an-experimental-imaging-scan
Herbert Geller (to Everyone): 5:59 PM: Nat Rev Urol . 2016 Apr;13(4):226-35. doi: 10.1038/nrurol.2016.26. Epub 2016 Feb 23. Current use of PSMA-PET in prostate cancer management Tobias Maurer 1, Matthias Eiber 2, Markus Schwaiger 2, Jürgen E Gschwend 1 Affiliations expand PMID: 26902337 DOI: 10.1038/nrurol.2016.26
Len Sierra (to Everyone): 6:00 PM: PSMA as therapy: https://www.prostatecancer.news/
Jeremy (to Everyone): 6:16 PM: Master Ming Tong Gu https://www.youtube.com/watch?v=Oj0ewBvr6zM&list=PLnQPg9ef3v52NHuQ1WIO8yjN-2yqpqIcs&index=13&t=4s
Len Sierra (to Everyone): 6:18 PM: You have to go to: smile.amazon.com
Russell Smith (to Everyone): 6:24 PM: Just signed up on Smile.amazon.com
