Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 28, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Advocating for what you want may not be advocating for what’s best for you. (bn)
Topics Discussed
PSA in the 60s, but Gleason 3+4 — time for a PSMA scan; SUV maxes of FDG PET and PSMA PET are unrelated and can’t be compared; don’t underestimate the chills and aches when starting zoledronic acid; Keytruda surpasses his expectations — a Christmas miracle? — but another man fails to respond; surprisingly good response after switching from daro to abi; docs agree to drop ADT — but advocating for what you want may not be advocating for what’s best for you; ADT is an easier ride when you’re knowledgeable and prepared; reminder: no cold turkey with prednisone; could monotherapy be a safer choice than ditching hard-to-tolerate ADT?; doc balks at genetic testing that could uncover therapy options
Chat Log
Richard Wassersug (Vancouver) · 6:09 PM
Myovant is now Sumitomo Pharma
AnCan – rick · 6:14 PM
Gleason Grade, right group????
Julian – Houston · 6:14 PM
I did read that Myovant got bought out!
Peter Kafka – Maui · 6:14 PM
He probably should be in the Low and Intermediate group.
Steven Friedman · 6:31 PM
stevenfriedman55@yahoo.com
AnCan – rick · 6:36 PM
peterk@ancan.org
Peter Kafka – Maui · 6:37 PM
peterk@ancan.org
Peter Kafka – Maui · 6:44 PM
Sounds similar to Len’s experience recently.
Len Sierra · 6:44 PM
Almost identical to me.
Unknown · 6:44 PM
My wife Ellen had the same response she like you and Len
J. Ward · 6:59 PM
I made it an hour, gents, and wanted everyone to know about the Reclast side effects. I’m going to take Dr. John’s advice and hop off the call to get rest. Good night!
Len Sierra · 7:15 PM
From RADICALS-HD trial: After a median follow-up of 9 years, the study investigators found that 24 months of ADT were superior to 6 months (HR 0.77, 95% CI [0.61, 0.97]; 72% vs 78% at 10 years) with respect to the primary endpoint of metastasis-free survival (MFS).
Unknown · 7:20 PM
Why not try mono therapy first with Dara?
Larry Fish · 7:26 PM
please spell this drug-suppliment
AnCan – rick · 7:26 PM
fenbendazole
Jim Marshall, Melbourne, FL on Vac · 7:26 PM
I managed my ADT + Abi for 5 years and it did not slow me down. Being diagnosed at 73 and now 79 has slowed me down more. Aerobic Exercise has been the key even when my body said it was exhausted, will power got me on the bike which promoted recovery. jim
AnCan – rick · 7:48 PM
Elizabeth Heath Karmanos
AnCan – rick · 7:48 PM
https://www.karmanos.org/karmanos/karmanos-physician-directory/heath-elisabeth-8225
Frank Fabish Columbus OH · 8:00 PM
See you guys. good session.
Steve Roux, MI · 8:07 PM
Guys, really need some dinner; see you next meeting. Great session and thanks to all of you!
Len Sierra · 8:07 PM
BXCL701 showed good results when used with Keytruda in both enzalutamide resistatnt mCRPC and with small cell neuroendocrine cancer.
Len Sierra · 8:09 PM
Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, they are synaptophysin positive
AnCan takes a holistic approach to your physical and mental health. AnCan also recognizes that a healthy mouth contributes to a stress free life… and all too often your condition, or the meds you take for it, can disrupt dental health. Some of our groups speak frequently about dry mouth (xerostomia), loss of taste (ageusia) and ONJ … osteonecrosis of the jaw.
When, Dr. Bob Gurmankin DMD, a recently retired dentist living with advanced prostate cancer, noticed the frequency with which these dental topics came up in his group, he suggested a two-step support program – 1) a handout on our website, and 2) a dental health webinar in 2024… watch out for this int he New Year.
One handout alone was not going serve all needs so Dr. Bob graciously prepared THREE to kick start our effort to help you maintain a healthy mouth.
Please download whatever is appropriate and spread the word to others who you think may benefit. Dr. Bob Gurmankin can be reached at dr.bob@ancan.org ; if you have questions he has kindly agreed to assist… THANK YOU DR. BOB!!!
Please participate in our Groups where you’ll find more support… onward & upwards.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 20, 2023
HAPPY THANKSGIVING TO ALL OUR VIEWERS… may it be peaceful and full of gratitude.
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Persevere to the very end to hear us question docs who recommend Pluvicto knowing some mets won’t respond (rd)
Topics Discussed
Different MRI presentations can confuse; balance and falling; do dormant prostate cells express PSMA?; Pluvicto offers no quick result – Ac225 next??; don’t rush the prednisone taper; does your assigned doc have the right qualifications?; urinary issues lead to kidney failure – and a neck brace!; Orgovyx causes fewer hot flashes for some men; with mCRPC, don’t anguish over 0.1-0.3 PSA fluctuations; do historic doubling patterns hold when PCa recurs?; PCa recurs only IN the radiated gland – what next after 6 mo. HT?; ultra sensitive test redundant post-RT; does Pluvicto make sense for man with hybrid PCa?
Chat Log
Michael Wyn, Denversent · 6:15 PM
Thanks everyone. Good bye
Phil Dipaolasent · 6:19 PM
Hi, I would like a few minutes during the session today, if possible! Thanks, Phil Dipaola
sent · 6:21 PM
Phil – you have to be here in the first 10 minutes to be sure of time. PLEASE REFER TO OUR REMINDER. That’s the protocol with so many attendees.. If we have time at the end, we’ll certainly get to you.
sent · 6:22 PM
Were you tested for neuropathy?
Bill Franklinsent · 6:31 PM
Joel, if at all possible, don’t hesitate to ask for a physical therapy referral from your PCM. All the stuff Larry talked about would be worked on.
Bill Franklinsent · 6:37 PM
What age is considered elderly now? This is a serious question. Sometimes all doctors think about is the number on the age line. But many of us are in great shape.
TonyFigsent · 6:39 PM
I thought the Surf sound in Florida got louder in the winter. Maybe it is elderly shuffling their feet.
AnCan – ricksent · 6:52 PM
Google …… Alpha emitter vs Beta emitter PSMA radionuclide therapeutics
I will. turn 75 tomorrow, and I do not consider myself elderly!
My wife was a geriatric nurse. She had no time for doctors who blamed problems on an individual’s age.
AnCan – ricksent · 7:10 PM
Happy B-day to Alan Babcock!!!
JEFFERSONsent · 7:11 PM
thank you so much
Julian – Houstonsent · 7:14 PM
Happy B-day Alan!!!
Jimmy Greenfieldsent · 7:20 PM
Biological age , not the number. In my parent’s time 70 was elderly. People stopped moving. I know otherwise ‘healthy”50 year olds who are truly old, physically and/or behaviorally. Unfit, set in their ways etc. Then you have birthday boy Alan Babcock- 75 years young if ever I saw it.
sent · 7:21 PM
Hi I have a question about PSA test sensitivity. For the first time in about 6 months my level went below the ‘undetectable’ level as my local Kaiser defines it, <.06. Very grateful for that. Going forward, I’m wondering if I should be pushing Kaiser for a test with greater sensitivity? When people talk about their PSA testing I usually hear specificity below .06, but I’m not sure if there would be value for me in that ‘extra’ sensitivity. I am 3.5 years past initial radiation treatments not taking any medications at this point.
Alan Babcocksent · 7:22 PM
Thanks Jimmy
Jim Marshall, Jupiter, FL on Vacsent · 7:26 PM
You say not under treatment but have you been not being treatec for 3.5 yrs or on a treatment holiday. I’d press for PSA tests every 4 months. I am Kaiser too. but on treatment holiday gettng PSA test every month.
sent · 7:34 PM
Thank you Jim Marshall for the question; after radiation I did 2 years of Zytiga/prednisone, and haven’t yet had the need to restart.
Jim Marshall, Jupiter, FL on Vacsent · 7:36 PM
uugst PSA test ever 1-2 months because you are on holiday. In fact I get all the blood tests I got when under treatment. Kaiser has no problem with in in the DC area.
Jim Marshall, Jupiter, FL on Vacsent · 7:38 PM
although if the thought is you are in remission, then 3 months for a year and then either every 4 or 6 months going forward not needing all the other tests. Jim M
sent · 7:41 PM
Thank you Jim M!
Alan Msent · 7:46 PM
Matt, I have had the ultrasensitive PSA test done by Labcorp for 10 years. I prefer to see small changes and get an early warning of pending increases or decreased in PSA. I recommend it as long as it won’t give you anxiety.
Julian – Houstonsent · 7:47 PM
I am also doing the ultrasensitive PSA test every 3 months!
Alan Msent · 7:52 PM
Need to sign off guys. Good night.
Jim Marshall, Jupiter, FL on Vacsent · 8:03 PM
Kaiser has always given me PSA tests with 2 decimal places from the start 6.25 years ago. It has been less than 0.01 ever since I was on ABI + Lupron and into 15 months holiday.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 14, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Full of urine and free of care (bn).
Topics Discussed
Remedies for full-bladder anxiety before radiation: Gemtesa, the Lunderg clamp, the Wiesner clamp, and the perfect glass of water; men who know less about their cancer than they should; does starting Provenge mean dropping abi?; what is Provenge?; docs OK ADT holiday after 7 months — we have our doubts; controversial off-label fenbendazole; painfully swollen leg 5 months after chemo — lymphedema or something else?; happy camper with rebounded testosterone and PSA low 9 months after radiation; struggling with rectal pain from a massive prostate tumor — a case for palliative care; he’s impatient for testosterone recovery; a doc predicts end of the road for Lupron as monotherapy becomes standard of care.
Chat Log
AnCan – rick · 6:10 PM
King Charles birthday too!
AnCan – rick · 6:17 PM
Alan B …. bet you wish you had known about that!!
AnCan – rick · 6:18 PM
Gemtesa – virbegron
AnCan – rick · 6:29 PM
Lundberg clamp; via Amazon
· 6:36 PM
Wiesner clamp also Amazon
AnCan – rick · 6:38 PM
Here’s teh study Vic referenced https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10320463/
AnCan – rick · 6:41 PM
Provenge / Sipileucel-T
todd rieke · 7:01 PM
Fenbendazole
AnCan – rick · 7:13 PM
Please run the use of any complementary or alternative medicine with your HCP!!
todd rieke · 7:13 PM
fenbenlab.com
J. Ward · 7:20 PM
Thanks. Wishing you success with Fenben and also with your consults at MDA and Guancale. I see Dr. Corn at MDA.
Jim Marshall, Melbourne, FL · 7:42 PM
I was on ADT for 5 years and it took 9 months for the testosterone to begin.
Julian – Houston · 7:47 PM
I got off all my medications 1 year ago and testosterone is at 125 last month.
Jim Marshall, Melbourne, FL · 7:49 PM
After 15 months the testosterone has trended down from 144 for the last 3 months. Interesting.
Julian – Houston · 7:50 PM
About the same, testosterone went up to 155 and came back down to 125.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 6, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Several Gents face new lesions, and a couple of GU med oncs overlook the obvious! (rd)
Topics Discussed
Oligometastatic treatment strategies; could this be a recurrence?; single new bone lesion; PSMA shows metastatic lymph node; can prednisone suppress testosterone?; dehydration/low potassium causes brief blackout; full bladder strategies during RT; can you do Provenge while on androgen blockers; GU med onc overlooks PSMA scan; Next Generation Sequencing needed post Pluvicto; AUS coating could be the problem; chemo only works 25% of time
Chat Log
Peter Kafka – Mauisent · 6:33 PM
For some guys it is a question of whether the mets are causing pain or discomfort in deciiding to radiate
This could be scary…It’s almost open enrollment season for Medicare!
A dreaded time to receive multiple communications in untold ways that often read like a foreign language. It’s only fitting that we talked about it the day before Halloween.
Join AnCan as we bring experts Amanda Goodstadt, Esq. from Triage Cancer, and Medicare Insurance Broker Kim Umphres to explain all things confusing around 2024 Medicare insurance options, and make this enrollment season a little less spooky and intimidating.
Our panel will explain the whole menu from alphabet soup plans to doughnut holes! Learn the difference between Traditional and Advantage plans and if you can switch between them, what HMOs and PPOs mean, how to sign up to see any doctor anywhere and much more.
Click here for a special handout from Triage Cancer with Medicare resources.
Special thanks to Bayer, Pfizer, Myovant Sciences, Foundation Medicine, Myriad Genetics, Janssen – Johnson & Johnson, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 24, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
UPCOMING WEBINAR – Let’s talk Medicare 2024!Monday, Oct 30 8.00 pm Eastern Register at http://tinyurl.com/ancanmedicare . We plan NOT to make this scary!!!
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Facing the future as a three-year drug holiday falters. (bn)
Topics Discussed
Smooth recovery for kidney transplant patient who chose surgery over radiation; beginning of the end for a three-year drug holiday; turning to Pluvicto after chemo failure — which treatment is worse?; what it’s like undergoing Pluvicto therapy yet again; off ADT for 18 months, but now unexplained fatigue as PSA rises; controversy over Jonathan Epstein; prophylaxis for ADT bone loss; when triplet therapy makes sense; putting out the welcome mat for questions.
Chat Log
Peter Kafka – Maui · 7:20 PM
How much radiation from Pluvicto can a person safely have if multiple cycles are involved?
Al L · 7:26 PM
i didn’tmention it but I talk to Dr Scholz next week as well. He has patients that have had more Pluvicto sessions than I have had. I will be asking him about tolerating multiple rounds.
Peter Kafka – Maui · 7:33 PM
Has Marc had previous PSMA scans? Have they shown up stuff? Just wondering with low PSA profile.
Rick Davis · 7:45 PM
The Active Surveillor
Gary P · 7:52 PM
Here is the WP article:
Gary P · 7:54 PM
https://www.washingtonpost.com/health/2023/10/22/johns-hopkins-jonathan-epstein-pathology/
So, you have MS. You may also be a Veteran of the United States military. What kinds of benefits and resources are available to those who have served and are now living with this debilitating disease? Here we hope you’ll find our beginner’s guide helpful in your search for benefits and resources.
Having MS and navigating the world of healthcare is dangerously daunting all on its own. Throw in some confusion about VA benefits, and you have a confusion cocktail to contend with (see what I did there?).
Before we dive in, just be warned: there is a plethora of information. Take your time researching, because there are a lot of links in this blog post. Because there’s so much info to take into consideration, we will do our best to update this blog as necessary. Check back regularly for more information as we come across it.
Over this past weekend, Jim struck up a conversation with an Air Force Veteran who has MS. He was surprised to learn that MS is, in fact, not covered under the Agent Orange Act or the PACT Act. MS has not been identified as an illness associated with the substances that these Acts target.
In his conversation, and subsequent research later on, he found that many people (perhaps as high as 60% of people) were denied upgrades to their disability rating. The VA, depending on evidence, will often award up to 30%. However, sometimes specific symptoms will allow for a higher percentage; one of those being chronic fatigue, which gets a 60% rating all on its own.
Jim also states that Veterans who are prevented from working as a result of their MS may be able to receive a benefit called “Total Disability on Individual Unemployment Ability”, or TDIU. This benefit compensates Veterans at the 100 percent rating, even if their overall disability rating may be less than that. Veteran’s symptoms must be Service-Connected (SC), and already have a 60% disability rating OR have “2 or more service-connected disabilities—with at least 1 rated at 40% or more disabling and a combined rating of 70% or more”. You also must not be able to hold down a steady job that would have supported you financially. Definitely click on he link above to read more about it and see if you qualify.
The website states: “The VA provides health care services to Veterans with MS from the time of diagnosis throughout their life, whether or not they have a service-connected or non-service connected status. If an individual had symptoms of MS in the military, or within seven years after honorable discharge, he/she may be eligible for service-connected disability.”
For those who are new to the benefits game:
The website suggests filling out the VA Compensation and/or the VA Pension form available online or at his/her local medical center for starters.
But oh my goodness, that’s a lot to sift through. Here are a few things on that web page that stand out to us:
Info on Filing and Intent to File – Sounds a little silly, but you may be able to receive retroactive payments for the time between when you submitted your intent to file and when they approve your claim.
Specially Adapted Housing Grant (SAH) for those who own their home, or will own their home, this is a grant that allows adaptive modifications to your home. Can receive up to $109,986 as of 2023
Special Home Adaptation Grant (SHA) is the same as the above, but with different qualifications. Can receive up to $22,036 as of 2023
Temporary Residence Adaptation for those who are living in a temporary family member’s home that needs changes in order to meet your adaptive needs. You must meet all the qualifying criteria for one of the two grants above. The amount changes depending on which one you qualify for.
Many people with a chronic or debilitating illnesses will tell you that advocating for yourself and your needs is of utmost importance. When dealing with and anything VA-related, persistence is key.
It’s tricky, and it’s a lot to deal with on top of managing symptoms.
Keep in touch with your primary care provider and your MS social worker. They’ll be able to help you refine your case for increasing your disability rating. They’re an invaluable source of information and help in signing up for various benefits. The provide supportive counseling to assist Veterans on the physical and emotional impact that MS can have on you and you family. They’re there to be your advocate, your negotiator, your case manager, and more.
If you don’t have a social worker on your team, look for the Social Work department at your local VA, or talk to your primary care provider or MS Specialist.
Here’s a summarized list of just some benefits offered at the VA. These programs require the help of a social worker:
Veteran Directed Care – offers monetary help with personal care services and daily living. Veterans are given a budget, and can even hire their own workers.
Medical Foster Home – This is a residency that’s similar to a nursing home, except Veterans are housed in a private home. Caregiving staff is on call 24/7. The VA ensures that these staff are well trained.
Captain James “Jim” Marshall wants you all to know that if you have any questions pertaining to benefits and navigating the system, feel free to send him an email:
Marshall-James@comcast.net
As we mentioned above, this article is just a small portion of info about benefits in the VA system. We will continue to update or even create new blogs as we see fit.
Above all we sincerely thank each of our Veterans for their service. We love and appreciate you!
Don’t forget to check out our MS Peer Support Group, which meets every 2nd and 4th Tuesday of the month
UPDATE #1 – Jim let me know that Amyotrophic Lateral Sclerosis (ALS) “is a presumptive condition for veterans with 90 days or more of continuously active service in the military. Any veteran with ALS should apply for Disability Compensation.”.
He goes on the state “Looking into justifying MS [and ALS] as Service-Connected, it is not as difficult as it seems. If the Vet was exposed to Hazardous Materials, most of us come across such things even in the states, then present VA thinking has MS service-connected because ‘IT IS AS LIKELY AS NOT’ caused by the exposure.”
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 16, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
UPCOMING WEBINAR – Let’s talk Medicare 2024!Monday, Oct 30 8.00 pm Eastern Register at http://tinyurl.com/ancanmedicare . We plan NOT to make this scary!!!
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Common themes this week… mono-darolutamide and drug holidays (rd)
Topics Discussed
Newbie faces recurrence post-RRP; younger newbie has delayed debulking with advancing situation; spot RT for the General; two opposing situations with mono-daro… a holiday for one and no T for the other; Embr Wave adn estrogen patches; clean scans has doc suggesting a drug holiday; is spot RT alone just whack-a-mole?; abi stops working so what’s next; Zometa gives severe flu like symptoms; Len gets positive scans and turns to spot RT and mono-daro; Paxlovid
Chat Log
sent · 5:55 PM
Stacy Loeb
Alan Babcocksent · 6:02 PM
I will be leaving periodically to check on my wife who is having eye surgery tomorrow.
Carlos Huertasent · 6:09 PM
cognitive what ?
Alan Babcocksent · 6:11 PM
Cognitive Behavioral Therapy for Daily Life – Great Courses
Jeff G.sent · 6:33 PM
Since I started to eat tofu, I no longer get hot flashes and sweats. Would not be a good plan for pts with gynecomastia.
sent · 6:51 PM
No
Gary Psent · 6:56 PM
darolutamide or nubeqa
Jim Marshall, Alexandria, VAsent · 7:21 PM
Len has the COOL (aka NO SWEAT) gene
AnCan – ricksent · 7:22 PM
97.3 …. Len is cool!!
David Muslinsent · 7:23 PM
i listen to 97.3
David Muslinsent · 7:26 PM
got to go guys. Great meeting as always. Thanks for moderating Len
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 10, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
UPCOMING WEBINAR – Let’s talk Medicare 2024!Monday, Oct 30 8.00 pm Eastern Register at http://tinyurl.com/ancanmedicare . We plan NOT to make this scary!!!
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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:Does it make sense to keep your cancer off guard?… & the Group talks A-fib! (rd)
Topics Discussed
AnCan loses two long term men on same day; Zometa side effects; 3+3 (??) newbie addresses mets after 20 years; Gent running out of options needs current sequencing … and new doc; does it make sense to keep the cancer off guard?; addressing A-fib; reducing visceral fat with exercise addresses sarcopenia; darolutamide refused so Gent starts with Orgovyx alone; Payer wrongly refusing NGS somatic testing; blood in urine could be RT cystitis – cystoscopy required; PCa recurs only within the gland.
Chat Log
Matt Kriegersent · 3:32 PM
Here are my recent PSA trends, it’s been a bit of a rollercoaster and I would appreciate any feedback. My treatment history is external radiation and HDR brachytherapy completed April 2020, and I was on 2 anti-androgens until June 2022. So 9 (Sept.)/2022 <.06, 1/2023 .06, 3/2023 .06, 6/2023 .35, 7/2023 .17, 8/23 .24, 9/2023 .07 I’m seeing my urologist tomorrow because a few weeks ago, for the only time other than the one biopsy and brachy, I had some blood in my urine – that was surprising but hasn’t happened again since.
sent · 3:35 PM
Too many things to do. You need to talk with the group. You need to make changes now.
Jim Marshall, Alexandria, VAsent · 3:44 PM
Genitourinary Medical Oncologist
John Asent · 3:48 PM
“LHRH antagonist drugs include relugolix (Orgovyx) and degarelix (Firmagon). These will suppress testosterone rapidly and don’t need the premedication with another drug.
Jim Marshall, Alexandria, VAsent · 3:50 PM
Abiraterone for Castration-Sensitive guys is 5MG of Prednisone
John Asent · 3:50 PM
Then, a second dug may be added to add to the testosterone suppression: abiraterone or darolutamide or enzalutamide.
marc valenssent · 3:56 PM
genitourinary MedOnc at Fred Hutchinson in Seattle: Petros Grivas
J. Wardsent · 4:00 PM
I need to hop off now; thanks for allowing me speak about Ken Anderson.
AnCan takes a holistic approach to your physical and mental health. AnCan also recognizes that a healthy mouth contributes to a stress free life… and all too often your condition, or the meds you take for it, can disrupt dental health. Some of our groups speak frequently about dry mouth (xerostomia), loss of taste (ageusia) and ONJ … osteonecrosis of the jaw.
