Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 11, 2025
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostic.
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
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: A long discussion on dealing with ADT-induced edema. (bn)
Topics Discussed
Swollen ankles and face, “incredible pain in my hips,” spiking blood pressure — these are common with ADT, and the medoc should be taking charge; a fruitful exchange follows about blood pressure, bone strengtheners, and edema; radonc we like surprises us by treating 7 tumors with spot radiation; osteoarthritis doesn’t seem a likely cause for a positive PSMA; Tennessean likes Dr. Antonarakis, who’s great — but Dr. E’s closer; what are the right questions to ask his radoc before starting treatment?; you can’t know how much ADT will affect you — but exercise definitely helps.
Chat Log
Steve Roux, North Michigan · 6:26 PM
abiraterone and prednisone can both raise blood pressure.
AnCan – rick · 6:31 PM
Boniva or Reclast are the injectable bisphosphonates
Gary V Portland, Oregon · 6:35 PM
Would recommend Sectral as Beta blocker much more effective at controlling heart rhythm issues.
Jim Marshall, Alexandria, VA · 6:37 PM
For my heart Bypass follow on and the Edema in the legs there are Compression Socks.
Wes – San Diego · 6:43 PM
Yes, elevation above the heart, which can be hard to do even at night, or hard on the hips. But compression socks or anklets are both helpful.
Wes – San Diego · 6:45 PM
Good compression socks are expensive, $30 each. But well worth it. Huge door I did not know after 10+ years of eroding my foot bones and pain via gout, with near constant edema, especially in my lower left leg.
Jim Marshall, Alexandria, VA · 6:45 PM
Compression socks from the VA come from “Ames Walker” retailing for around $34. Be sure to get the meausrement right. They work well. Jim
Dr Jeff · 6:46 PM
$30 for a good pair is on target. Have your family and friends buy them for you for your birthday. Well worth the $
Dr Jeff · 6:48 PM
You probably need 20-30 mm Hg
Jerry Grimes, Brighton, MI · 6:53 PM
Search Dr. Richard Wassersug online for information about estradiol therapy for recurrent/advanced prostate cancer.
He has spoken here before:
AnCan – rick · 7:08 PM
Estradiol Session recording with Richard Wassersug https://ancan.org/talking-estradiol-e2-for-recurrent-and-advanced-prostate-cancer/
david opp · 7:25 PM
I was attacked by a cow and had bruised and 1 cracked ribs, 2 weeks later a PSMA scan lit up those bruised ribs but the radiologist did not give a suv number saying this should be confirmed by patient information.
Michael – TN · 7:41 PM
I had trouble getting in touch with Dr E and noticed there was a typo in the email address provided in the emails and other groups.
Here is the right contact gdeliguori@imppllc.com
Craig Christensen · 7:51 PM
Recommended rad oncs at Irvine City of Hope for MR guided RT?
AnCan – rick · 7:52 PM
Percy Lee GU RO https://www.cityofhope.org/percy-lee
AnCan – rick · 7:53 PM
Kishan UCLA RO https://www.uclahealth.org/providers/amar-kishan
TonyFig · 8:02 PM
Dr. Sholtz thoughts on radiation versus surgery https://www.youtube.com/watch?v=aGEVAWx2oNs
Craig Christensen · 8:04 PM
Decipher range is 0 to 10
Len Sierra · 8:04 PM
Just be aware that Scholz has a strong bias against surgery.
Wes – San Diego · 8:12 PM
Note should take K2 with D3; I take 5K-10K/day and finally got back to normal range, took years; and I live in SD and see the sun routinely.
St. Pete High School’s Senior Service Project Supports AnCan
This past December, the seniors from St. Petersburg High School’s International Baccalaureate program came together to make a difference through their annual senior service project. The students organized a community run to raise funds for AnCan.
The event was a success, with over 50 participants joining in to support the cause. Together, they raised over $700 to contribute to AnCan’s mission of empowering people through connection, support, and shared experiences.
“We find pride and joy in the fact that we could bring our community together for a run and spread awareness about the great efforts of the AnCan foundation,” said one of the organizers.
AnCan is grateful to the students, participants, and everyone who contributed to this incredible effort. Initiatives like this not only provide financial support but also help spread awareness about the importance of peer-led support.
Thank you, St. Pete High School IB seniors, for your hard work, creativity, and commitment to making a difference.
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.”
Here at AnCan, we like to highlight the perspectives of every person that enters our virtual “door”, so to speak. That includes religious perspectives; we are SO proud of how diverse our community is. So, as such, these views aren’t an official AnCan viewpoint.
Now that that’s out of the way, we just thought we would share a more religious perspective on a person’s cancer journey. In her blog, Stingray of Sunshine, author Dana Hendershot asks the question, “If it is truly a God blessing that my cancer was found early, then I also have to believe that God did NOT bless the person whose cancer wasn’t caught early.”
Author, and cancer survivor, Dana Hendershot, goes into depth about those words and phrases that others might deem comforting to someone going through cancer. Phrases like “God has his reasons” are the opposite of comforting for her.
CLICK HERE to read Hendershot’s blog post about her “Theological Quandary”
No matter our religious (or nonreligious) perspective, these sentiments may be felt by many in our community – regardless of which illness you may have.
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 23, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
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: Handcuffed by HMO, making the best of it. (bn)
Topics Discussed
Memory issues, but HMO won’t allow him darolutamide — try monotherapy abi?; tumors block TURP surgery, hoping ADT will ease surgeon’s job; AnCan pushes for better Orgovyx pricing; acupuncture and hot flashes; abi first, then enzalutamide — not the reverse; doing well on daro doublet after chemo; Orgovyx probably won’t thin the fog; mulling DEXA scan report; daro monotherapy addresses heart issue; filling the need for exercise with an e-bike; how much vitamin D?; grateful after switching to a GU oncologist; keep alert to side effects in Xgeva and Prolia; AnCan’s prostate cancer forum is back (https://ancan.org/forums); Embr Wave outdoors; landing an appointment with Oliver Sartor.
Chat Log
Harry Spila · 7:58 PM gotta go, take care everyone
AnCan – rick · 7:59 PM Happy riding!
Harry Spila · 8:00 PM ?
Mike Yancey – Oklahoma · 8:06 PM Gotta run
julian – houston · 8:06 PM great conversation, as always. Enjoy your Memorial Weekend!
Last month’s Under 60 Stage 3 & 4 Prostate Cancer meeting was small, intimate and produced a true gem from Down Under to benefit all AnCan’rs …
For the life of me, I forget what raised the topic … maybe a Death with Dignity discussion – but Aussie AnCan’r, Steve Cavill told us about the ICE “In Case of Emergency” Checklist Document that he and his wife Leonie, who occasionally attends our Care Partners Group, have both completed. Steve and Leonie reside in the suburbs of Melbourne and are currently heading towards mid-Winter.
This ICE Checklist takes much, if not all, the difficulty out of placing your key information in one place. Like your vital passwords to your laptop, phone or bank accounts; names of key individuals in your life and more. You know .. all that information making it possible for someone to piece your life together if you’re suddenly no longer with us.
Frankly it’s information we should all compile no matter how old. With this checklist guide at hand to march us through it, there can be few excuses. Just remember, this version of the ICE checklist was created in Oz, so it may not be fully applicable Stateside. If one of our US volunteers has time to ‘Americanize’ it, I feel sure it will be greatly appreciated – we have very few solicitors in the US and a few too many attorneys!
Here’s the checklist document in Word format ICE Document Template Now do your part …. and a BIG THANK YOU, Steve Cavill!!
