AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, 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!
Editor’s Pick: Don’t use a PA or NP to make treatment decisions; closely followed by – audit your medical records! (rd)
Topics Discussed
Deferring treatment on recurrence ain’t a great idea; newbie needs MSKCC referral and we personally endorse two docs; check your medical records – you might find something that never happened; exercise recs for man with heart issues; PROMISE shows no mutations; Payer forces switch of RT provider at last minute; here’s why you avoid a PA or NP if a treatment decision is next; does cribriform change treatment?; value of AI retrospective opinion – even if available; treatment veteran moves to Jevtana; why genetic counseling before germline test; abi-enz sequencing discussion
If any of you new people are Veterans, contact me at CaptJim@AnCan.Org Jim Marshall, USAF(Ret)
Luther
sent: 6:59 PM
enjoyed tonight’s Meeting and will register at conclusion of meeting
Adam
sent: 7:01 PM
Definitely wasn’t covering your ass. Thanks for another great session guys. I have to check out. Survey done!
John A
sent: 7:08 PM
thanks Adam
Steve Roux, North Michigan
sent: 7:10 PM
I visit my patient portal after every office/lab visit. There is a note at the top of the page to contact them if there are any errors. I have done that in the past to correct notes from my 1st med onc.
AnCan – rick
sent: 7:14 PM
Max heart rate – 220 minus age
Alfredo in Houston
sent: 7:16 PM
Steve, all the organizations that care for my wife and I use the same Electronic Medical Record, and they are able to share test results as well with our permission. We pay attention to our After Visit Summaries after every contact. Unfortunately, this is not true for all patients all over the USA
Julian – Houston
sent: 7:21 PM
have to leave early – Great discussion
Alfredo in Houston
sent: 7:30 PM
Agree with everything Rick just said! Unfortunately I have to go. Thanks to all y’all; See you next time.
Steve Roux, North Michigan
sent: 7:39 PM
hey guys – great meeting – I gotta run tho. See you next week!
Thomas M
sent: 8:06 PM
See you all next time, gents. Thanks.
Jim Marshall, Alexandria, VA
sent: 8:07 PM
Jim Marshall. 703-338-7341. CaptJim@ancan.org Veterans
A couple of weeks back, we posted Medicare Health Insurance Choices that explained the differences and pitfalls between traditional Medicare Part A and B plus Medigap insurance plans to Part C, Medicare Advantage. Click the link earlier in the previous sentence if you missed it.
As many already know, there is a Part D that covers drug costs. It is either purchased as a separate plan or rolled into Part C Advantage. Drug coverage is significantly changing this year, and AnCan has learnt that many of our participants are not yet aware. Hardly surprising because CMS as well as the various stakeholders like Payers and providers have done very little to let us patients know. Why should they? – we’re only the ultimate consumer!
The same cannot be said of JnJ who started educating patient advocate organizations this past May. In October and November JnJ created more education that includes a webinar and a round table coming up hosted by NAMAPA, the National Association for Medication Access and Patient Advocacy. Likely you have never heard of them. I hadn’t and it hardly rolls off the tongue. Nonetheless, the webinar was very instructive and you can watch it here.
The BIG difference for us patients is that no matter what, out-of-pocket drug costs for 2025 cannot exceed $2000. You heard right – for those of you on specialty oral medications like Nubeqa (darolutamide for prostate cancer) or Aubagio (teriflunomide for MS), normally sourced via specialty pharmacies, you will meet this cap January. And you’ll even be able to spread the payment over 12 months! More on that to follow.
But first, how is this coming about. Well it tracks back tot he changes brought about by the Inflation Reduction Act signed by President Biden in 2022. He promised to make drugs more affordable, and this is a part of the plan. As you can see in the slide to the left comparing 2024 to 2025, the donut hole has been eliminated. In its place, the Payer (Plan Sponsor) and Pharma (manufacturer) are paying more. While the cost saving is very positive, it will likely impact us patients in other ways:
Your formulary choice may be reduced – so CHECK your medications before you renew.
Premiums for Part D may increase – even though out of pocket is capped. If you are unlikely to spend $2,000, look for a plan that defers your co-pay as long as possible
Higher premium plans should cover a larger portion of drug costs earlier. Your premium does NOT count towards the $2,000, so include premiums in your cost calculation to figure your exposure.
If you have a co-pay or co-insurance on your drugs, no matter if it’s Part C or D, it cannot exceed $2,000. However the amount you pay and who you pay it to may become a bit of a moving target. We mentioned earlier that you will now have the opportunity to spread your payments over the calendar year – or the remainder of it, if you sign up late or incur costs late in the year. The Medicare Prescription Payment Plan (M3P) takes your share of drug costs, up to a maximum of $2,000, and spreads them over the remainder of the year.
The simple example is for those on specialty pharmaceutical drugs like Nubeqa or Aubagio. Since your share of the drug cost is almost certainly going to be greater than $2,000 in January, if you opt in for M3P BEFORE going to the pharmacy or ordering from your mail order pharmacy, you’ll pay nothing on picking up/shipping the drugs. Subsequently, you’ll get a separate bill from your Payer for $167.67 monthly over 12 months, and pay no more for any of your drugs the rest of the year. There is NO interest, no late fee penalties, and you get a couple of months leeway, but there are penalties if you never pay. You can sign up for MP3 with your Medicare Payer/Plan Holder BUT not in the pharmacy for 2025. So if you arrive at the drug store prior to enrollment, you’ll be charged $2,000 to take your pills home. You can leave the pills, go home, enroll and return to the pharmacy 24 hours later and pick up without payment to the pharmacy..
If you don’t start this expensive drug until mid year, say September, and you’ve spent nothing on drugs prior, then the $2,000 is billed over the last 4 months at $500/month.
But what if your drug costs are more lumpy – they go up and down the whole year. In that case, the payments get recalculated each month and the monthly bill will vary.
There is a strange case too, if you know your co-pay is the same each month – say $55. This really throws M3P, and as you can see to the left, you’ll pay the same $660 (12x $55) either way but in different amounts each month if enrolled in M3P.
Finally, let’s address the Drug Benefit plans that many of you enjoy through PAN, PAF and others. Even the drug discount cards from Pharma that some receive. Whatever you receive, or however you receive it, does NOT reduce your $2,000 exposure. You advise the pharmacy that you have a benefit, and they bill the Benefit Provider (PAN, PAF, Pharma ??). The credit will be applied against your drug cost, although eventually you may still be liable for up to $2,000 co-pay when the benefit runs out.
Looking at the first slide, it seems to AnCan that these benefits that are often funded by Pharma, eventually flow back to Pharma and the Payer. How they will credit them against what the patient owes is not yet clear. Before you get too crazed, our guess is the system has to change. These benefits need to be channeled directly to patients who cannot afford $2,000 p.a. AnCan is on it and already reaching out to NAMAPA and others to promote more of a direct, income based subsidy possibly reaching more beneficiaries. One thing we have heard – APPLY EARLY for 2025 in the event you are in line to receive a subsidy.
PLEASE BE SURE TO SIGN UP FOR THE M3P PROGRAM UPFRONT. EVEN IF YOU OWE $2,000 IT WILL BE BILLED IN 12 INSTALLMENTS. WE STILLL HAVE TO FIGURE HOW YOU WILL BE REIMBURSED IF YOU RECEIVE ASSISTANCE.
IF YOU HAVE A GRANT BE SURE TO PROVIDE DETALS TO THE PHARMACY ASAP. NOTWITHSTANDING, ALSO REACH OUT TO YOUR GRANTOR TO FIND HOW THEY WANT TO COORDINATE THE GRANT. IT’S STILLL A MOVING TARGET!
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, 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!
Editor’s Pick: Use Pharmacists to fill in for HCPs for drug interactions (rd)
Topics Discussed
New man on Pluvicto, but is he concordant?; are HCPs diligent in checking drug interactions?; darolutamide and rosuvastatin – heads-up; get a clear treatment plan before starting RT; spot RT done – maybe a drug holiday next; as Tx progresses, anxiety drops; 18 days way too short to taper prednisone; do vibration plates help?; Embr helps another man – and maybe two; use your pharmacist to discuss drug interactions
Chat Log
david opp sent: 5:25 PM
Hi Jerry.
Keith Lawrenz, Ventura, CA sent: 5:46 PM
Frank if you are interested in chatting 1×1 please reach out to me
Jim Marshall, Alexandria, VA sent: 5:52 PM
Frank. I have ATM as Somatic too. Jim Marshall
AnCan – rick sent: 6:03 PM
Dr. J … you have to recognize that Dr. Jack is neurotic about all his numbers.
Steve Roux, MI sent: 6:11 PM
drugs.com. easy check for interactions.
Steve Roux, MI sent: 6:31 PM
Good meeting guys but I need to get some dinner! See you all next week. And…kudos to Rick for the great blog on Medicare!
Julian – Houston sent: 6:31 PM
time to go – thanks for another great evening!
Adam sent: 6:32 PM
Gotta go Rick but thanks for another session. Was gonna let you know I finally got into seeing Dr. E at Houston Methodist so you should get that toaster in the mail!
Richard Fiske sent: 7:06 PM
Hi Thuc: I haven’t dived for a while b/c I am on three blood pressure medications. One thing I learned in the Navy was that only Ibuprofen underwent hyperbaric testing. I had one friend who was on flexeril who’s heart stopped coming back from 190ft. I wouldn’t dive on while on any serious drugs.
AnCan – rick sent: 7:08 PM
Embr watch https://embrlabs.com/
dan: alexandria, virginia sent: 7:10 PM
great meetings guys… I have to get to my family meeting…. O&U
Covered service for Vietnam era veterans means active service in:
The Republic of Vietnam from Jan. 9, 1962, to May 7, 1975.
Thailand at any U.S. or Royal Thai Base from Jan. 9, 1962, to June 30, 1976.
Laos from Dec. 14, 1965, to Sept. 30, 1969,
Cambodia at Mimot, Krek, or the Kampong Cham Province from April 16, 1962, to April 30, 1969.
Korean Demilitarized Zone (DMZ) from April 1, 1968, to Aug. 31, 1971.
Guam, American Samoa or territorial waters thereof from Jan. 9, 1962, to July 31, 1980.
Johnston Atoll or on a ship that called at Johnston Atoll from Jan. 1, 1972, to Sept. 30, 1977.
Air Force or Air Force Reserve veterans who regularly and repeatedly operated, maintained, or served aboard a C-123 aircraft know to have been used for spraying herbicides.
Qualifying service for Gulf War era veterans means you either:
Performed active military service in any of the following countries during or after the Gulf War (Aug. 2, 1990): Bahrain, Iraq, Kuwait, Oman, Qatar, Saudi Arabia, Somalia or the United Arab Emirates. Or;
Performed active military service in any of the following countries after the start of the Global War on Terrorism (Sept. 11, 2001): Afghanistan, Bahrain, Djibouti, Egypt, Iraq, Jordan, Kuwait, Lebanon, Oman, Qatar, Saudi Arabia, Somalia, Syria, United Arab Emirates, Uzbekistan or Yemen.
Nuclear and Radiation-Exposed Veterans
The PACT Act expanded veterans who are eligible for presumptive service connection for diseases which manifested as a result of radiation exposure by adding onsite participation in the following radiation-risk activities:
In one of the largest-ever expansions of Veteran health care, all Veterans exposed to toxins and other hazards during military service—at home or abroad—are now eligible for VA health care.
At the direction of President Biden, VA is expanding health care eligibility to millions of Veterans, including all Veterans who served in the Vietnam War, the Gulf War, Iraq, Afghanistan or any other combat zone after 9/11, years earlier than called for by the PACT Act. These Veterans will be eligible to enroll directly in VA health care without first applying for VA benefits.
Additionally, Veterans who never deployed but were exposed to toxins or hazards while training or on active duty in the United States will also be eligible to enroll.
Summarizing a webinar: Pet Aging, Illness, and Loss
Here at AnCan, we like to consider all aspects of our community’s livelihood. Whilst juggling our various illnesses with the demands of everyday life, some of us have the honor and privilege of sharing our lives with animals that love just as deeply as we do. Many have been there for us during the most difficult times of our lives. Through diagnosis, treatment, recovery, daily living, grief – you name it.
Trigger warning: Pet loss
I recently got the chance to listen to a webinar about grieving and end-of-life care for pets. This webinar, titled “Pet Aging, Illness, and Loss”, was hosted by Mettle Health. I’ll link it down below. Their guest speakers were veterinarian Mary Gardner & host BJ Miller. Mary Gardner specializes in end-of-life care for animals and euthanasia. It would seem to me that she also specializes in compassion; compassion for the pets she encounters and for their human caregivers.
I’m actually typing part of this blog post one-handed, as a newly rescued kitten purrs in one of my arms. We found her underneath a car just the other day. The life of an animal lover can leave our hearts so full. As cherished members of our families, pets provide love, comfort, and even health benefits – making their end-of-life care an equally crucial and compassionate endeavor.
I had to prepare myself for this one. Anyone who knows me or who’s taken a class with me will know how much my pets mean to me. And when you’ve had as many pets and emotional support animals as I have, you’ll know what it’s like to grieve them. It can be just as painful as losing a human loved one; and for me, the impact of the loss of a pet and the loss of a human are exactly the same.
Mary addresses an important question that doesn’t have a clear answer.
“How do I know when it’s ‘time’?”
They start by talking about the role of pets in our lives and how it’s changed over time. These days when people come to her for help, their pets have lived their lives in the lap of luxury, with all the pillows and modern comforts they could want. That’s an exaggeration, but you get the picture!
I remember a time when it was common for dogs to be chained up outside. Honestly, that’s still the case in some homes. Cats did, and still do, aimlessly roam the streets. The first dog I ever grew up with was named Jack. He was an absolutely sweet & protective German Shepherd mixed breed dog who lived his life often, but not always, chained to my grandparent’s front yard in the inner west side of San Antonio, TX. It was a different time, with a different attitude towards pets. I spent as much time outside with him as a 6-7-8-9-10-year-old could.
Working animals have their place, too, and no judgment at all for people whose animals/pets are working pets. The grand takeaway from this, however, is that no matter what, we still want them to have as happy and pain-free of a life as possible. It’s about compassion and care.
There are so many reasons to euthanize. Quality of life for the pet & caregiver fatigue are probably the biggest things to consider. Think about your “monetary budget, your physical budget, and your emotional budget”. I thought that was a great way to phrase it.
The entire point of euthanasia (and of this webinar) is to be able to minimize suffering, no matter their role in our lives. It’s a gift, really.
Quality of life
So, how can you tell if a pet is near its “time”? Gardner gives examples based on breed and ailment. Arthritis in big dogs, breathing problems, and more. Then she sprinkles in answers as to how she might assess the quality of life of this pet. She will go through a list of questions with clients that give her an idea of how to guide them. Consider this: How do they live? Is it living?
Sometimes their physical body is ready, but their mentality may not be. It can be hard to judge when it’s time because of that.
One thing Gardner stresses is that “It will always seem too soon until it’s too late”. Euthanasia is not about giving up. “It’s about ensuring that their goodbye is good.” Here’s something that hit home for me: if you know for sure it’s time, they’re usually really suffering.
When I heard that, I had flashbacks of moments where I regretted waiting too long. If only I’d had someone to tell me that the kindest thing to do would be to euthanize my pets before it was too much for them. My beloved Green Spotted Puffer fish, Puffy, comes to mind. I regret euthanizing when I did, and wish I’d proceeded sooner. I still feel a tinge of sadness every time I think about him. I’ve got to remember, though: he lived a very long, full life for a pufferfish in captivity. The happy, blissful days, far outweigh and outnumber that time in our lives. Hold on to those memories. Don’t put yourself down for feeling like you didn’t make the right call at the right time.
Quality of life continues to be a question that doesn’t have a clear answer. You’ve probably heard the reassurance, “Don’t worry, you’ll know when it’s time”. Well, actually, it isn’t that easy. You may even hear that sentence from veterinarians themselves. Unlike their human counterparts, veterinarians are typically not trained to have these end-of-life conversations. They may know the ins and outs of veterinary care, but they may be a little bit lacking in the palliative care and hospice departments. Of course, this doesn’t apply to all vets.
For Gardner, some people call her saying “We’ve had such a terrible week, I think it’s time”. Or, the opposite – “We had such an amazing week, I think it’s time”.
Caregivers
The webinar also talks about the role of caregivers. Human caregiving and animal caregiving have the very same symptoms. Anyone surprised? Not me. Gardner noticed this when she went to a conference about end-of-life care for humans. Caregivers for animals express the very same issues. It’s an emotional, physical, and monetary toll. This can be especially true for people in our AnCan community – those of us who are also living with cancer or chronic illnesses, or who are also caregivers to a beloved human.
I remember times when I declined to go out with friends on trips, or even a single night out when I had my rat, Pokka. Rats have a shockingly short lifespan, and this little rat and my pufferfish were my world at the time. I felt so bad leaving Pokka in his cage for too long, as he couldn’t live with any other rats. For 2.5 years, I just needed to be home for him. Although I felt bad for declining so many invitations from family and friends, I don’t regret spending a single second with my Pokka. I knew that my time with him was limited – especially as he got older, and his body started to deteriorate. For me, it helps to remember that those 2.5 years are just a drop in the bucket compared to how long my life could potentially be. It was all worth it.
It’s ok to feel frustrated at the situation. You may be feeling emotionally and physically tired. It’s possible to simultaneously be tired of the burden of all your pet’s problems, and want nothing more than to be there for them. Try to get support. Respite care is ok to ask for, even for pets. No judgment, whatever your situation is. It just is hard.
As with human care, hospice and palliative care are different (but related). Gardner works with clients to navigate both forms of care. Both she and BJ talked about how hospice and palliative care have negative connotations in the eyes of many people. Palliative care is the pursuit of a good quality of life. Hospice is all of that, but when the end is in sight. Have these conversations about palliative care and hospice if you feel your pet needs it.
Overall, this was a wonderful listen. Check out the full webinar here:
Mettle Health is dedicated to helping those with illnesses and conditions navigate their lives in a meaningful way. Take a look at the rest of their YouTube videos here:
There are some support groups you can find online, in addition to Facebook groups. I’m personally part of a private pet loss group on Facebook. Here are some resources I found just with a quick Google search:
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, 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!
Editor’s Pick: What do medical medical marijuana and estradiol (E2) have in common? … cardiovascular risks (rd)
Topics Discussed
Is this Newbie getting enough radiation for his high risk situation?; darolutamide monotherapy or maybe a drug holiday?; ARX517 trial – PSMA antibody drug conjugate that carries cytotoxic payload; addressing sleep issues; otc CBN; medical marijuana comes with cardiovascular risks; switching your provider for cause; estradiol and phytoestrogens; early success with AR degrader ARV766; delaying Pluvicto #3 and considering PARP-i; is it a flare or progression?; fenbendazole
Chat Log
Jim Marshall, Alexandria, VA
sent: 3:23 PM
If anyone is facing Open Heart Surgery contact me and I can give you somethings the Surgeon might not mention. Jim 703-338-7341
Jim Marshall, Alexandria, VA
sent: 3:30 PM
Janssen also makes a Generic version oof Abiraterone (ZYTIGA). Have taken it as a generic
After being on Eligard + Abi for 5 years, it took 13 months to recover any testosterone after being on the 2 drugs for 5 yrs. a 90-day Eligard shot can last much more than 90 days
and this is a part of the plan. As you can see in the slide to the left comparing 2024 to 2025, the donut hole has been eliminated. In its place, the Payer (Plan Sponsor) and Pharma (manufacturer) are paying more. While the cost saving is very positive, it will likely impact us patients in other ways:
But what if your drug costs are more lumpy – they go up and down the whole year. In that case, the payments get recalculated each month and the monthly bill will vary.
Covered service for Vietnam era veterans means active service in: