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
100% Free VA Healthcare Entitlement per the TERA Memo
For all Vietnam, Gulf War, Middle East and Southwest Asia veterans covered under the PACT Act of 2022, you are now entitled to FREE VA Healthcare with the exposure to toxic materials because of TERA (Toxic Exposure Risk Activity). Sep 20, 2023 — In August 2022, the PACT Act was signed and expanded benefits and services for veterans with toxic exposures during service. Even if you have a VA Disability rated at 10%-40% or never, ever applied for any VA Disability Rating, the veteran is now eligible for free healthcare.
A TERA memorandum, or toxic exposure risk activity report, is a document that the VA medical examiner reviews when a veteran files a disability claim that references the PACT Act. The PACT Act, or Honoring our PACT Act of 2022, expanded benefits and services for veterans who were exposed to toxins while serving in the military.
Presently VA FREE Healthcare is available for those who:
CATEGORY 1: Veterans who participated in a toxic exposure risk activity (as defined by law) while serving on active duty, active duty for training, or inactive duty training.
Note: many stateside & overseas military posts and bases have been declared Toxic Waste Sites. These are not automatic and must be Service-Connected.
CATEGORY 2: Veterans who were assigned to a duty station in (including airspace above) certain locations during specific periods of time.
On or after August 2, 1990, in: Bahrain, Iraq, Kuwait, Oman, Qatar, Saudi Arabia, Somalia, or the United Arab Emirates
On or after September 11, 2001, in: Afghanistan, Djibouti, Egypt, Jordan, Lebanon, Syria, Yemen, Uzbekistan, or any other country determined relevant by VA.
CATEGORY 3: Veterans who deployed in support of Operation Enduring Freedom, Operation Freedom’s Sentinel, Operation Iraqi Freedom, Operation New Dawn, Operation Inherent Resolve, or Resolute Support Mission and other designated locations.
EFFECTIVE ON ENACTMENT (AUGUST 10, 2022):Veterans who served in the Republic of Vietnam (from 1/9/62–5/7/75), Thailand at any US or Royal Thai base (from 1/9/62–6/30/76), Laos (from 12/1/65–9/30/69), certain provinces in Cambodia (from 4/16/69–4/30/69), Guam, or American Samoa or their territorial waters (from 1/9/62–7/31/80), or the Johnston Atoll or a ship that called there (from 1/1/72–9/30/77) may enroll in VA health care.
BETWEEN OCTOBER 1, 2022, AND OCTOBER 1, 2023: Veterans who served on active duty in a theater of combat operations during a period of war after the Persian Gulf War or in combat against a hostile force during a period of hostilities after November 11, 1998, and who were discharged or released between September 11, 2001, and October 1, 2013, may enroll in VA health care. Enrollment is free, there are no annual costs, and healthcare may be free as well.
In addition a Veteran is eligible for a TERA Memorandum placed into their medical records if the participated in a TERA activity which includes:
Handling, maintain or detonating Nuclear Weapons
Working with radioactive material
Using calibration and measurement sources
Being exposed to X-rays
Being exposed to radiation from military occupational exposure
Being exposed to warfare agents
Being exposed to nerve agents
Being exposed to chemical and biological weapons
As of March 5, 2024, veterans who meet the basic service and discharge requirements and participated in a TERA are eligible to enroll in VA health care, FREE, without applying for VA benefits; meaning applying for some disability rating.
Contact your local Veteran Service Officer (VSO) offer for details. Be aware the benefit is through the Veterans Healthcare Administration (VHA) and is not the same as applying for disability with the Veterans Benefit Administration (VBA) a Disability rating entitling you to money. There is VA Form 10-10EZ to get and read the instructions. When this form is submitted along with any supporting documentation usually on the VBA-21-4138 it goes off to a separate address in Janesville, WI. Although you should think about applying for VA Disability Benefits ($$$) because you may well be entitled to it.
VA Added More Presumptive Conditions for Military Conflicts Since 1990
The VA has added Male Breast Cancer, Urethral Cancer and Cancer of the Paraurethral glands to the list of illnesses presumed connected to military service in conflicts since 1990. The policy change covers veterans who served in Southwest Asia. Veterans whose claims are approved may also be eligible for benefits back to August 2022 when the PACT Act of 2022 was signed. Survivors of those with these cancers maybe automatically granted financial payouts. (AirForce Times – July 2024)
More Disabilities Added to What the VA Will accept
This spring the VA announced an update to the VA Schedule for Rating Disabilities (VASRD) specifically pertaining to digestive conditions. The changes add or modify rating criteria for 55 medical conditions in the rating schedule that incorporate medical advancements for treating certain disabilities and modern medical knowledge to compensate Veterans more accurately.
The three biggest changes that will impact you, as Veterans, include the new evaluations for Celiac Disease, Irritable Bowel Syndrome (IBS) and Hemorrhoids.
Beginning May 19, Celiac Disease—an autoimmune disorder that impacts how the body processes gluten—will have its own rating criteria specifically designed to address its disabling effects. Veterans with this condition were previously granted service connection and evaluated by analogy using rating criteria that ranged from zero to 30 percent. Now under a specific diagnostic code, Veterans will be eligible for an evaluation ranging from zero to 80 percent.
VA will also adjust the rating criteria for evaluating Irritable Bowel Syndrome, also known as IBS. Previously, VA offered zero, 10 and 30 percent evaluations for the condition. Under the new criteria, Veterans may be entitled to 10, 20, or 30 percent evaluations based on the frequency of symptoms; therefore, new rating criteria will always offer a compensable evaluation.
Finally, VA addressed the evaluations for both internal and external Hemorrhoids. Previously, VA assigned a zero percent evaluation if the condition was identified as mild or moderate. For more severe findings a 10 or 20 percent evaluation was warranted. With the new rating criteria set in the rating schedule, mild or moderate hemorrhoids will now qualify for the 10 percent evaluation.
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: 1) Pluvicto pre-chemo… maybe? 2) Agree your stage before seeking treatment– rd
Topics Discussed
New denovo Nx Gent treated at VA gets less then SoC; get all docs to accept the same staging before seeking treatment; removing the surgical clip makes him feel better; 4x Pluvicto wasn’t enough – continues but is he concordant?; natural nausea remedies; intraductal/cribriform 4+5 Gent recurs 30 months post-RRP; extensive mets creep up on a Regular – Pluvicto pre-chemo?; gratitude!
JNJ-63898081 (JNJ-081) A bispecific antibody that targets PSMA on tumor cells and CD3 on T cells. JNJ-081 is designed to promote anti-tumor activity.
AnCan – rick
sent: 5:32 PM
Tx Len
Chuck Snyder
sent: 5:32 PM
Thanks all for the suggestions!
Len Sierra
sent: 5:41 PM
Aloxi (palonosetron) is another anti-nausea medication in the same class as ondansetron and granisetron (5HT3 antagonists).
Steve Roux, North Michigan
sent: 5:46 PM
hey guys, I need to run. Great Meeting, AGAIN. Don’t forget to get that survey done. Get ‘er done!
Chuck Snyder
sent: 5:46 PM
Thanks Len.
Len Sierra
sent: 5:50 PM
This is from AI, so understand the possible errors, but here is what they say: The choice of whether to use CTCs or ctDNA in a liquid biopsy depends on the specific clinical question being asked and the stage of cancer. For example, CTCs may be more useful for detecting early-stage cancer or monitoring the response to therapy, while ctDNA may be more sensitive for detecting advanced-stage cancer or identifying resistance mechanisms.
Julian – Houston
sent: 5:52 PM
• United States +1 (646) 749-3129
AnCan – rick
sent: 5:53 PM
222-583-973
Len Sierra
sent: 6:08 PM
I agree, great job, Dr. John!
Thomas M
sent: 6:09 PM
Was it Dr. Eshana Shah, MD at Fred Hutch who was mentioned?
Ancan would like your input on its future planning and academic research. Please take a few minutes to complete The 2024 AnCan Survey which is at thislink.
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
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: Prognostic tools are a good starting point for discussing treatment options with your doctors. (bj)
Topics Discussed
Online resources to compare multiple prognostic tools (e.g., nomograms, PSMA, NCCN) to diagnose our disease; initial considerations for treatment decisions, such as: some urologists view younger men as better candidates for surgery — be careful of this bias when considering your treatment options; PROSTOX saliva swab for germline DNA testing and avoiding toxicity from radiation therapy; getting the right information so you can make an informed decision; post SBRT urination problems include: frequency, urgency, and discomfort (burning, stinging, tingling); clarification on SBRT (a treatment) and Meridian (a radiation machine); urgency and incontinence; active surveillance; RTIRE trial acceptance; AnCan survey emailed to you — let us know what you think; a little humor with emotional support llamas; Happy Veterans Day.
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: T doesn’t drop after Eligard shot – Dr. Jeff asks if it was given sub-cu (right) or IM (wrong)?? – rd
Topics Discussed
Newbie navigated to GU MO for 2nd opinion; better VA care in SF than Sacto; extensive mets takes AnCan’r by surprise; finally starting HT after 11 yrs; PSA of 0.6 calls for PSMA scan and resumption of Tx; in reverse – 4 yrs of doublet may allow break; KP approves HDR brachy – but where?; ctDNA trial; compare SBRT + IMRT to all IMRT; orgo dropped for mono daro; getting up once a night should be paradise; spin wheels at KP or listen to AnCan; wait on GU MO until after salvage RT; DR. Jeff asks if Eligard shot was administered correctly when T doesn’t drop?
Chat Log
Len Sierra sent: 6:24 PM Sampat specializes in GI malignancies
Matt M – Sac sent: 6:31 PM radiation is part of the triplet therapy tree as well yes? Or can be one of the “three”? Oligometastatic is “low volume” metastasis correct? Generally less than 5?
Alfredo in Houston, TX sent: 6:36 PM Enzalutamide, sold under the brand name Xtandi
Richard Tolbert sent: 7:51 PM Hello Dr. Jeff, I had 19 radiation treatments. A 3 month Eligard shot when hospitalized. I am on both Orgovyx and Xtandi.
Matt M – Sac sent: 7:57 PM Hi Guys, Solid night. gotta bounce. See you down the road…
Steve Roux, North Michigan sent: 7:58 PM Good meeting this week, thanks guys! I need to check out for dinner and personal tasks. See you next week.!
Alfredo in Houston, TX sent: 8:49 PM Goodnight everyone and Thank You – I learn something at every session.
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: Counseling hope to a sports hero who fears the worst (bn)
Topics Discussed
High-profile British cyclist Chris Hoy fears the worst — Rick wants him to know there’s hope; ADT doesn’t just give you reasons to be sad, it physically causes depression — and if you don’t treat it, everything else gets worse; jury’s been out a long time on ADT and dementia; ADT side effects don’t wear off, as with other drugs — they get worse; on a drug holiday, his PSA has stayed undetectable — but not so fast: it only counts if testosterone is going up; drug holidays can’t come right away — they have to be earned; PSA rises, rises, rises, after he’s taken off Lupron, but Kaiser doc hasn’t acted; VA may be his way out of the Kaiser trap; after hating it twice before, darolutamide now suits him well; that lead box is a clue he’s not about to get the FDG PET he needs for his non-avid lesions; whirlwind of confusion over the new Part D rules and the magic $2,000 number; now that radiation treatments are over, when should he get a PSMA PET scan?; off Lupron and on darolutamide monotherapy, he feels about the same — does that make sense?; he’s already doing what his intraductal diagnosis suggests he do; doc who says no to everything should be saying yes to PSMA PET
Chat Log
Jim Marshall, Alexandria, VA · 6:29 PM
On ADT & Abiraterone for 5 years,stayed active, volunteering, bike rides even when fatigued, keepig my mind active doing research on PC and Veterans Affairs. No time to feel sorry for myself. Jim Marshall, USAF(Ret)
Steve L · 6:37 PM
I was classified low volume metastatic even with 12 of 12 cores positive because I have only 2 bone mets. Does the seem right?
AnCan – rick · 6:47 PM
$@Steve L-ID-400003$… low volume Mx is different from low volume Biopsy. Very different kettles of fish
Jim Marshall, Alexandria, VA · 6:48 PM
Been on Monthly PSA & testosterone blood tests since the beginning. Jim Marshall
Steve L · 6:49 PM
No Decipher. Gleason of 4 plus 5.
Steve L · 6:51 PM
Great that Bruce has had extended non-detectable PSA
AnCan – rick · 6:55 PM
I would disagree with @Jeff M. A Deicpher test at this point is not going to tell you much. It is designed to predict recurrence. 4+5 tells you all you and your med onc need to know.
Steve L · 6:59 PM
My treatment is ADT(lupron), Abi (now with Dexamethasone}. Also had Provenge in June/July.
Steve L · 7:12 PM
Jeff, After 2 years of undetectable, PSA started increasing in January and I was classified castrate resistant. No radiation nor surgery except turp. Denovo Mets. Most recent PSA 0.59
Doug D · 7:34 PM
Unfortunately, I need to leave early for an appointment. I will be attending these sessions regularly. I really appreciate your help, guidance, and time. Thank you very much.
Steve L · 7:51 PM
I recently proposed circulating tumor DNA test,
PSMA scan, and radiation to primary and mets with negative response. Any recommendations for a second opinion? Perhaps MD Anderson or ????? I am in Seattle area.
AnCan – rick · 7:55 PM
Steve – this a big question that should be posed to the group. Too much to handle via Chat window.
Steve L · 8:01 PM
Okay, I will try next meeting if no time today.
Thomas M · 8:04 PM
Good night , Gents,,,,,,,Thomas
dan: alexandria, virginia · 8:12 PM
I have to leave… thanks for advice, Gents. Night, dan
Low/Intermediate Prostate Cancer Video Support Group, Oct 21, 2024
Low/Intermediate Prostate Cancer Support Video Support Group, Oct 21, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
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: A second opinion from a creditable source is a good way to verify an initial diagnosis. (bj)
Topics Discussed
New diagnosis researching HiFu and TulsaPro; PROMISE Study for genetic testing; focal treatment limitation; Interpreting nomogram results to choose between surgery or radiation; importance of getting a second opinion; dealing with anxiety as part of the decision process; helpful tip — build a list of questions before seeing your doctor(s); understanding radiation treatment options — SBRT, Cyber Knife, etc.; Are rectum spacers still needed for radiation treatments; overcoming analysis paralysis; nadir outcomes for radiation treatment; decision regret following prostatectomy; transitioning from active surveillance to a definitive treatment; SBRT experience update; Prostox (cheek swab) for DNA/genetic testing; Decipher testing for DNA/genetic testing; low dose brachytherapy.
Chat Log
AnCan – rick
Promise study https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
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
With Open Enrollment starting on October 15, two AnCan’rs asked for advice this week on Medicare plans – and yes it’s complicated. AnCan recommends you watch the webinar we held last October to help understand the difference between traditional Medicare and Medicare Advantage. The dollar details are different for 2025 but not the principles.
Lastly, my own health insurance broker, Kim Umphres, is licensed to write in 15 States. He offered his help to all in last year’s webinar, so take him up umphres100@yahoo.com
Since the same questions are likely in the mind of many others, I have written this Blog Post. I am no expert but this may illustrate how I think about my own health insurance. Sadly, I cannot help you all individually – consult with your own Medicare health insurance for the best advice.
Onward & upwards, rick
Many of us on Medicare are faced with renewing our plans – or buying a plan for the first time. If you choose not to buy a plan to supplement Medicare, it leaves you exposed to roughly 20% of your medical costs. That can amount to very big bucks!
The main choice is whether to opt for Traditional Medicare + a Supplement (Medigap) Plan + a Drug Plan. Alternatively, a Medicare Advantage Plan can look attractive but comes with warts.
If you are low income and cannot afford the available plans, there are Medicaid alternatives for Medicare supplements.
Advantage Plans (Plan C) restrict your choice of Health Care Providers since they are based on Provider Networks. If you need a particular type of specialist, for example a genitourinary medical oncologist, or a neurologist who specializes in MS, this can be a problem with Advantage. Community Standard of Care is often the byword. If you choose an Advantage Plan, be sure it covers HCPs who practice at a Center of Excellence.
Advantage Plans usually have small monthly premiums, sometimes zero. They also include co-pays when you visit a Provider. Co-pays can be anywhere from Zero dollars to several hundred for fancy scans like PSMA, so you have to look carefully at the coverage. The more you use the plan, the more you pay. Some may include coinsurance – avoid those altogether. It’s a nuance we won’t get into here.
You can also go out of network to a Provider of your choice, but copays will be significantly higher. For example, you may pay $50 for a visit to a specialist in-network. Out-of-network, the cost can be significantly higher – often 40% of the approved Medicare fee for the service sought.
Advantage Plans often have a Gatekeeper who must approve any referral. You may not be able to self refer. Also there can be stricter intervention by the Plan to pre-approve procedures.
Drugs are included, however there is also a co-pay for some generic and all branded drugs that depends on the tier in which they are classified in the Plan’s drug formulary. List the drugs you use and find the cost. That said, the good news in 2025 is that drug out-of-pocket costs cannot exceed $2,000.
Traditional Medicare with a Supplement (Plans F,G,K,L,M,N) may not restrict your choice of HCPs – you can go anywhere in or out of state provided the Provider accepts Medicare.
Traditional Medicare Supplement Plans cover the 20% not covered by Medicare A and B. You pay a monthly premium that varies according to the plan chosen. The different supplement plans have different features. The more you pay in monthly premium, the less the restrictions and the lower the deductibles.
In addition you will need drug coverage (Plan D). Again that includes a monthly premium, plus a charge for each drug, so you have to shop plans against your Rx. For 2025, drug out-of-pocket costs cannot exceed $2,000.
As long as your chosen Provider accepts self-referrals, there may be no Gatekeeper. Procedures and protocols may still be subject to pre-approval.
Since Advantage Plans can be more profitable for the Payer, they offer lots of bells and whistles to sell the plan – for example subsidies for OTC products. One plan I was offered recently, actually pays the Holder $5/month!
I’m trained as an economist so I look at risk reward. I compare the annual maximum out-of-pocket cost between the Advantage Plan and the Traditional Medicare Plans (inc. the drug plan).
For traditional Medicare There is a required monthly premium for both the Supplement and the Drug Plan. Add those together and multiply by 12. In addition you can have out-of-pocket drug costs, especially if you are using expensive cancer drugs, but that cannot exceed $2,000 in 2025. Btw, the $2000 will decrease in subsequent years.
Each Advantage Plan has a stipulated maximum out-of-pocket cost for in-network and out-of-network Providers. In-network will be less. I look at the out-of-network max, and add to that any monthly premiums that are usually minimal. Drugs are included with a co-pay, but that co-pay cannot exceed $2,000 in 2025.
Now that I know what I HAVE to pay with Traditional + Supplement vs what I could pay with Advantage depending on my usage, I can compare whether I want to roll the dice to save money.
If the Traditional route costs me $500 in monthly premiums, I know I am out-of-pocket $6,000 plus my drug copay costs capped at $2,000.
Say my Advantage Plan has a monthly premium of $25, then for sure I am out of pocket $300. The rest depends on how much medical care I use. Assume ( the economist’s favorite word) the out-of-pocket for out-of-network in my plan is $8,000, that is my max. I still have to consider up to $2,000 for drugs.
Let’s compare!
IN THE WORST CASE I am spending $6,000 (+ drugs) for Traditional Supplement versus $8,300 (+ drugs) for Advantage. The Advantage could be $2,300 more pricey.
IN THE BEST CASE, I am out-of-pocket $300 (+ drugs) for Advantage vs $6,000 (+ drugs) for Traditional Supplement, so I could save $5,700 with Advantage.
Risk-Reward… do I want to roll the dice to save up to $5,700 that could cost me an extra $2,300??
Each person has to make that decision.
There’s more to it than this. For example HMO’s like Kaiser Permanente may make it even harder to go out of network. And with KP, you are guarantied to only get community Standard of Care medicine . As I often say, KP is great as long as you don’t get seriously ill.
AnCan strongly suggests finding a local Medicare Health Insurance Agent to help you sort through this morass. Plans change by State, so your agent must be licensed in your State.
And one last thing. The first time you enter Medicare there is NO underwriting. No matter your preconditions, you are accepted to any Traditional supplement or Advantage Plan. In subsequent years, you may be subject to underwriting should you choose to switch plans. You can be restricted from changing between an Advantage and Traditional Supplement Plan.
AnCan recommends watching our webinar from last October to help understand the difference between traditional Medicare and Medicare Advantage. 2025 details are different but not the principles.
We also recommend you visit the Triage website and attend its free webinars. Many of their Medicare resources can be found at https://triagecancer.org/medicare-cancer
For differences between the Traditional Supplement Plans, consult with a specialized Medicare Health Insurance agent. F and G are the best options. There are also high deductible options. An agent can also help you compare Advantage plans by various criteria, like maximum out-of-pocket for out-of-network care.
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.