Low/Intermediate PCa Video Chat, Nov 11, 2024

Low/Intermediate PCa Video Chat, Nov 11, 2024

Low/Intermediate PCa Video Chat, Nov 11, 2024

Low/Intermediate PCa Video Chat, Nov 11, 2024

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 this link

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.

Join our other free and drop in groups:
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.

Chat Log

John A
https://www.mskcc.org/search#q=prostate%20cancer%20nomogram&t=All&sort=relevancy

Boykin Jordan
NCCN Guidelines for Prostrate Cancer
https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459

Boykin Jordan
PROSTOX
https://miradx.com/prostox

AnCan  – rick
Ming Zhou, MD, PhD | Mount Sinai, NYC  https://profiles.mountsinai.org/ming-zhou  Contact to find address for 2nd opinion.

Boykin Jordan
Artera
https://artera.ai/for-patients

Boykin Jordan
RTIRE Trial
https://www.primrmed.com/cancer-clinical-trials/rtire-trial

Eric- Atlanta
I received it! Just bad timing before the weekend.

Jim Stewart   Reno, NV
Good night everyone, grandson duty!!

More on Medicare 2025: Drug Costs

More on Medicare 2025: Drug Costs

More on Medicare 2025: Drug Costs

UPDATE – PLEASE SEE IN PURPLE AT THE BOTTOM

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.

Attribution: UPDATE – Slides are now available at Understanding Medicare Part D Changes and Their Impact on Patient Out-Of-Pocket Costs in 2025  prepared by JnJ and presented by NAMAPA  and JnJ.!!

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!

 

Low/Intermediate PCa Video Chat, Nov 11, 2024

Low/Intermediate Prostate Cancer Video Support Group, Oct 21, 2024

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.

Join our other free and drop in groups:
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 – rick
Mack Roach was my rad onc.

Bob S – Maryland
link for nommagram

AnCan – rick
Dr. Mark … mperloe@ancan.org

Bob S – Maryland
bye all.

Low/Intermediate PCa Video Chat, Nov 11, 2024

Low/Intermediate Prostate Cancer Video Support Group, Oct 7, 2024

Low/intermediate Prostate Cancer Video Support Group, Oct 7, 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.

Join our other free and drop in groups:
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 careful review of treatment options can help you avoid decision regret. (bj)

Topics Discussed

New prostate cancer diagnosis — how do I avoid decision regret?; prostate cancer treatment considerations — surgery vs radiation; using nomograms to predict likelihood of recurrence; PROMISE research study and germline DNA testing; decipher test; external beam radiation; cyber knife; somatic DNA testing; catheter; Gleason score; TULSA Pro; electroporation; kegel exercises; Prostate Cancer Research Institute (PCRI); RTIRE trial update; COVID and PSA spikes; High-Intensity Focused UltraSound (HIFU) and other focal treatment options; applying study results to your situation.

Chat Log

AnCan – rick
http://nomograms.mskcc.org/Prostate/index.aspx

George Toronto
I have a question for Michael

George Toronto
cancel my question please

Causley
Michael – this is Causley E.  I’m in the group with you.  I had surgery 2 years ago and can share my experiences with you when time permits.

Boykin Jordan (DC Metro)
PCRI – https://pcri.org/

Boykin Jordan (DC Metro)
PCRI (YouTube) – https://www.youtube.com/c/thepcri

AnCan – rick
PROMISE test – free trial by mail.  https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar

AnCan – rick
Dr. Ming Zhou https://profiles.mountsinai.org/ming-zhou

Low/Intermediate PCa Video Chat, Nov 11, 2024

Low/Intermediate PCa video chat, Sep 23, 2024

Low/Intermediate PCa Video Chat, Sep 23, 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.

Join our other free and drop in groups:
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: RTIRE trial — a patient perspective (bj)

Topics Discussed

Tulsa Procedure (Tulsa Pro) questions; patient experience with RTIRE trial; types of biopsies (transrectal and transperineal); ArteraAI prostate cancer test; radiation treatment considerations when urinary conditions exist; when do I belong in AnCan’s High Risk/Recurrent/Advance Group?; interpreting prostatic capsular abutment as a risk factor; positive feedback from the 2024 PRCI Men’s Health Conference attendees; AnCan Low/Intermediate Group success stories.

Chat Log

Boykin Jordan (DC Metro)
What is the name of the trial that Stuart is referring to?

AnCan – rick
electroporation + IMRT, Boykin. Let me see if I can find name

Dennis S
Thank you. I was hoping to respond to the previous speaker

AnCan – rick
RTIRE – https://pubmed.ncbi.nlm.nih.gov/39054460/

Jim Stewart   Reno, NV
good night all…grandkid duty calls!!!

Low/Intermediate PCa Video Chat, Nov 11, 2024

Low/Intermediate Video Chat, Sept. 9, 2024

Low/IntermediateVideo Chat, Sept. 9, 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.

Join our other free and drop in groups: Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/; Veterans Healthcare Navigation…1st & 3rd Tuesdays @ 8.00 pm Eastern https://ancan.org/veterans/

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: The use of different labs to measure PSA, can lead to inconsistent results. CE

Special Note: Note: Rick Davis and Alexa Jett enjoyed being “live” with Dr. Mark in person for this meeting, also Andrew makes an appearance.

Topics Discussed: High PSA with biopsy; research of treatment protocols; active surveillance; MRI guided biopsy; PI-RADS 4&5 lesions; positive cores not showing up on MRI; anxiety with regards to active surveillance and treatment; elevated PSA – standing alone does not necessitate biopsy; use the same lab for better consistency in lab results; change in tumor size; diet; inflammation; IRE clinical trials; focal treatment; radical prostatectomy; cardiovascular risk factors and pacemakers; risk of infection while wearing a catheter; Decipher score; PCRI Conference; Centers of Excellence; PET scans; potential of cancer spreading outside of the prostate; abnormalities in bladder and rectal wall; SBRT; ProAct adjustable continence therapy; hyperbaric oxygen therapy and its application to prostate cancer treatment; Prostox score; reminder of the other groups such as Men Speaking Freely.

Chat

Eric M. Atlanta
Theranostics I believe is the name?

John A
Igancio, there are several ways we deal with scanxiety. Behavior: exercise, other activities ie yoga, attending groups and sharing. Cognition: distraction, cognitive therapy techniques, mindfulness, meditation. Medication: as needed short term antianxiety meds for panicky anxiety or sleep, or antidepressants which block panicky anxiety. Therapy: behavioral, psychotherapy. Time can lessen it though as rick said even us oldtimers get it, but it’s not so fresh and harsh.

Ignacio
Thank you John! Actually, I do not believe I have “scananxiety” as much as “results anxiety”, not only from scans but also from PSA tests. However, time and experience have helped quite a bit. I have accepted my situation and am willing to take actioin if needed!

Ignacio
Thank you!

John A
MedGasRes. 2018 Oct-Dec; 8(4); 167-171. doi:10.4103/2045-9912.248268 Further application of hyperbaric oxygen in prostate cancer. Lu et al

Gregg – Metro Detroit
Adios guys – gotta go!

John A
clarify spelling/pronunciation: SpaceOAR hydrogel is one brand of the 3 Mark mentioned

Ignacio

Thank you all! Gonna catch the rest of the 9ers…