Even though bone scan snd PSMA PET showed no mets MSK radiologist and MO prescribed 26 sessions of radiation and 2 years of ADT . Since my PSA was 61 they are treating my high risk PCa systemically for possible microscopic mets . Started with Firmagon injections 2 weeks ago but will switch to Orgovyx tablets . I will also take Xytiga and prednisone . Radiologist ruled out brachytherapy due to “probable” lymph node involvement shown in MRI. The doctors said they are treating me with curative intent .
I have hot flashes everyday but feel pretty good otherwise. The biggest shock is $ 900 dollar monthly co-pays for the ADT drugs . Does anyone have suggestions for how to get the drugs ? Thanks, Farlow
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Mine bounces between 227 and 295, the biggest expense is the xgeva at 469 dollars a month, I have the AARP united Healthcare advantage. I use genetic always if possible.
The generic is co- pay 300 with my United Healthcare Medicare Advantage
Welcome Pb! I got a high cost self pay BCBS policy in 2015 when I had this problem . I payed so much in co pays and alt med the first two years that I went broke . I went on ssdi and Medicaid Medicare ..the poor mans route . I went into remission so after imrt and double adt I chopped the balls and dropped the lupron . I’m still on Tak- 700 stopping adrenal t production . My first shot was firmagon too . Then on to Lupron . I think that all cancer treatments should be free . The money is in treatments not the cure . BCBS payed close to $900 k for me those first two years . I was grateful that they did . Then I Could no longer afford it . I was 53 then and not financial secure enough . Once BCBS didn’t get our payment . I went to get my Lupron shot and they said self pay would be $7500 ! Thankfully we got it straightened out . But paying $900 for the rest of your life is BS . IMO it sucks . Scott
I can imagine how stressful that was . I’ve been financially insecure plenty in my life . Fortunately things improved in the last ten years but 900 bucks for 2 years is a burger buster to say the least
Stick with Lupron injections instead of Orgovyx pills- injections in the hospital are covered by Part B. And as long as you have a Medigap plan, it's all covered. Abiraterone is available as a generic for $250/month.
Thanks . I was thinking Orgovyx because I have some cardiac issues . Had a TIA 10 yrs ago. , 930 calcium test score recently and hypertension (pretty well controlled by meds . )
That's a large calcium score. What are you taking? I hope you're on a ornish diet...if not, you might want to consider that while undergoing treatment.
I need to be on low glycemic diet for my type 2 diabetes . I’ve read the triglycerides can go up on Ornish . I’m not afraid of healthy fat . My naturopath says I need low glycemic plant based diet because all animal products including fish raise homocysteine( which affects the calcification) . Does Ornish stop the calcification ?
Whole grains, legumes, stc are low glycemic. Also, eating plenty of leafy greens will help control the homocysteine even if you eat meat. Im sure your naturopath explained that. No?
Why switch from Firmagon to Lupron? I thought they basically did the same thing with the exception that Lupron causes a testosteronr "flare" and Firmagon doesn't. Thanks.
Because Firmagon is a monthly shot and Lupron is a more convenient multi-month shot. The Firmagon was just used to get you past the flare that you would have gotten had you started with Lupron.
I am at 2 years for the same plan and dx but higher PSA. Just stopped ADT to see if curative intent was in fact curative. I was on Lupron , Zytiga and Pred. 44 sessions RT. Had basic insurance with no copays. Reached max payout very early 2020 due to RT and midyear 2021 so can't comment on issue with copay.
I hope the stop of ADT goes well. What was your monthly out of pocket for Xytiga? I want to do orgovyx because i read it’s easier on the heart . I have a very high calcium test score( 930) and hypertension controlled by meds . I also have type 2 diabetes controlled by Metformin and low carb diet . Copay for orgovyx is 500
In the beginning of 2020 and 2021 it was in the $300s and after a few months $0. I changed insurance this year so $40 per month. This is private insurance not medicare. I have no other medical issues so went with what they offered as far as Lupron and had no issues other than a large drop in lymphocytes at the beginning of RT. They took me off zytiga for a little more than a month. When I restarted it was at 750mg and stayed on that until I stopped 10/16/21.
I just read your profile card plan to mimic your presentation of the important info . I also have a special place in my heart for the Serenity Prayer from my recovery program
Thanks for your comment . I was mistaken . My 85 cc prostate and the fact that I was on Avodart ( dutasteride) for many years had the RO thinking that my prostate won’t shrink enough from ADT to allow SBRT . He did say we could do another MRI down the road to reassess .
PBI co-pay $366/mo for Zytiga thru CVS Specialty. I just saw that thru Publix (Grocery/Pharmacty) I can get it for $260 (saving $106/mo). I have Medicare & United Healthcare. Remember Zytiga is now offered generically.Mike
No . Gleason 6 biopsy at age 59 in 2009 . Johns Hopkins wouldnt accept me into their active surveillance program back then even though I fit the parameters ( Gleason 6 , T 1 c , PSA < 10 , no more than one stick of 12 with < 50% cancer ). Avodart cut PSA from 8 to 4 . It gradually rose to 12 over ten years and then doubled in 2019 when I stopped Avodart for a month .I should have gone back to Hopkins then but I was in a kind of denial .
Are you not on Medicare? Go with a top tier Medicare Supplemental plan, not a highly marketed Advantage plan. Tiss the season to choose. Are you not on abiraterone with prednisone rather than Xanti which is generally not used with prednisone. Generic abiraterone rather than Zytiga will be much less expensive. And lower dosage, 250 or 500 mg taken once in the morning with a low or moderate fat breakfast such as yogurt works as well for many as the full 1,000 mg.
Injected or infused meds received in doctor’s office or infusion center generally have very low copays under Part B. While pills taken at home such as Orgovix or brand name Zytiga have very high copay. Stick with Firmagon injections rather than oral Orgovix.
Good luck. Very happy that your scans showed no mets outside of the pelvis!!! So you can go for the possible cure. Be committed, you only get one chance for that.
you don't need firmgon if you get your balls chopped off. i just did and waiting to see how much that cost.. it is covered by medicare as surgery so it should be covered at at least 80% and supplimental might cover more. my oncologist said i could abaterone one pill taken with food. a specific food with the right amount fat that the onc should research. this is done in India and other places several studies have been done to show it is as effective,
my firmagon was less than $100 (two office visits ekg injection including the drug was about $200 Euro) in Paris paid myself adraberone would probably be similarly cheap. we get royally ripped off by big pharma in the us. I found the recipe for making aderaberone acetate and it is not that difficult nor expensive to make 55 gallons that sells for maybe a billion dollars.
Like in Breaking Bad, make it better, make it blue. Turbo charge your Retirement Plan. 55 gal @ $1B is a healthy profit margin. Sell it at half price. Corner the Mkt🤑
I experienced the same thing. I found out that my insurance company (BC/BS) has a speciality pharmacy. Like you, I paid $900 out of pocket at the oncologist office, who submits the claim for the drug under my medical benefits plan. Under my Medical benefits I would pay 20% of the cost of the drug. But, under my prescription plan, I pay a $50 co-pay. When I found this out I had my oncologist fax the drug prescription to my speciality pharmacy. The drug is overnighted to me w/o additional cost. My wife can stick me under the skin, saving a trip to the oncologist office. Needles in the muscle, I would bring the drug to the oncologist office. I found that small facilities, versus the big ones like MD Andersen, frown upon this practice because their are not making any money on the drug. Good luck..
money.usnews.com/money/reti.... Every state has a state health insurance program “SHIP”. In Washington it’s called “SHIBA”. They are trained volunteers with access to a online prescription coverage program that can help you by comparing how different plans would pay for your actual prescriptions.
Have your Drs office/ pharmacy contact HeathWell Foundation, They supply grants through the Prostate Cancer - Medicare Access fund. The number is 800-675-8416
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PSMA PET / COMBIDEX MRI 
Looking for a second opinion, probably from Sloan-Kettering Medical Oncologist
Follow up after MO Visit and PSMA Pet
Plan after PSMA Scan
