Long story short, I'm on ADT & Xtandi and just retired this past summer. While employed I was fortunate enough to have no cost for this drug that my medical insurance was paying $13k/month for. When I retired I had a 3 month supply that'll take me through mid-November. But when I have refill it this month under original Medicare (with supplement and Part D drug plan) the co-pay is $3,300 for the first month (gets me to mid-December) and then about $1,000 for the next refill. Then because we are into a new calendar year, the next refill in January is $3,300. Thanks to the provisions of the Inflation Protection Act, the rest of the year will not cost anything...and starting in 2025 there will be a out of pocket cap of $2,000/year for drugs. So, in span of 6 weeks I'd have a $7,600 of cost associated with Xtandi.
Abiraterone on the other hand is $250/month so I'm planning to suggest to my MO that I switch to that drug for two months to get me into 2024 and then back to Xtandi come January. Not sure how receptive he'll be to that strategy. Any thoughts out there on shifting from Xtandi and back over the course of a few months?
Written by
shueswim
To view profiles and participate in discussions please or .
Have u considered a reduce dosage to get you thru? 80 v 160mg. I think the 2 month switch to Abiraterone with Prednisone is too difficult considering you'll need to wean off Prednisone
I brought that up in September at my last MO appointment in anticipation of running out - I would have needed to reduce the dosage well in advance for that to work. He was very much opposed to going that route. Alternately he mentioned that he could get Xtandi samples to cover the gap into 2024...but when I checked back last week, his office said that they were not successful in getting the samples.
Consider sending your question as a "Medical Question" for the Doctor through the patient portal. The request may go directly to the Doctor.
If you do go on abiraterone, consider using Cost Plus Drugs. 90 tablets $90.50. This only makes sense if you will not be meeting the out of pocket cost for drugs.
I think the bigger risk is that you start training your cancer mutate around abiraterone, and then if you need it later, it won't work for long. Once you start a treatment you stick with it until it doesn't work anymore.
This is probably redundant but Janssen (maker of Erleada) has an Rx discount program. I got on it in part because I have insurance through work. See if you can get that. If I'm not mistaken it's free copays.
A lot of drug companies have Rx discount programs that are only available to those who have commercial health insurance. When I was working I always checked and was surprised to see how prevalent these programs to cover co-pays are. But...I've never seen one that is applicable to those on Medicare with part D drug coverage.
While everyone agrees that drug prices are too high, the notion that the federal government could coerce a private company is unconscionable, considering the US Constitution protecting intellectual property rights. Besides, under what authority would the executive branch act, without congressional approval via legislation?
Moo, the US government _paid_ ASTELLAS PHARMA (a Japanese company) with our dollars for Xtandi's development while they are charging four to five times more here than in other countries. You have it backwards.
They provided grants to "discover" the drug. One of many. It certainly didn't cover the clinical trials and they (Pfizer and Astellas) paid billions of dollars to obtain the rights.
Moo and Terminal, my post certainly skipped some money trail steps etc. Were either of you IRL by any chance a lawyer or professor? One of the very humbling things about having APCa is running into many other cancer patients from all walks of life, in many cases with far worse issues. Having to front $4000 for donut hole meds forces many to empty savings, take on extra mortgages, etc. Having it run $8000 between the end of one year and the beginning of the next is a disaster. And it can be a double disaster for even middle class folks where both spouses have complex chronic medical situations.
I encountered the hole when I started on abi. At first I used a pharmacy that billed medicare $13K/month for a drug that costs about $100 as a generic. Then the fvcking pharmacy had the gall to ship generic abi. I caught on and from the 3rd month on went with an online cash-only at-cost pharmacy, scripto.com.
My MO assured me there was no reason in the slightest to worry about drug companies making money. Are you defending the chain of hands involved with Xtandi? Thats a waste of time.
Thanks, I looked into that and there are many cautionary tales on the internet about drugs purchased from India. Who knows, these stories may or may not be legitimate but when I see the prices on IndiaMart range from $250/mo. to $2k/mo. for the same drug (generic Xtandi) I get suspicious. In theory this is a great way to save money since Xtandi has no patent protection in India but at this point I'm not willing to take the risk. I'd be more inclined to purchase from Canada. When I research enzalutamide at Canadian sources, they show the drug (manufactured in India) available for $2k/mo. Again that makes me very suspicious of the other manufacturers in India that will sell it for $250/mo.
Hello I want tell you about a tablet it’s used for killing Parasites in Horses etc it’s name is FenBendazole it’s normally sold under the name FenBen it’s 222mg in strength but it is also Anti- Cancer I have been taking it for 15 days & my prostate is shrinking & pain in groin is going away, the other things it’s achieved is taking the swelling in my Stomach & left Ankle down to normal size so all in all it’s something you should consider taking yourself as it’s relatively cheap around £40 to £60 for x60 tablets or capsules it works by helping your immune system to get stronger & I can actually feel it travelling through my prostate & into my legs as I have progressive nylopathy of the spinal cord since 1994 but FenBen is a game changer for your health, also do some research on FenBen & cancer
Fenben was a popular topic on the group several years ago. A number of guys here….. out of options …. as a last resort …. took it . All desperate and clutching at straws. One much loved group member , great John , especially. Not One Single guy reported “ any “ benefit at all out of what became a couple dozen over time …and ALL are dead now. this was especially distressing because great John was a much loved bigger than life personality here . Frankly mentioning fenben leaves a sour taste in the mouths of many here that have been through our own mini trials of desperation. This isn’t “ doing your research “,, this is first hand , real life examples about what became a drug of worthless reputation here. Fenben is just one straw of many , that dead members clutched at on their way out. This might not be the best place to recommend that veterinarian medicine home cure.
I have taken on board what you have said regarding FenBen all I can say is it’s helping me personally but I also take it with Turmeric & zinc & cbd oil & Black Fermented Garlic which boosts my immune system but everyone responds differently to certain medications but I prefer natural remedies every time
I’ve been on xtandi now since 2016. My co pay is $5k then $760 a month. Hard to swallow but I’m still alive , not sure if it’s the xtandi or the adt every 28 days. I think I would have to talk to the oncologist about your plan. 60 days doesn’t sound like much but if the cancer runs free for 60 days it could be a lifetime for you. Just saying 🙏
YES! this worked for me 14 months ago. I just turned 69. I still have not retired. when I turned in the application, thru my OC, his nurse said that a rep from Xtandi would call me in a few days for an interview, got the call 10 minutes later... questions were,
do you own your home? Yes
what is your annual income? 180K a year
what is your address? gave him my address.
Congratulations sir, you qualify, you will receive your 30 day supply via overnight Fed-ex. ... thank you.
Yes, original medicare with a part B supplement AND a part D drug plan. Xtandi retails for about $13,000/mo...the part D drug plan is what brings the cost down to $3,300.
Do you know if the medicare advantage plan provide drug benefits equal to the Part D drug plans? Should we advise medicare patients to get apart D and not Medicare Advsntage.?
I would always advise people to go the route of original Medicare with a part B supplement (plan F or G depending on when you were born) and part D drug plan...if they can afford it. Typically the advantage plans do not have a monthly premium (though you do have to pay the part B premium to Medicare) and do have various other incentives (some degree of drug coverage, perhaps dental, hearing, etc.). Those incentives are very appealing to many but...the trade-off is that you are essentially in a HMO and therefore restricted to providers participating in your network. You also need referrals to see specialists within that network. There are also co-pays that negate all or part of the savings from not have a supplement premium. As a cancer patient I want the ability go anywhere and see any doctor (that accepts Medicare) - and I want to do so without needing a referral.
We have been on a health advantage PPO for years and we do pay a monthly premium and can go to every hospital in Nashville TN plus I went to an ER in FL twice on vacation and no problem at all. My husband has gone to every doctor for his aggressive prostate cancer that he has wanted to since 2016 as we do not need referrals to see any specialist. He did receive a PAN grant the past two years for Orgovyx for our co-pay and he just went on Abi this month and the specialists where he went got authorization where we pay zero through BCBS. His PSMA scan we only had a $200 co-pay. He had a dangerous brain bleed in 2014, had surgery (tells the kids at church the holes in his head is where they took his horns out!), was in and out of two ICU's and several private rooms for a stay of 12 days and our total out-of-pocket payment was $862. We have qualified for assistance through the PAN foundation maybe because we are on a fixed income, but we pay a monthly premium with BCBS of $107 plus our Medicare bill $164.90 each. Of course Medicare goes up in 2024. I understand not everyone can or wants to pay out that much for insurance, but he has had so many hospitalizations over the years and he always believed having every kind of insurance was worth the cost. Our premium with our health advantage plan has not gone up in three years but coverage continues to be excellent and improved. He was in IT with AIG for 40 years but had to take insurance classes so we have never been on an HMO when we both were employed or since retirement. What we decided to do is not for everyone and it shouldn't be, which is why there are options depending on where you live. I simply wanted to state not all Health Advantage Plans are HMO's. Regular Medicare is good of course and I would never discourage anyone from choosing that option if they find it is their best option. And I'm not endorsing any particular plan over any other. I simply feel people need to do their own diligent research as it can vary from place to place depending on what is available where you live. I read this forum daily, and the information and encouragement each of you share has been a saving grace. The doctors we see are glad to know my sweet hubby has someone who tries to learn all she can to ask intelligent questions and to understand we are at any given point in this complex journey of advanced prostate cancer. God bless you shueswim and each one on this journey no one ever wants to take...
"The XTANDI Patient Savings Program* is for eligible patients who have commercial prescription insurance (through their job or purchased on their own)."
When I had insurance through my employer, this program covered the co-pay. It is indeed very easy to qualify for. But...once you are on Medicare (with Part D drug coverage) this assistance is no longer available. They do have another program that is not easy to qualify for - you have to be below the poverty line. I am not, but I'd certainly encourage anyone out there who is to apply.
BTW, there is also the PAN Foundation that theoretically provides aid based on need. I say theoretically because I applied and qualified...but no money was available. Even if you qualify, they apportion what limited funds they have based on severity of need - as they should.
And...I for one am happy to benefit from the anti inflation act. Removing the phase 4 (catastrophic) payments in '24 and capping out of pocket drug costs at $2k/yr in '25 is long overdue for people who have been prescribed these very expensive drugs.
That was the cut-off for the PAN Foundation. But the assistance from the drug company itself was much lower. BTW, as I mentioned in an earlier reply, it's one thing to qualify for a PAN Foundation grant (I did), it's another to get a grant because they have limited funds and disperse them according to greatest need...so despite the higher cutoff for qualifying the effective cutoff is much lower.
Great! As I said the drug company has two programs:
1) The XTANDI Patient Savings Program - that does NOT apply to anyone on Medicare.
2) For those on Medicare you can call "XTANDI Support Solutions" at 1-855-8XTANDI (1-855-898-2634). It's a 3rd party that qualify's individuals based upon financial need. I called and did not qualify, but I'd encourage anyone to try that route.
EdBar, then how did you qualify? My husband WAS employed, and Xtandi was covered through their program. He retired, and now he doesn’t qualify. We are above the poverty line also. What am I missing?
I am disabled since my Stage 4 diagnosis it’s possible that has something to do with it. The form for patient assistance is pretty brief and I only answered questions asked.
1 - For those with a part D drug plan, in 2023 the effective out of pocket maximum for drugs is about $3,300. In 2024 that number is $2,000.
2 - Try applying for a PAN Foundation Grant. Not sure what their exact cutoff is but I believe its roughly 5x the poverty limit. I know of men getting the $3,300 grant to cover the full 2023 out of pocket amount with current annualized income of $95k. The PAN Foundation distributes the funds that it has and then places you on a waitlist if they run out. Many more awards were available this years because of the new effective $3,300 cap.
I got assistance for Xtandi at first thru financial aid at Yale dealing directly with Astellis. They foot the whole bill. Then, I applied to TAF( the assistance fund) and got accepted into that program. Reenroll late Nov for 2024. They pay what you’re insurance doesn’t cover. In my case, that was 3300/mo. I get my Rx delivered from Yale Specialty pharmacy. Good luck and god bless.
I actually like your abiraterone idea. It is not hard to taper prednisone and your adrenal gland will bounce back quickly from it after only 3 or 4 months. Only caution is that you almost certainly will develop hypertension.
I moved from 160mg to 80mg per day 2.5 years ago. I've been on Xtandi for 3.5 years total and remain undetectable on the half dose. Also on 3 mo Lupron shot (praise god) . I've seen studies on this site that showed there may be advantages to the lower dose. My MO was fine with it. My feelings less drugs in my system the better as long as it still works! I'm not suggesting anyone do the same! Just saying it seems to be working for me.
Within the next two months MedBeds will be available worldwide if you have not seen one I’m sending a link to a facebook page where you can view the Medbed they can cure all known diseases they will be available in every country soon
maybe you should check out a new Medicare provider. I work currently and have no out of pocket expense. When I retire next year I will only have to pay $53 with my Advantage Plan.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Xtandi
Xtandi
Helping pay for Xtandi
xtandi 
