I have refractory metastatic PC. I have been on hormone therapy for nine months. My testosterone is low but my PSA rises every month. My MO wants to Rx Xtandi (Enzalutamide). My part D Medicare supplement says it will cost $2400 the first month, and $600+ every month thereafter. I still work and have an income, but that cost is shocking. I would like to hear about financial assistance others have received in my situation.
Xtandi cost: I have refractory... - Advanced Prostate...
Xtandi cost
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xpbdb
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Have you tried Bicalutamide (casodex) which is also a AR receptor inhibitor just like Extandi,
Bicalutamide costs from $50 to $70 per month and with insurance it might cost you $10 a month.
Its worth trying if you have not tried it in the past ...discuss with your MO.
I mentioned that to my MO. Casodex is old school. About 50% as effective as Xtandi. I want to slow down, stop or kill my cancer, and as fast as possible. I should have mentioned that in my post. Thanks.
If casodex fails you can still move on to xtandi. I was on casodex for 5 years and both zytiga and xtandi were still effective later on.
Thanks. My cancer grew for 9 months while I tried "unsuccessfully" hormone therapy. I have had PC for 8 years and it has overcome every treatment attempt. I don't have the patience for that anymore.
Xtandi is not a ticket to no failure. I failed it after 15 months,,,however now on Casodex that for now is working.
Research very carefully donut hole rules on !medicare part D. Your medical professionals or pharmacy will likely be worthless in giving this advice below Like the IRS, they are here to help lol
Basically you hit and must pay your maximum out of pocket, about 4,000 dollars once each year. One month on Xtandi you will hit that.
Let’s say you start Xtandi or any excessively expensive drug in November. You will pay the thru the nose donut hole.
Come January you will immediately pay again. Congress in their normal stupidity,,,I am being kind and not asserting that they would do this deliberately,, did the inane donut hole business on a calendar year,,,,which means if you begin Xtandi in November 2019 you pay the 4 grand, if still on it in January 2020, you pay again.
If you need Xtandi right now,,try Casodex until January 2020 and if you still want Xtandi,,,sign up for it then.
Too bad you are not eligible for Darolutimide as you are metastatic. Appears a substantially better anti androgen drug.
I would spend some effort with your MO to find somehow to obtain it.
Sorry when you are down so far and up to your butt in alligators, you have to deal with this nonsense too.
Hi, Really interested in what you are saying. Husband just off Xtandi after 16 mos worked for him. So you are having success with Bicalutimide after Xtandi? That would be great for him to retry as he had no side effects with bicalutimide. What dose are you using?
Started with 150mg daily. Fatigue as with Xtandi,,,when still on it,,was intense. Have now cut back to 50mg daily. Fatigue has lessened. PSa test scheduled for coming Wednesday, will help determine if cutback has slowed fall in PSa.
Jury still out just why Casodex has been very successful after failure of Xtandi, Lupron, cabazitaxol.
On my own against recommendation of two MO’s, I chose to go on indomethacin, Avodart, and Casodex simultaneously. Six weeks later,,,knock on wood,,,PSA fall has been remarkable. Uncertain of what is working.
What I know is what was not,,,SOC, including Cabazitaxol where PSADT was at 5 weeks prior to this experiment.
Have appointment next week with Dr. Lam,,,Prostate Oncology,,,will be LA for PCRI,,,with many imponderables to query him on.
Just read results of European small 3 year trial of 67 men on Monotherapy Xtandi,,,no ADT. I myself made this choice myself 2 Years ago. Worked great for 15 months for metastatic disease.
Thank you. I think we may have given up too soon on Casodex. His next try might be Cabazitaxel, then Casodex.
Here's a report of a clinical trial comparing enzalutamide (aka Xtandi) and bicalutamide (aka Casodex): thelancet.com/pdfs/journals...
Xtandi is more effective that it also has somewhat worse side effects.
Alan
Xtandi was denied a patent in India (where the average prostate cancer patient makes $4/day), so generic drugs are available there. Search Google for (enzalutamide cost india) to get some prices.
Unfortunately, that may not help since Medicare is not going to pay for drugs from India and the price without insurance may be higher than the the U.S. price with insurance.
Drug prices in the U.S. are out of sight.
Alan
Thank you. I will check it out. Your clinical trial response validates my feelings. Xtandi is more effective than Casodex. Side effects? Hot flashes are already a part of my daily life. I'm not stopping Firmagon.
Thank goodness, the Indian Govt did not allow Xtandi to be patented in India at a rip-off price of INR 335,000/- (for 28x4 tablets) thereby preventing generic companies from making the same thing at a fraction of the price.
I have metastasized prostate cancer bone and some lymph nodes presently under radiation treatments. I was prescribed Zytiga, Not taking due to price of appx $28k/yr with Insurance.
I did check pricing from India, seems to be around $450/mo. Not sure if Real Zytiga. Our USA system is terrible, filled with greed.
Hello carbide,
I found a Jannsen Pharmaceuticals web page on getting help for paying for Zytiga. It looks like it may be a public relations scam - working in such a way that nobody who really needs help will get it but, for whatever it's worth, you may want to contact them. See: janssencarepath.com/patient... You could also try Medicaid but there are income limits on who can qualify, and there are a surprising number of states who don't offer Medicaid, even when it's the Federal government that pays. Google will tell you a lot about that.
As far as Indian pharmaceuticals are concerned my wife and I have used them for a couple of prescriptions (not abiraterone acetate) and the drugs seemed to work the same as the ones sold in USA brands. You might post a message on this group asking if anyone is buying generic Zytiga from foreign sources, what did they pay, and did the drugs perform as expected.
Personally, I wouldn't be surprised if some of the American pharmaceutical companies actually buy either their drugs, or the raw materials for their drugs, from India and China.
Best of luck.
Alan
With the year ending and time to sign up for new insurance. Do you have another option that would have better benefit. I have anthem/blue cross. And paying less than$100 for Zytiga. Deductible I have is $4K that was used up very quickly early this year
I will be checking all insurance companies selling Part D. Now have BC/BS Advantage Plan in Arizona.
Aynoy, are you on Medicare?
How can you pay $100 (after the $4k deductible) and my BC/BS is saying like $26k yr! I never got a firm price from anyone.
Thx for your reply.
What is the cash price? On my plan that would indicate $12,000 per month. 5% after the coverage gap is taken care of. That is called catostrophic coverage with Aetna.
Also is a generic available?
I found Zytiga at Costco for $3109 which is $159 instead of $441.
The mfg. cost is $12,357. My insurance is Humana Walmart, and I would pay $2439 the first month and then $619/month thereafter. Yes it is significantly lower, but still outrageous. When I try and look into patient assistance programs, when I say I am on Medicare they say I am not eligible. I guess if I just snuck across the border they would cover me. Pardon my cynicism. No generic for Enzalutamide.
Of course, we have a generic version of Enzalutamide in Bombay, India.
It costs approx INR 50,000 for a months supply. That is approx US$ 715/month.
One could get it even cheaper if one looks around. I will be buying my Enza at roughly the price I mentioned above.
My MO gives me a name and telephone number, I contact the person and the tablets are delivered to my home in a couple of days. Payment by cheque. Everything above board.
I DO NOT KNOW how Americans or others can get this from India, so please do not ask me 
Cheers Everyone !!!
I feel the sameway, as very poor or illeagle can get, but I a citizen has to pay huge money.
Hi xpbdb,
It seems cheap Enzalutamide is nowhere to be found in India or USA.
but here in Australia, our Medicare pays the full cost for genuine Xtandi, its not generic. There is a minor $6.30 fee at the chemist. I'm also on Lucrin for ADT, also $6.30 a month.
Our nation's ppl pay very low medical costs, and this prevents us becoming similar to USA where doctors charge such high fees it would be impossible to have our Medicare system implemented in USA. we also have medical insurance companies for where the only treatment is available from "private" hospitals or for non Medicare approved items, like Lu177.
But I bet insurance won't pay for Lu177 because its not yet fully approved here.
So my 4 x Lu177 shots plus all 6 x PsMa scan so far have cost at usd $30,000 but much of my other RT treatment plus all the consultations with docs was paid for by Medicare. The insurance companies would not insure me when I got too old, and they don't pay all the bills, and so they only want money paid in over a lifetime to make huge profits. So I have never been insured, and I've paid for private hospital treatments from savings. But Medicare paid about 45% of the medical costs. I have not helped insurance companies grow rich. So everyone MUST save for later in their life when they will need to spend up to stay alive.
I do not know what the situation is in UK or Europe. But in USA it seems the idea of Medicare like ours is repulsive Communism, or Socialism, where ppl hate paying a cent for anyone else's welfare. So what happens when someone who hates Socialism gets sick and hates paying the bills? Here, we came to a decision that it is best to socialise health expenses because everyone benefits, even the rich who hate Socialism. The rich hate taxes, or paying for anything, they just want money, that's what they want, money is what they want. Very often the rich fund politicians to make sure the poor cannot steal their money. Its all that simple. Haves and have nots.
I met a man during my time doing chemo which was totally free at the local Govt public Hospital, and he was not getting a benefit to reduce his Pca, but he was too poor to even think of buying Lu177. His wife had left him as soon as he was diagnosed. Maybe she could not care for him, or pay any of his medical expenses.
I would assume most ppl here can fund all the treatments being discussed, but there are many who would not post here and they cannot fund anything being discussed, so they just get sick and die fast.
But on the brighter side, its a very nice sunny day here, and I'll venture out on bicycle for a small ride and loiter about listening to live jazz in the city, and get a chance to sit in sun and have a coffee.
Patrick Turner.
Enjoy the day...and the jazz...
Good Luck, Good Health and Good Humor
j-o-h-n Monday 09/02/2019 11:43 AM DST - Pinnes
I first cycled to the Lake Burley Griffin where a skilled carilist was to play the bells at a carillion beside the water. But he'd just finished when I got there, so I cycled to the Jazz, not bad for an hour. Good little scene when there is no classical music on. Truly wonderful weather right now, and am happy to be alive.
Patrick Turner.
"happy to be alive".
That's the spirit mate....
Good Luck, Good Health and Good Humor
j-o-h-n Tuesday 09/03/2019 10:41 AM DST - Pinnes
Hello,
"Sneaking across the border"? Those of us who live in Canada are seriously considering building a wall.... : )
Well that was a mild response to what I was expecting ☺
Funny, funny. That is all I can say. Don't want to end up in Guantanamo.
A wall?....You all would probably find a way over it anyway.....
Good Luck, Good Health and Good Humor
j-o-h-n Monday 09/02/2019 11:47 AM DST - Pinnes
Check our the Patient Access Network (PAN). They cover Medicare copays for Xtandi and Zytiga if your income is within certain boundaries determined by number of dependents. Check out their webpage for more info. They may not be accepting new applications right now but they reopen the metastatic prostate program a number of times during the year. They allow 5x the US poverty rate income which for a husband and wife comes out to around $80k per year.
I was going to suggest the same thing, PANF!
They have helped me GREATLY with my Xtandi!
A GOD SEND!!!
I am just over the 500% of poverty level threshold. Out of luck🤪
I was faced with an even more impossible situation and had to either die or buy a box of Xtandi with my own money. Good choice. But then I figured I should do some experimenting to see if I could make that box s-t-r-e-t-c-h as there could not be another box for a long time. It turns out that Xtandi in small quantities increases the kill rate of Vit C via IV via another mechanism. For a while (with Lupron) I was on 25g Vit C and just ONE Xtandi capsule per week - and PSA <0.1 with zero side effects. The more C and/or Xtandi, the bigger the kill. Xtandi on its own does not kill - just slows. Now 21 months, but I do have to use 50g C at times and an extra capsule or 2 of Xtandi to keep that PSA down. Nothing good lasts in this game.
Frigataflyer• in reply to
David, what. Format for the Vit C? Liposomal, oral, IV?
• in reply toFrigataflyer
Liposomal never gets to a high enough level in the blood - I consider this a waste of money. I take 3 x 500mg a day Vit C as a general vitamin. I use weekly Sodium Ascorbate 25 grams in 400ml 0.9% Sodium Chloride + 900 Mg (or a little more in tablet form) Potassium to balance out all that Sodium.
In 2017 I sold a small business. In September, when I started Zytiga, my deductible was $2890.20 and $595.00/month till the end of the year. In 2018 I only collected social security and my wife work some. Income was $55K. The ladies from the supplying pharmacy found me two grants($12K, total). I pay ZERO out of pocket until March of 2019 for my Zytiga. Good luck to you! I had a big tumor(10x8x6cm.)on my rectum, besides cancer in my prostate, seminal vesicles, lymph node. I had a suspicious spot on my right lung(like a quarter). The Pet scan from a month ago did not pick up any cancer activity in my body and the MO told me that I was in partial remission 3-4 months prior to the scan. The big tumor was reduced to a thickening of the rectal wall and in my right lung I have some scar tissue, but no cancer.
This page has a phone number to call to look for assistance with xtandi
Here in Sweden one pay approximately 220 USD a year to get Xtandi and all other medication you might need (in my case for diabetes and Crohns illness.) You dont need any special insurance to get it, only requirement is being a Swedish citizen and living in Sweden.
I was diagnosed with major metastatic prostate cancer 2014 and have been taking Xtandi 2 1/2 years now.
I am 75 years, no pains, much activities, just lazy and sometimes a little weak.
Sweden is apparently the land of high taxes and high life!
I spend my pension on other things; like traveling to France the Sixth of June this year in order to take part in the celebrations that it was 75 years since you Americans spent lots of blood in order to reinstall civilisation and democracy I Europe.
You deserve a similar public medical care system and the same great lives we enjoy here in Sweden.
/Erik Andersson
kallebram@gmail.com
Thank you Erik. It was our honor to support our European brothers and sisters. Wish that honor was more in evidence today, but it does live. Semper Fi. (MateoBeach, former US Marine)
Thank you Erik, Yes a lot of blood was spilled on June 6, 1944 on the beaches in Normandy. God Bless all those service men who helped free Europe from the tyrany of the Nazi empire.
Drug costs: They get you either way High taxes or High prices.... We're fcuked either way..
Good Luck, Good Health and Good Humor
j-o-h-n Monday 09/02/2019 11:59 AM DST - Pinnes
See if you have grants available...also have your treating file your financials with the Drug maker...I have paid 0 dollars and been on it 9 months...when and if the grant runs out I will file for assistance..when evaluating you their formula it is a little different..My treating faculty does all of this for me...I hope this helps...and they explained what you are paying is the norm...depending on your Rx coverage you pay either more up front or monthly so do not feel you chose the wrong plan...someone else may have more info on that ,just what I was told....when they told me of the grant I stopped researching because what is the point as fast as things change...I still get the bill...a little over 12k a month...this has to stop at some point....I hope....( and politically that is as far as I will go)
Look for a Medicare Advantage program. I have Kaiser Medicare Advantage. Xtandi retail cost is $10,000 per month, my cost is $10 per month. No donut hole. Max out of pocket for any year for all care is $2000.
But you may no longer have a choice on the doc you want or need to see. Or you may find the Medicare Advantage plan will not approve recommended services for you. Those plans can look like a great deal but there are a lot of hidden traps. Caveat emptor.
That is so true. But if you are a pauper, could be a good choice. Those interested in Kaiser Advantage be aware, costs are different in different parts of USA. If you are below the poverty level, or you plus family are, google it. Their Medical Financial Assistance program is next to none. As whatsinaname once said: is best to be rich, or best to be poor. Enjoy.
Hi monte1111,
In India, you just gotta be RICH. If you are middle class, you are screwed badly. If you are poor, its just misery before you die.
Luck is very very important and in this respect, I got lucky
Cheers, monte1111 !!!
This is phone number for a India based pharmacy that I have found very helpful in the past. Paul is the person to speak to
+1 (321) 215-7670
This is a US number
xpbdb,
Just my 'two cents' worth! I also am a stage IV metastatic PCa warrior with similar stats. Recurrence after a robotic RP, 68Ga-PSMA scan identified five sacral lymph nodes, LN excision lowered PSA; however, it continued to rise, started applying E2 gel (only form of ADT) 16 months ago when PSA reached 0.71, last PSA was 0.014, only SE is gynecomastia, cost of gel is $30/month. Needless to say, I'm loving the stuff!
If you are interested you might want to contact Richard J. Wassersug, PhD...the tE2 guru.
Contact the maker directly. They have a program to assist you with the cost of meds. I have a good part d and to much income so my cost is a lot higher than that. My dad has cancer as well and on Social Security. We got his meds free from zytiga Johnson and Johnson makes it. Lots of paper work including tax return but worth it. Good luck with the monster 🙏🙏
I pay $3500 in January to cover my deductible, after that is is $100/month until I reach my out of pocket of $6000, so November and December are usually free. I have been on it since November of 2017, still working but PSA now at .99, will have to revisit if it keeps rising
If we vote Berni in and he is true to his promise with Dem help, you will pay nothing. Good luck my friend.
lol Bernie will not make it to the White house.
God Bless
I guess I opened a can of worms. 🙄 I will just take Casodex if I can't avoid the $10K (with Medicare part D) for Xtandi. I will probably take Casodex anyway untill 1/1/2020 when my benefit year starts over.
Don't you just wish Jon Stewart would run? 20 creeps running for president. No one with an ounce of brains will run for president any more. Nero is fiddling. The rise and fall of the American Empire may be swift and certain. Greed and corruption and I got mine. Give me my bonus. God bless all the service men who are standing watch. Semper fi.
My husband can not work, so quality of life is impacted. Gleason 8 with met to small area in back as well as lymph nodes. complications due to dvt in leg. We have insurance, it covers pretty well aside from some big co pays, because we have to meet our deductible every year. I just cut through the red tape by keeping good records of Dr. and hospital visits and contacted Morgan and Morgan lawyers. I also filled out the Social Security Disability paperwork online, and prayed. We were approved and now just take every day as it comes. I hope this helps a little.
You are in my prayers as well.🙏
On the chance you are a US Veteran, they will pay for everything.
Hello!! from where are you? for how long will you be taking Xtandi? I have a box of unuse Xtandi, and would love to give it half the market price....
Thanks but I am waiting to see if my insurance can find a grant for me.
I'm on Medicare and receive oncology treatment through our community hospital on the Oregon coast. They were able to work out a deal with the manufacture so I don't have to pay for Xtandi. I had to supply my last year's tax return to qualify. The deal ends in December and the hospital will try to negotiate a new one or find a grant to cover the cost if I'm still on it. Right now I'm not sure how well it's working. I've been taking it for 3 months, and while my PSA stopped going up, it's not going down.
I think you cap out at 5100$ but I’m not quite sure if it varies according to policy or if you are on Medicaid D. Most prescription policies have a cap.
Was just advised today, I will be getting Zytiga at no cost to me through Johnson & Johnson Patient Assistance Foundation. Long story dealing with a Specialty Pharmacy. This drug system is not easy to navigate.
I just wanted to share with you what I found for my Dad. He is on Xtandi. The Pan Foundation, and I'm sorry if someone else mentioned it already as I have not read the entire thread. You can google it and then on their alpha search look for prostate cancer. You will find right now, as I did when my Dad ran out of benefit before, that the fund is currently closed. It will then show you for current information, log into fundfinder. I did that for my Dad, and I registered for email updates for any fund that was or could be funding for prostate cancer. Through fundfinder, I got an email on 4/1/19 after signing up for the notifications 3/4/19 that when a fund reopened for applications, I wanted to be notified. This part is really IMPORTANT- I got that email at 12:01 p.m. that the fund was accepting applications, and before 12:05, Dad and I were on the phone to them. I don't know how many people they take each time, but my understanding is that if you qualify, as long as the funds are available, they will keep awarding. It is really important to JUMP on it right away when that fund opens up again as you never know how much they have or how many people are applying. My Dad has been SO grateful for the help. Prayers to you that you are able to find a fund also, and keep fighting this brave fight!
Lora
Got on the pan foundation. Paid for the donut hole and sme left on Zytiga thank god for them only Qualify barely
Sadly, Xtandi didn’t work for me after the first month .. I am headed to chemotherapy .. I do have an unopened sealed bottle of Xtandi (30day) that I already paid for .. my deductible was 10% or $1200
I am so sorry to hear the Xtandi didn’t work for you. I just posted that apparently it is working for me. My PSA dropped 90% one month in. I wish my cancer was gone, but for now I am okay with it “sleeping”. I know it will eventually find a way around the Xtandi, but am learning to live in the present and be grateful for what I have.
Blessings !
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