Hi,
I just had radical prostatectomy 3/23. I was diagnosed with prostate cancer with EPE. I started on Firmagon and my doctor ordered Xtandi. My question is …how can anyone afford Xtandi? My copay is 3300 dollars, more than my SS check. I’m checking with my MD to see if I can wait until Jan. ( to get better insurance) to begin Xtandi. Anyone have any input?
Abiraterone would be the choice here. Its generic for Zytiga, and a whole lot cheaper.
PSA dropped to .042. Pretty good for just Firmagon, what's your testosterone level?
Has salvage radiation been brought up?
Yes- I start salvage radiation in Oct. I’m hoping my insurance pays for that …..
So not very long ago Zytiga became available as generic. Prior to that Zytiga was the clear choice for first 2nd level ADT. Then presto everyone now were getting prescribed Xtandi overnight.
It was well documented before the generic became available that you should go on Zytiga FIRST and then later Xtandi when Zytiga began to fail. It also was well documented that if you went on Xtandi first, Zytiga would then not work for you. Perhaps a few months but no longevity. Going on Xtandi first was inferior to going on Zytiga first.
I would not go on Xtandi before Zytiga, the only thing that changed with these two drugs was that the big pharma wasn't making a killing of Zytiga anymore. Medical professionals and their hospitals were not making as much off prescribing these generics.
So also there have been a few other equivalent drugs which are from other pharma companies that have been approved recently. Which basically restarts the clock and keeps the money flow alive.
I am a bit shocked that Tall_Allen is not pointing out what happened when Zytiga went generic, cost dropped to a tiny fraction.
Now that Zytiga is generic and the ability to profit hansomly is gone Zytiga won't be involved in future clinical trials, and way further down the line other new processes or drugs might require a different precursor drug.
Same words from my MO, Zytiga till it fails, then XTandi.
look at forms of $$ assistance based on income. Also read up on how the law is changing in 2024, 2025 and beyond. There will now finally be out of pocket limit on part D drug costs. Also a way to spread those costs out over entire year. Don’t let the first month cost scare you into thinking this is monthly for the entire year.
Try buying it from India.
Is that legal? How much can I save ?
Seems to be legal, at least outside of USA. But not sure if it is same as the real thing.
Dont mind me. I am just a layman trying to make some sense like most people.😊
Technically I don't think it is illegal. Use your browser to search IndiaMart. Search for prostate cancer. Stick to US brand names.
Thank you
Check with the manufacturer and on their website they often have special programs with financial assistance
Hi- yes … I’m hoping
we ran into the same financial hurdle. The manufacturer is paying for Xtandi for one year at no cost. Then after 3 weeks he had to go off of it, side effects were bad for him.
Hi - yes , I’m trying with the drug company
Pharma company is paying for my xtandi. My MO's financial social worker, checked into it for me and did all the paperwork for me. I am not on SS or Medicare yet and it gets reviewed every year. I am on my second year of xtandi. I am 1-1/2 years away from Medicare. Not sure what will happen then. I am no expert, just my experience so far. Thanks.
Keith
Just matter of interest what does your doc say about continuing medication when the PSA is about the same as surgery? Dont have to answer if that is inconvenient.
Dont mind me. I am just a layman trying to understanding the whole like most others.😊
Don’t understand you’re question
Not sure which surgery you are asking about. Taking out or radiation to the prostate is not really an option. I have extensive bone mets. The only other surgery would be taking out the testicles. (We talked about it before xtandi, but he thought I should still take it and drop lupron.) My PSA is way down, undectable (<0.01) which I am very grateful. Does this answer your question?
Keith
It seems that Xtandi did the works, ie bring the PSA down to <0.01. That is as good as RP, which is classified as 'cure' at one time. Just wondering what you doctor says .
Any side effects ? What dose? Was it metastatic ?
We are talking at cross purposes. The question is addressed to JD. It seems his doc uses Xtandi which reduces the PSA to <0.01. That is about the level previously achieved by surgery or radiation only. It is considered a 'cure'. Where as hormone treatment is only considered keeping the disease under control. So the question is what does the doctor say? It seems over the years, the line between cure and remission is somewhat blurred.
There is currently a study underway which looks at those who achieve PSA<0.2 over 80 to 24 months. Of course, it will take many years before we have any result. In the meantime, it is interesting to see what are the doctors operience and opinion?
I was on it and hated Xtandi as much as it hated me. PSA kept dropping after stopping and only on Lupron. Felt like a kid again after that nightmare drug (for me). Added Abiraterone a week and a half ago and hoping I tolerate it as well as I did the first 2 years. So far so good.
Hi - Can u tell me what side effects u suffered ?
Pretty much all that are listed in the literature to varying degrees. Mild depression, gynocomestia, insomnia, degrading eyesight, lack of appetite (not necessarily a bad thing) constipation. I am trying to remember the list but its longer than above. Seems like I had all of them. Just glad to be off it for now. Keep in mind we are all different as far as drug tolerances. Your mileage may vary and you might not experience any of the SE's.
Nasty side effects
Of the drugs I have taken this is the only one I would say that about. It was my first real QOL issue since dx. Though I expect to have worse issues in the future nothing until now was even close.
I've only been on Xtandi (and Firmagon) for three months. So, I'm not sure what side effects I might have eventually, but so far nothing but some very mild hot flashes, and I'm not sure which drug that is from. As everyone says, YMMV.
Hi- yes , I’m in a fixed budget and have Medicare advantage thru Aetna . I’ve applied for assistance with the drug company , but have yet to hear back.
Hi,
I was in the same situation. There is a process. Since you’re insurance will pay for Xtandi, but leave you with a giant copay ( mine was 4700/mo). You should be working with a financial aid person at the institution where you are getting treatment. For me , it was Yale in New Haven. That financial aid person will contact the drug company telling them you cannot afford the copay . The drug company will then call you. They will ask u to refuse the prescription being filled at you’re pharmacy due to financial reasons . Once you refuse the Rx for financial reasons , the drug company will enroll you in a program where you will receive the drug thru the end of the year … at no cost . This whole process takes a few weeks. It’s important to know that you must reapply for assistance prolly in Nov , or early Dec as they only cover u until years end.
There is also TAF - which is a copay assistance program . Place you’re name on the waitlist . Easy process. I got an email just yesterday , and they accepted me on their program . I had to turn it down bc they only assist until the end of the year as well. So , be patient ..but be you’re own advocate. I hope this helps
My dad receives his for free from Estella . It's a very easy process that his oncologist initiated. Side effects have been typical of hormone therapy for my dad... Not pleasant, but bearable.
They have a patient assistance program that is pretty easy to qualify for, you won’t pay anything. Look on their website for information or call customer service.
Ed
I Purchased mine from India and very reasonable cost. There can be a delay in shipping and customs as to side effects. I would suggest that with consultation with your physician you may want to start the lowest dose and see what your labs are in my case a single 40 mg capsule was exceptionally effective. And the walls you to make the four capsule per day prescription last much longer does lowering your cost
Why would you say that?
very interesting i gad never thought of trying every other day or every few days. This works with sone psych meds. I started bicalutemide at just 50 mg once a day ghen switched to enzalutemide hoping to have fewer side effects
Free Zytiga and Xtandi
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Hypertension and Xtandi 
Xtandi and leg/foot swelling?
