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We can't afford Xtandi for my dad

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Posted 1/25/2018 4:22 PM (GMT 0)
Hi all,

My father lives in Iran and price of 120 Extandi pills for 1 month is equal to 13 months of the family living costs. Means hiis retirement income is one thirteenth of the price.
I can support him for 1 or max 2 months with my savings but that is it.
He is overall in good and normal health. He was responding to chemo in 6 month, then the doctor stopped chemo and now wants to switch him on something we can't afford.
No insurance in Iran cover this medicine.
The issue is that we don't know why he doesn't want to retry chemo, when it decreased his PSA from 98 to 17 in 6 months and seemed that it was working.
Do you think we need to talk to another oncologist?
I feel so guilty about not being able to provide money for my father's crucial medication, this feeling is killing me as her daughter. My life looks like hell these days.

Please help and share your opinions. Thanks.

Post Edited (Farz53) : 1/25/2018 10:50:21 AM (GMT-7)

Posted 1/25/2018 5:22 PM (GMT 0)
An alternative to Xtandi is Zytiga. Your insurance in Iran may pay for that. Otherwise it will be available this year as a generic drug in the US. This should result in a lower price.

George
Posted 1/25/2018 5:41 PM (GMT 0)
Farz,
I am sorry to hear about your Father's situation. Over here there are sometimes people who can help with obtaining the medications. So I would talk to the Oncologist. Not sure if they are discontinuing the Chemo due to the duration or his lowered PSA. Please do not feel bad about yourself and the money issue, as most of us would have trouble paying out of pocket for Xtandi. More importantly you are doing your best to help your father.
Michael
Posted 1/25/2018 5:49 PM (GMT 0)
@George and Michael, thank you so much.
@George do you mean in 2018? That would be great, it brought tears in my eyes and made me feel a bit hopeful.
@Michael: thanks a lot. You know it is hard to think you may lose someone because of money. It break my heart. I try to stay optimist for him, though.
Posted 1/25/2018 6:05 PM (GMT 0)
Farz,

please click on the link "generic drug" in my post above. Then you will be able to read more details about this.

George
Posted 1/25/2018 6:31 PM (GMT 0)
George,

In my father's case the doctor says Zytiga won't work. So the generic form of Xtandi will not be available soon...
Posted 1/25/2018 7:35 PM (GMT 0)
Farz,

usually you can take either Zytiga or Xtandi. However, if your father had Zytiga already before his chemo, then it may not work now. You could try it but it probably will not work again.

If your father had no Zytiga yet, you should look for a different oncologist. Maybe the current doctor does not like the patient to question his advice.

George

Post Edited (George_) : 1/25/2018 12:39:25 PM (GMT-7)

Posted 1/25/2018 7:39 PM (GMT 0)
Geroge,

He never had Zytiga before. I do not know why the doctor first said Zytiga and then changed his mind without any explanation...
So overall Zytiga is cheaper, am I right?
Posted 1/25/2018 8:01 PM (GMT 0)
Currently the price of Zytiga is not much different to Xtandi as far as I know, but they expect generic versions of Zytiga to become available later this year.

I really do not know whether your insurance in Iran will pay for Zytiga now, but I would ask. It has been available for a longer time than Xtandi and so they may have decided to pay for that.

George
Posted 1/25/2018 9:25 PM (GMT 0)
If his doctor thinks it may be worth trying zytiga, he could try one pill a day with a low fat meal. Here is an article with details: /www.medscape.com/viewarticle/875946

In my husband's case, taking one pill a day didn't work nor did taking 4 pills a day on an empty stomach. He is currently taking 4 pills a day with a high fat meal and his psa has gone down for the last three months, so this dosage is working (so far).

Good luck to you and your dad. These new medications are ridiculously expensive and don't work for everyone.
Posted 1/25/2018 11:27 PM (GMT 0)
Have you checked with the drug manufacture? Sometimes they subsidize the cost for humanitarian purposes.
Posted 1/26/2018 12:04 AM (GMT 0)
Zytiga is only about 15% cheaper when I look at what my insurance company paid.

Unless the Zytiga stopped working, I can't see a medical reason they would not try it. Except that liver function problems would be potential show stoppers. Zytiga came very close to shutting my liver down from "working fine" in less than three months.
Posted 1/26/2018 1:12 AM (GMT 0)
A message via this Contact Us page, with subject Patient Assistance, Country Code = Iran, and a short but engaging message and plea for help might possibly get a referral to some additional source of help or financial relief for getting Xtandi (enzalutamide).

/www.pfizer.com/contact/email

Good Luck to You.

Charles
Posted 1/26/2018 6:13 AM (GMT 0)
Hi Farz,

Don't know the price of Xtandi in Iran but it could be cheaper in Turkey. The retail price of Xtandi 40 mg 112 capsules in Turkey is around $2,100 at the current exchange rate. There may be a price increase of 15% soon due to the depreciation of the local currency against the USD.
Posted 1/26/2018 2:11 PM (GMT 0)
Regarding stopping the chemo, it's very hard on the body, and the side effects may outweigh the benefits. The oncologist may be willing to let him heal for 6 months or so and try the chemo again. Or your dad may be willing to ask for a lower dosage. Either way, it may be worth having your dad talk to him/her again and see what alternatives there are for treatment if he can't afford the Xtandi. Sending positive thoughts!

Just had another idea. Is he on ADT? If so, perhaps suggest he ask the doctor to try adding Casodex to his ADT. It works sort of like (I'm not a doctor or a chemist) Xtandi and Zytiga but isn't as strong and is much more affordable. Maybe he could just try it for a month or two and see if it lowers his PSA? My husband did that and his PSA dropped but the MO wanted him to take Zytiga instead so he switched.
Posted 1/26/2018 3:45 PM (GMT 0)
Hiya, completely understand how you feel. Zytiga and Xtandi just became available and covered by insurance last year in the country where my father lives. Before that, I was dreading the day he may need it, and I wasn´t able to help him. But please, do not lose hope. There is always a way.

As others have said, your father may be a candidate for Zytiga, which should become avaialble as generic some time, no one knows when but let´s say, it is coming. It should be more affordable then. Have you tried contacting University Hospitals (Urology depts) in major cities in Iran, and asking if there is a clinical trial running for some new medications for PC? Could you find out if your father would be a candidate for clinical trials in the country you live in, and bring him from Iran? Believe it or not, I know a person who brought her father from non-EU to EU country to be part of a clinical trial, almost impossible, but she did it..... he would need to bring all the medical records, pathology samples, etc, etc, so that they could establish his disease, and some very good negotiating skills on your part with the hospital staff.

In the meantime, has your father tried some of the older generation medicines like ketokonazole, it can really help...and it should definitely be available in Iran.

Don´t loose hope, there are solutions out there.
Posted 1/30/2018 3:46 PM (GMT 0)
Thank you everyone, thank you Charles. smile
We are still hopeful.
Posted 1/30/2018 4:27 PM (GMT 0)
Good morning, Farz53,

I'm so sorry you're having to deal with this. I don't know if this will help in Iran, but this link gives information about getting help paying for Xtandi.

https://www.xtandi.com/financial-support?utm_source=bing&utm_medium=cpc&utm_term=Help%20Paying%20For%20XTANDI&utm_campaign=Branded%20Sitelinks&gclid=CLmBj82MgNkCFcKcgQodDy8INw&gclsrc=ds&dclid=CM2kks2MgNkCFU0NgQodUp0NGg

Hoping for the best,
Donna.
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