One month on Xtandi with mCRPC

[xpbdb]

Thanks to all who responded to my post about the cost of Xtandi (Enzalutamide). I did get help from the Patient Assistance Network. I am very grateful. I had some kind of adverse synergistic reaction with Firmagon 9 days into Xtandi treatment, but switched back to Lupron yesterday with no apparent side effects. Yay! Labs 2 days ago showed my PSA at 0.135 and testosterone at 30. What a relief! I was scheduled to get a Ga-68 PSMA PET/MRI scan at UCSF, but I although I know I still have cancer, I don’t believe my PSA is high enough for the tracer to lock on. My urologist who gave me the Lupron shot yesterday says I should wait a year. I will ask my MO Monday and see if he agrees. In a year a Fluorine based PSMA tracer should be approved in the USA and available at any PET facility. I never thought I would be happy to only have to deal with hot flashes, fatigue and getting up 4 times a night to pee, but today I feel blessed!

[Tommyj2]

I note in your profile that you are 67 suggesting to me that you are on a Part D Medicare drug plan?.... Patient assistance picked up even though you have Part D? OR does your part D plan not include Xtandi?? Perhaps you are still working and still on commercial insurance??.... I've been dismayed at the number of Patient assistance programs that won't cover seniors if they have Part D coverage for a drug ( Part D generally leaves QUITE a lot left out of pocket even during catastrophic coverage phase) for those of us with limited resources this is quite a problem..... Using all my money just to stay alive is not my idea of quality of life.... How much are they covering and how long does it last ( if you don't mind my asking)

thanks....Bob

[xpbdb in reply to Tommyj2]

Yes I have Medicare Part D. Xtandi is a tier 5 drug under my plan, so I would still have had a $2200 out of pocket expense for the first month and $600 a month until the end of the year. Then repeat the $2200 again next year plus $600 X 11 months. Approximately $9000 for 2020. The retail for Xtandi is $12,000 a month, so I guess that is a bargain. I got help from the Patient Assistance Network which will cover my copay until next February. I will see what happens then. Look into PAN.

[Tommyj2 in reply to xpbdb]

It is reassuring to know that , sometimes, those with Part D can get Patient Assistance..... glad for you.... I'm not at the point of needing part D drugs at this point but know that there will come a time and planning in advance...

[monte1111]

Glad things seem to be working out. Really crappy when people worried about cancer have to worry about money too. With at least 41% of Americans diagnosed with cancer in their lifetime I really think we should be able to get political and do something. How long before the 41% is 50%? We don't need a thousand different insurance policies. I believe everyone should pay the same for standard of care cancer care: $0. Those with a lot of money can pursue other treatments if they choose. Know I'm not supposed to get political on this site. But hearing people struggle to pay for treatment pisses me off.

[Hidden in reply to monte1111]

👍agreed !