Earlier this year my psa rose after my monthly Lupron shot. MO put me on Nubeqa.
Psa the day before starting to take the pills my psa was 1.72, doubled in one month. two weeks later mt psa was 0.60 and a month later 0.16, so its all good!
I have no side effects that I can tell are related to Nubeqa. Still low energy and endurance. Sports drinks help and hit the gym 3-4 times a week. Also PT for shoulder that was repaired years before my cancer diagnosis.
Any comments on Nubeqa? Not cheap but, for me, lots of financial aide.
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teacherdude70
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Nubeqa seems to be better tolerated than the other new anti androgens. It does not cross the brain blood barrier and it is not associated with seizures. Hypertension is also rare.
50% or more of the patients in the clinical trial had a favorable response for 3 or more years.
I have been on Lupron plus Nubeqa since April 6, 2021 where Lupron plus 50 mg bicalutamide failed (after 8 years) with slowly rising PSA (at .67 on 3/12/21)- after Nubeqa on May3rd .15 , to undetectable on July12. I have had headaches and nausea which may or may not be from the Nubeqa as a small amount does pass the blood brain barrier, but these are lessening and a price I am willing to pay. My daily exercise regime has ameliorated all fatigue and muscle wasting. Best of luck!
I am in the same boat as you are and my doc at Dana Farber want me to start on Nubeqa because PSA is rising, Lupron less effective, Gleason 9. But they tell me Nubeqa us 12k a month. Were you able to negotiate a friendly co-pay?
Yes. Bayer the manufacturer has a program where you can apply for assistance. They offered me free medication from April when Nubeqa was prescribed until 12/31/21 after giving me 1 free month. I actually got assistance from my treating institution. The number to contact Bayer for possible financial assistance , the drug manufacturer, is tel:18002888374
Darolutamide (Nubeqa) is a great second line anti-androgen IMHO . You can private message me if you need any further assistance in getting financial co-pay help. Let me know how you make out. Be well
Got my denial from BCBS yesterday. It read in part:
"Based on our records you are using this drug for:
- castration resistant prostate cancer in combination with unspecified metasteses staus
-using in combination with Lupron
Medicare references do not support this use. Our records show you are using this drug in combination with Lupron. We were unable to determine if you have metastatic or non-metastatic disease. FDA labeling only supports the use of the requested agent in patients with non metastatic castration resistant prostate cancer."
In fact I have nmCRPC. Dont know what I am missing here.
Who represented you in your negotiations?
I am a patient at Dana Farber in Boston.
So happy to have found a couple of guys like me.
I am Gleason 9, robotic prostatectomy 2015. 39 radiation treatments, Several rounds of Lupron, AUS for incontinence. PSA rising from 1.0 to 1.07 to 1.77 in last 3 months while on Lupron.
Thanks for your help. And for sharing your experience.
I think you need to have your doctor directly state you are non-metastatic in words and support the statement with "nmCRPC" They said unable to determine which leads me to think the report wasn't clear enough.
Its the next step for me. My psa was rising pretty fast, lupron and all. My Gleason 9 told me I should do something so I went to Dana Farber and Dr Taplin there prescribed Nubeqa (darolutamide) as next generation ADT.No metastases thus far so she said Nubeqa is indicated. It costs 14 k a month and my BCBS denied it right away. They later negotiated it down to 3k a month co-pay but I appealed to the VA and 2 weeks later It arrived. Going to take my 4th dose (2 pills twice a day) right now. The good news is that I have it in hand, The best news will be that it works!
Blue Cross Blue Shield. I contacted VA by secure email myhealthevet.com.I have that "privelege" because I have been a patient on and off over time. If you gt an account, all your records are there and you can email individually, certain "team" members. I started with my primary, then urology, then pharmacy and hit the jackpot with Community Care. They scheduled an oncology appointment, i went to mee the oncologist and told him my story. I will now be getting life time Lupron from VA, I can keep my doctor at Dana Farber and the VA sends the Nubeqa to me by mail.
If you want to talk more about this, PM me your phone number and I will call you.
My prostate cancer history is strikingly similar to yours! Doctor just mentioned changing to NUBEQA within a year. How much is this medication costing you?!?!
I have been on Nubeqa now for 10 months and other than the loss of energy have no side effects. At 74 with zero testosterone, monthly Lupron, low energy was in the cards anyway.Gym,gym, gym, and do things!
Very expensive medication, $100 a pill,4 per day. First month is free when you apply with Bayer. The cost drives medicare to Catasrophic in the first month. Then covers 95% of it. Leaves me with 5% = aprox $600. However there are several organizations that will pay all but $10 of that. Private message me for more and the one I benefit from. Total cost for the 10 months is $90.00. PSA was undetectable after the second month.
Your Oncologist needs to prescribe it and you need to apply for the free month but first your insurance needs to agree to pay. Shouldn't be much of a problem however.
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