My husband's doctor has not recommended, and declined our request for, any additional drugs like Zytiga because he has not demonstrated metastases, but we intend to find another doctor. We plan to try to get an appointment with Dr. Sartor at Tulane.
I've only recently read about Provenge and I would like to know when insurance (Medicare) would pay for it. Officially my husband is castrate sensitive (but PSA is trending upward on Orgovyx). After Axumin in February 2020 when PSA was just over 2 there were a couple of spots of activity in his prostate bed on the right side where margins were positive and one iliac node. He had proton beam radiation to the pelvic region and PSA went down to 0.03, but is heading back up. Most recently it was at 0.2 (5/18/21).
Any guidance would be appreciated.
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SuppWife
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I don't understand. In your original post, you wrote "...because he has not demonstrated metastases." The lymph node spots (N1) are metastases, but do not qualify him for Provenge. But pelvic bone metastases (M1) qualify him. Sorry, I should have written: "Provenge is only approved for metastatic CRPC"
He doesn’t have pelvic bone mets. The spots were in soft tissue where the seminal vesicles had been. His prostate was very large, 80% tumor, with EPE. No bone mets have ever been identified.
Thanks for explaining further. Then he is not considered to be metastatic (M1). The metastases in his pelvic lymph nodes (stage N1) do not count towards qualifying him as metastatic. And neither does the cancer in his prostate bed.
Similar diagnosis and post RP as your husband but in June-July 2019. I had 39 IMRT sessions including pelvic area I'm now just getting ready to begin coming off Eligard and Zytiga (AA-aberaterone acetate) which I started in July 2019. My insurance approved the Eligard and AA. I'm hormone sensetive and non-metastatic.
Correct. There is another member on this site (treedown) who also started out with lupron and Zytiga and is also starting to come off all ADT meds also. It's not at all uncommon from what I understand. Especially since zytiga is now off patent. It's Aberaterone Acetate.
After reading your husbands bio I see your husband has been through a few treatments. Both me and TomTom are in our initial treatments, both are curative in intent. I am not sure if this is a factor but there are so many variables involved I always miss something important. TA is great at pointing out which. Send him a PM he may be able to clear this up quickly. Zytiga was not SOC per NCCN when I started treatment and was added due to a second opinion at a Center of Excellence. It was added shortly after to the NCCN to regional disease that I was classified in.
My husband has always been in great health except for the prostate cancer. The ADT has caused loss of muscle and increase in weight, but otherwise his health is still very good. I really believe the shortfall is our choice of providers. He takes no medications for anything other than prostate cancer. We are seeing his GP soon to get his help adding metformin and maybe crestor. His total cholesterol is a little high, but ratio is not bad. Most of what I have learned to ask for I e learned from this board.
I am in the same boat as far as health and other meds and affects to body from ADT though I fight hard to keep them from getting away from me. At PSA test result I read enough that day to know I would be on ADT, possibly for life, and dropped about 40 pounds in the next few months. I am possibly the most fit I have ever been as I continue to push myself to gain fitness and endurance despite a T of <1. If you PM TA and he can confirm that your husband is a good candidate for Zytiga and it is supported by NCCN guidelines you would have all the support you need to push your MO to add it. Keep in mind it has its own SEs and I was taken off it for a short time when my lymphocytes crashed. I was put on 3/4 dose when I restarted. I suspect your MO may have specific reasons he is not explaining to you very well.
Provenge is for soft tissue mets. I do not recommend jumping from one drug to another without a substantial reason. If a drug is working, stay with it.
Provenge is approved for metastatic, castrate resistant PCa. The optimal response/OS was found to be in those who are asymptomatic or minimally symptomatic with a PSA under 5. It requires 2 increases in PSA while receiving ADT. I have Provenge scheduled for next month after my PSA started to tick upwards after six years of being undetectable, so I’m pretty familiar with it. I am currently on Lupron and Xtandi and had chemo per CHARTTED early on in my dx.
I am currently a patient of Dr. Sartor and have been since 2017 after Snuffy Myers retired. He is a brilliant, excellent doctor. I’m not sure he’s taking new patients but give it a shot.
Thank you so much. I really hope Dr Sartor will take my husband. We are not happy with the advice we have gotten from his current doctor. He lacks aggressiveness in his approach. Thanks for the reply.
Provenge should be sought by any man with any stage of PC in my opinion. There is currently a clinical trial underway for men still on active surveillance! Unfortunately Medicare does not share this view for economic reasons and will only cover it for mCRPC when it’s potential benefit is likely less for more advanced disease. Catch 22.Having his PSA rise from .03 to .20 could make the case that he is now castrate resistant. I would suggest a PSMA PET scan with the now approved Pylarify. It can detect metastasis lesions at that PSA level. Hopefully not. But that would bring a whole new level of engagement, including Provenge. 💪💪💕
Thank you for your reply. I will look into Pylarify. I didn’t know any scans would be valuable at such a low PSA. It does feel like early on based on his high post RP PSA he was advised to forgo scans prior to starting Firmagon and advised against salvage pelvic radiation bc they assumed he was metastatic, but they don’t make the same assumption when considering the potential benefit of a more aggressive early approach with additional drugs.
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