I wanted to update my status in the fight and ask for some guidance.
In March this year I started clinical trial at Sarah Cannon Research in Nashville, TN.
I had completed and and or failed radiation in 2001, Zoladex for several years, chemo in 2006, Lupron for several years, Casodex, Erleada, Zytiga, robotic prostate removal in 2022, Pluvicto and Provenge in 2023.
Only did two treatment cycles of Phase 1 clinical that looked at dose tolerance and escalation combined with Keytruda and Dr recommended I drop out and do chemo based on scan results with tumors in liver, lymph nodes and a couple of bone lesions on spine.
Went back to regular oncologist in Birmingham, AL and started six rounds of cabazitaxel and carboplatin in early May. It was a tough summer. Recent scan shows no progression since August scan. Guardian blood test revealed BRAC positive and oncologist now is suggesting Lynparza for that. While it is great to have another bullet for the gun, Medicare Part D plan shows monthly cost of $15,000 to $20,000+.
Not sure I want to spend that much to get a few months more. Any ideas on lower costs or guidance on path to proceed. God is so good to me and I am certainly blessed to be here.
Fight on…..
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Pmann
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The max of $2000 is only for drugs on the formulary, if it's not you pay the entire amount. Different plans have different formularies, check that out.
contact ONCO 360. Depending on income they work with your part D and it can be little as nothing to 1/2 off. That was my past experience with them. And by the way, pretty good run of 24 years 👍
If your drug plan covers it once you hit your deductible it should be less than $200 per month. With open enrollment in effect it’s a good time to look for a plan that covers it.
Would you mind sharing who your oncologist is in Birmingham? I use one in Birmingham but she just recently took a teaching position at UAB. Maybe looking for someone else.
Yes and I went with her from UAB to Urology of Ala three years ago. Not sure what sent them to UAB, but I went back with her. She is my fifth oncologist and I don’t feel like training another one 😜
We Probably crossed paths at Urology, I did six rounds of chemo in the basement this summer
Hi Pmann. My husband has been on Lynparza since March 2023 and it is working well for him. We currently have Wellcare Part D for drug plan with our supplement. Wellcare covered Lynparza this year and it is on the formulary for 2024 so we will stick with this plan for 2024. Max out of pocket this year was 3000.00 and next year will be 2000.00. After that we pay 0 for all drugs. I also understand that in 2025 there is the option to spread that 2000.00 max out of pocket over 12 months, but I don't know how that works. The Medicare site lets you put all your drugs in and it will give you your options based on where you live. I would double check with the plan itself to make sure the drug is covered and on their formulary. Open season ends Dec. 7th. medicare.gov/
His biggest side effect is fatigue. But it's hard to know how much of that is from lack of testosterone from Zoladex , the Parkinson's and all that comes along with that or the Lynparza. He tried cutting the Lynparza dose in 1/2 to see if that helped the fatigue, but it really didn't and PSA went up slightly so he went back to full dose. Side effects are tolerable and he's still walking 2 miles 3 times a week and doing PT once a month.
The most common side effect with Lynparza other than fatigue is low blood counts. Labs need to be done every 6 weeks so those can be watched. His blood counts are good so far.
You've been through so much and come so far. It really is impressive! Keep up the good fight.
Pmann, I just thought of something else I wanted to mention to you about Lynparza. It is classified as a tier 5 specialty drug. So that means that not every pharmacy is going to be able to fill this prescription. We were using the local Safeway, but they couldn't handle this level of drug. The fix was to just order it through the UC Health Pharmacy and have it delivered by mail. The pharmacy liaison helped us with that. We are in Colorado. It works out really well. We know within a few hours when it will be delivered to our door. The FedEx driver even brings dog biscuits for Hank my husband's yellow lab!
I just read your bio and bless his heart for having to deal with multiple heavy duty diseases. I have used Onco 360 for those specialty drugs before because I too am some distance from the Doc
Just an update, I will begin the Lynparza in January. I have confirmed my monthly cost of just under 1500 per month. The $2000 max limit will apply. I will keep you updated on my side effects and I hope that you and your husband have a great holiday season and good luck in 2025. May God bless.
Pmann, that's great to hear. Best of luck to you, I hope it works for you. Rick just turned 70 on Sunday, so we are feeling very blessed. Merry Christmas and Happy New Year to you!
The first time we confirmed cancer outside the prostate bed was April of 2022, after all second line drugs and prostate removal was complete. Started Pluvicto in Sept 2022 and thru June 2023. Provenge in fall of 2023. Confirmed liver Mets etc in March 2024.
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