Want to talk about Multiple Myeloma: Anyone else?

Thanks, Ginger. I'll check these out.

@tristram I certainly can understand your thoughts on this. When I was first told about my treatment, and the cost, it was overwhelming. Not to mention stressful! I was told about the BMS patient support and got help there. I have qualified every year, as we are both retired and have fixed incomes. You need to stay on top of things, and I do keep all my paperwork each year in case there is a need to prove anything. This past December, due to calendar and timing, it was a dicey situation to get approval for my next round, and I was ready to pay out of pocket for the co-pay if needed, to get my meds. It was a very stress=filled holiday season, coupled with weather-related delays to get the shipment in!

Here are a couple of websites you can look into, that may be able to give you more information, and some other avenues to pursue. I have not used the Leukemia and Lymphoma Society programs, but people tell me they are helpful. Please let me know if you find any of these useful!
https://www.bmsaccesssupport.bmscustomerconnect.com/patient
https://www.needymeds.org/drug_list.taf?_function=name&name=Revlimid
https://www.lls.org/support-resources/financial-support/patient-aid-program#:~:text=The%20LLS%20Patient%20Aid%20Program,%2C%20housing%2C%20utilities%2C%20etc.
https://www.biomatrixsprx.com/news/support-resources-for-patients-taking-revlimid-lenalidomide-capsules
Ginger

I've been given 3-months of assistance–hoping to extend it. The price of the pills makes one wonder if he can afford to live.

Best of luck!

We just submitted our 2022 tax returns and we were approved for the Revlimid patient assistance program. Have you tried to apply for assistance? We are on Medicare so there is still some out-of-pocket expense. We haven't figured out how much our actual out-of-pocket will be yet.

We did not qualify for assistance in December when we started treatment and ended up paying more than $7,000 out of pocket until we could get our 2022 tax return to them. It took some effort, but thank goodness we didn't give up on it.

Good luck to you.

We just submitted our 2022 tax returns and we were approved for the Revlimid patience assistance program. Have you tried to apply for assistance.?

Thank you
I usually nap everyday and exercise seems to help
The brain fog is worse when I am tired

@cat1952 Welcome to Mayo Clinic Connect. Things constantly change in the world of treatments for multiple myeloma. I will be interested to hear what your specialist has to say when you see her next week!

What have you done over the years to handle your fatigue and brain fog? How profoundly has it impacted your life?
Ginger

I was diagnosed with mm July 2015. Had a sct in Jan 2016 at UNMC. Went into remission until July 2022. Haven’t changed my treatment yeah as they consider my relapse as biochemical my m spike and my kappa light chains are rising above normal. It at a slow rate right now. Have an appointment next week with my mm specialist at UNMC so waiting to see what she thinks.
I have has fatigue and brain fog since my sct when I received chemo.
Take care

Ginger, Thanks. I'll check this out.