Want to talk about Multiple Myeloma: Anyone else?

Posted by Frazer 1 @frazer1, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

tristram | @tristram | Mar 8, 2023

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.

tristram | @tristram | Mar 8, 2023

Best of luck!

patty67 | @patty67 | Mar 8, 2023

In reply to @tristram "Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for..." + (show)

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.

patty67 | @patty67 | Mar 8, 2023

In reply to @tristram "Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for..." + (show)

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

cat1952 | @cat1952 | Mar 7, 2023

In reply to @gingerw "@cat1952 Welcome to Mayo Clinic Connect. Things constantly change in the world of treatments for multiple..." + (show)

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

Ginger, Volunteer Mentor | @gingerw | Mar 7, 2023

In reply to @cat1952 "I was diagnosed with mm July 2015. Had a sct in Jan 2016 at UNMC. Went..." + (show)

@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

cat1952 | @cat1952 | Mar 7, 2023

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

tristram | @tristram | Mar 7, 2023

In reply to @gingerw "@tristram I am also on Revlimid, and qualified for Patient Assistance through Bristol Meyers Squibb Patient..." + (show)

Ginger, Thanks. I'll check this out.

tristram | @tristram | Mar 6, 2023

Thanks, Ginger. They've given me a 3-month grant. I'm hoping to extend it.

Ginger, Volunteer Mentor | @gingerw | Mar 6, 2023

In reply to @tristram "Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for..." + (show)

@tristram I am also on Revlimid, and qualified for Patient Assistance through Bristol Meyers Squibb Patient Assistance Foundation. They pick up my co-pay. I have been on Revlimid for almost 2 years now. It is an annual grant process I go through.

Good luck, and let me know what you find out!
Ginger

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