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.

@slam

Healthwell Foundation has been helpful for us.

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Thanks! I'll check it out.

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@pmm

Yikes! Ridiculous for medication to be so expensive.

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My thoughts exactly!

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@tristram

Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for $17,000, and 30% of that is my co-pay. Bristol-Myers Squibb offers some relief, but it's limited. Has anyone found other sources for assistance with co-pays like this?

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I do not know what State you live in, but I would contact my Congressman or State Senator and explain your situation. They should be able to direct you to some agency or pharmaceutical person who can offer you assistance. My husband had prostate cancer. He was prescribed a medication that was not on the list for treatment of this cancer and thus was refused the prescription (it was $500.00 a month). I wrote to the head of Veteran Affairs in Washington DC. He received a phone call that he had an appointment to see a physician at a Veteran Clinic. He was immediately give a prescription and continued to receiver it until the day he died. Hope this helps. Don't need to see Horror Movies, this is living a nightmare. Hope this brings you a Knight in Shining Armor.
Gina 5009

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Thanks for the note, Gina. I'll write tomorrow.

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@tristram

Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for $17,000, and 30% of that is my co-pay. Bristol-Myers Squibb offers some relief, but it's limited. Has anyone found other sources for assistance with co-pays like this?

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I get my Revlimid prescription filled at Kroger pharmacy in Florida and fed exes to me. The pharmacist (?) there found a foundation to pay for my pills. Please check with your supplier

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Thanks--I'm doing that today.

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@tristram

Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for $17,000, and 30% of that is my co-pay. Bristol-Myers Squibb offers some relief, but it's limited. Has anyone found other sources for assistance with co-pays like this?

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

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@gingerw

@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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Ginger, Thanks. I'll check this out.

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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

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