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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.

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tristram | @tristram | Mar 6, 2023

Thanks--I'm doing that today.

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realtor1 | @realtor1 | 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)
Profile picture for tristram @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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tristram | @tristram | Mar 5, 2023

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

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gina5009 | @gina5009 | Mar 5, 2023
In reply to @tristram "Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for..." + (show)
Profile picture for tristram @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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tristram | @tristram | Mar 5, 2023
In reply to @pmm "Yikes! Ridiculous for medication to be so expensive." + (show)
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Yikes! Ridiculous for medication to be so expensive.

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My thoughts exactly!

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tristram | @tristram | Mar 5, 2023
In reply to @slam "Healthwell Foundation has been helpful for us." + (show)
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Healthwell Foundation has been helpful for us.

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Thanks! I'll check it out.

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Mentor
Patty, Volunteer Mentor | @pmm | Mar 5, 2023
In reply to @tristram "Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for..." + (show)
Profile picture for tristram @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?

Jump to this post

Yikes! Ridiculous for medication to be so expensive.

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1 reply
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agatha679 | @agatha679 | Mar 5, 2023
In reply to @gina5009 "I hope you will find peace knowing I am 92 and just diagnosed with MGUS strictly..." + (show)
Profile picture for gina5009 @gina5009

I hope you will find peace knowing I am 92 and just diagnosed with MGUS strictly by accident. I developed Trigeminal Neuralgia suddenly. Neurologist sent me for blood tests and there was that little m. I may have had it for a very long time, and just not known it, and probably would have been happier not knowing it now It has become that "one more thing" to worry about. I seem to be very healthy, and I am relatively sure you will be at 92 also. With all the new modern medicine I would say your chances are better than mine ever were. Smile, the sun is shining, and you were able to get out of bed this morning.
Gina5009

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You are amazing and a great encourager!

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slam | @slam | Mar 4, 2023
In reply to @tristram "Talk about sticker shock! My doctor is putting me on Revlimid in2 weeks. Twenty-one pills for..." + (show)
Profile picture for tristram @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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Healthwell Foundation has been helpful for us.

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1 reply
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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 4, 2023

You may have noticed that I removed personal phone numbers from this discussion. Connect is a public forum. We recommend sharing personal contact information using the secure private message function.

I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support. 🙂

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