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Myeloma

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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Which Supplements Or Vitamins Do You Take?

Which Supplements Or Vitamins Do You Take?

A MyMyelomaTeam Member said:

I'll look for the documentary; thank you
I went to Dana Farber in N.H....very busy but felt taken care of as an individual. It was not for cancer care. This was back in 2010 and surgery on my… read more

edited, originally posted 12 days ago

Hi - I Am A 65 Year Old Pretty Long Term Survivor Of Multiple Myeloma. I Am Looking For Info Regarding Cost Of Revlimid

Hi - I Am A 65 Year Old Pretty Long Term Survivor Of Multiple Myeloma. I Am Looking For Info Regarding Cost Of Revlimid

I am about to go on Medicare and was SHOCKED at the cost of the copay for Revlimid which I am starting as maintenance therapy. Even with the supplemental prescription coverage, it is obscenely expensive. Why is there no generic available? I am wondering how others deal with this? We don't qualify for the Leukemia/Lymphoma Society assistance program. Anything else out there? Thank you.

A MyMyelomaTeam Member said:

Here is the information. Bristol Myers Squibb Access Support .Phone (Phone number can only be seen by the question and answer creators).

posted 3 months ago

Maintenance Therapy After Stem Cell Transplant

Maintenance Therapy After Stem Cell Transplant

I am in remission after stem cell transplant but I was prescribed Revlimid as maintenance therapy. I have to take it until relapse. What is your experience with this medication.

A MyMyelomaTeam Member said:

And I was doing good with pain until a couple of months ago, pain in my hips and upper thigh , is that where Claritin helps is with pain ?

posted 7 months ago

Can People With Multiple Myeloma Taking Maintenance Therapy Get The Covid 19 Vaccine?

Can People With Multiple Myeloma Taking Maintenance Therapy Get The Covid 19 Vaccine?

Hi
I am on Daralex and dexamethasone for maintenance therapy. I ask my doctor about getting the Covid 19 vaccine and was told it may not be as effective because of the maintenance therapy. They did not say I could not get the vaccine, but I should check to see what the CDC guidelines were.

Thanks
Wordpass22

A MyMyelomaTeam Member said:

I will be getting my second booster soon

posted 2 months ago

If You Have Multiple Myeloma, Have You Had A Root Canal Or Shingles. I Need Both Yes And No Answers

If You Have Multiple Myeloma, Have You Had A Root Canal Or Shingles. I Need Both Yes And No Answers

As a retired physician, I hypothesize that a cause for multiple myeloma is long term exposure to your immune system by a never changing bacteria or virus. The most likely source for such a bacteria or virus is a root canal or shingles. Bacteria can multiply and divide without exposure to plasma cells in the tubules of a dead tooth. Shingles virus hides in the spine. The never changing bacteria from the dead tooth then leaks into the gum where plasma cells are constantly stimulated to create a… read more

A MyMyelomaTeam Member said:

I've had shingles and can't find an NHS dentist for a root canal identified need 3 yrs ago. Covid and increase in privatised dentists in UK.

posted 5 days ago

Anyone Have Severe Hot Flashes And Fatigue? I Am On Revlimid 15mg 2 Weeks On One Off And Dexamethasone 4mg 5 Pills The Two On Weeks.

Anyone Have Severe Hot Flashes And Fatigue? I Am On Revlimid 15mg 2 Weeks On One Off And Dexamethasone 4mg 5 Pills The Two On Weeks.

I am having such terrible hot flashes lately. I have had them all thru menopause but way past that now so do not think it's that. They seem to happen I do notice when feeling a bit of anxiety, but not always. Also extreme fatigue, not tired which seems strange, as the days I take the Dex I wind up with insomnia and for at least 3 days can't sleep then by end of week I can't get out of bed, but when I do I don't know how to sit and relax I wind up keep getting up to do things, which makes the… read more

A MyMyelomaTeam Member said:

God is good all the time 🙏 don't give up 😁

posted about 2 months ago

I Will Start Velcade Soon. What Can I Expect?

I Will Start Velcade Soon. What Can I Expect?

I am close to 94 yrs and will start Velcade next week. Where is it injected and what are the side affects?

A MyMyelomaTeam Member said:

I have velcade shots for maintenance 2 times a month in upper arm no side effects

posted 4 months ago
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