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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?

posted February 23
Last of 243 replies sign up to view previous answers
A MyMyelomaTeam Member

I take B12. And vitamin D

posted September 13

What Advice Do You Have For Others About Managing Fatigue?

What Advice Do You Have For Others About Managing Fatigue?

posted May 5
Last of 205 replies sign up to view previous answers
A MyMyelomaTeam Member

JackBirdsong You are so fortunate that it's that easy for you. I have worked for years to find an answer for fatigue and finally discovered that eating more protein and eating raisins which raise… read more

posted 2 hours ago

What Are Your Top Tips For Managing Myeloma In The Summer Heat?

What Are Your Top Tips For Managing Myeloma In The Summer Heat?

posted June 29
Last of 107 replies sign up to view previous answers
A MyMyelomaTeam Member

Drink lots of water stay hydrated. Do not stay in the sun for long periods of time. If I remember correctly some of the medications, we can react with sun light.

posted 2 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.

posted May 28, 2020
A MyMyelomaTeam Member

Talk to your Social Worker where you dare being treated. They should be able to help you find a grant. Also The Leukemia and Lymphoma Society.

posted August 1

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.

posted March 18, 2019
A MyMyelomaTeam Member

I just take what I am told LOL

posted November 6

How Do You Handle Unsolicited Advice Or Comments About Myeloma?

How Do You Handle Unsolicited Advice Or Comments About Myeloma?

posted October 26
A MyMyelomaTeam Member

I just start asking questions like “ is it different a CAR-T treatment targeting the 17p deletion or is it targeting the same protein as before
They usually don’t know then shut up other than… read more

posted 3 days 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

posted October 17, 2019
A MyMyelomaTeam Member

I’ll add that I had shingles after having both types of shingles vaccines years before I developed MM. I had chickenpox as a child. Chickenpox virus never leaves the body. It stays dormant until it… read more

posted July 27

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

posted January 14, 2021
A MyMyelomaTeam Member

I will be getting my second booster soon

posted May 2

I Heard That The Covid Vaccine Is Only 50% Affective For MM Patients Because The Necessary Antibodies Are Not Provided. Any Truth To This?

I Heard That The Covid Vaccine Is Only 50% Affective For MM Patients Because The Necessary Antibodies Are Not Provided. Any Truth To This?

I will have my blood tested to determine if I have Covid antibodies. My doc provided a script.

posted June 16, 2021
A MyMyelomaTeam Member

Me too I even had antibodies after my SST

posted July 23

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

posted April 1, 2019
A MyMyelomaTeam Member

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

posted May 8
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