Connect with others who understand.

sign up log in
About MyMyelomaTeam

Myeloma

Questions + Answers

Don't see your question? ask question
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.
View:

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:

@A MyMyelomaTeam Member Wright thanks for the hug and hope all is well with you.

posted about 1 month 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:

👍

posted 15 days 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:

Injected under the skin in my upper arm twice weekly. After about 4 month developed neuropathy in feet and hands and discontinued velcade. After about 6 months the neuropathy faded away. Also the velread more

posted about 2 months 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:

Hi, talk to the Social Worker where you are being treated, they should be able to guide you through the sources that are available to you.

posted about 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:

Yes, I have had a root canal aprox 15 years ago. Yes I had a full blown case of shingles aprox 10 years ago

posted 5 months 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:

Mej thanks for the hug and hope all is well with you.

posted 5 months ago

What Treatment Can Anyone Recommend For Neuropathy On My Feet And Toes?

What Treatment Can Anyone Recommend For Neuropathy On My Feet And Toes?

Drugs treatment plan was Revlimid, Velcade, Dexaethasone. I stopped the Velcade once numbness and tingling got worse. I continue now with lower dose of Revlimid and Dexaethasone. The pain in my feet has gotten worse and have tried natural remedies but no relief. Dr prescribed Gabapentin and have taken now for a few weeks but was told it takes longer before I would notice if it’s helping. Had some bad side effects so now taking Lyrica which seems to be helping to take the burning sensation away… read more

A MyMyelomaTeam Member said:

Velcade gave me neuropathy. It is painful. Keeps me awake

posted about 2 months ago

Back Pain

Back Pain

So I've heard alot about bone lesions. I'm wondering if someone could tell me what the pain is like.
I have lower back pain for about a month and and today it's like my whole back hurts. It's just pain tho.
I'm not sure if it's from the MM or just pain. I'm still waiting to meet my new Dr on the 20th so I've been unmonitored for 3 months. I will have blood test this week.
I'm just wondering if anyone can tell me how the pain starts.

A MyMyelomaTeam Member said:

If u have bone lesions ,the pain is almost paralyzing,u can survive without rx pain meds

posted 5 months ago

Revlimid ??? Looking For Input

Revlimid ??? Looking For Input

My husband’s Multiple Myeloma is in remission (thank heavens). Ever since then he’s been prescribed a maintenance dose of a drug called Revlimid manufactured by Celgine Pharmaceuticals. In Jan of every yr., we have to lay $2500. then it’s $780 per month for the 21-day supply. He’s on it 21 days then 7 days off. These amounts represent the out-of-pocket costs after Medicare and a Cadillac supplement. We explored several avenues to no avail. This is a real hardship. Does anyone know of any… read more

A MyMyelomaTeam Member said:

I am widowed a d my income is low,so my insurance pays 9000 a month for my Revlimid,and i get help with the copay,it pays off to be poor if you need Revlimid

posted 5 months ago
Already a Member? Log in
MyMyelomaTeam My myeloma Team

Thank you for signing up.

close