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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.

How Does A Person Decide They No Longer Require "Maintenance Drugs" Such As Revlimid?

A MyMyelomaTeam Member asked a question 💭
Newfoundland, Canada
April 5
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A MyMyelomaTeam Member

I've been on Darzalex faspro and Pomalyst 2mg for over 6 years. My numbers are good. I'm still MRD positive so I won't be stopping maintenance. I'm just glad my myeloma is controlled 😉

April 5
A MyMyelomaTeam Member

I went off Revlimid for 7 months after being on it for 2 years with excellent results. Then my lambda started rising, mSpike not measurable, 10 mg Revlimid stopped the rising lambda. Who knows what will happen went you go off treatment. Everyone is so different but yet some similar results. It’s a game. And it’s your life you are playing with.

April 6
A MyMyelomaTeam Member

I stopped maintenance a year after my sct. The original plan was for at least two years of maintenance. Was on revlamid and velcade. Felt miserable all the time. Went down to just velcade. Lasted about 4 months and was still miserable. Decided, with my oncologist, that my body couldn’t handle it. It was a year ago in January and my numbers are good. Bloodwork every three months. Now just dealing with issues from the side effects. It’s never ending!

April 5
A MyMyelomaTeam Member

Curt, I was quite advanced with this disease when it was found. Pray, try to be positive and take supplements. I’ve been very blessed, 2 1/2 yrs no disease detected per blood work since SCT.

April 9
A MyMyelomaTeam Member

My doctor is considering taking me off maintenance because of angioedema and low white counts from Revlimid and then Pomalyst. First am getting a pet scan and bone marrow biopsy to see if the disease is minimal. Just switched to Pomalyst from Revlimid and I seem to be tolerating it though so might keep on with it.

April 7

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