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Been in remission for almost six years with no relapse or major side effects. My specialist and I have discussed a number of times about how well I’m doing on 10mg and if I go off do numbers go up. I’m thinking of getting MRD testing to make a decision. I really would like to get off chemo and also concerned about secondary cancers and heart disease. I know everyone has a different journey with their treatment but feedback would help
Can anybody else share their experience and struggles with… read more
Answer Summary
Members responded to Jim's question about how long to stay on Revlimid maintenance after nearly six years in remission, with many sharing... Read more
Why did Kaiser Permanente take me off all forms of chemo in 2010? Why have I, nobody special, been away from my oncologist except for annual video conferences after bloodwork since then?
Revlimid and other cancer-fighting drugs saved my life. Once done, they're worse than used toilet paper because they're toxins.
I think Revlimid is sometimes used as a placebo, and a dammed expensive one too.
Google ProPublica: the price of remission.
Trust but verify
I was on 25mg Remlivid for 2yrs then reduced to 10mg for last 2yrs. Now on 5mg after a 9month break. My oncologist suggested staying on low dose as it has kept MM in remission. However, it really depends on your general health, age and pending no other health flair ups of any other capacity. Everyone's journey is different.
Take care Jim and make the best decision for you!
Maybe try ClonoSEQ? @A MyMyelomaTeam Member talks about it. I think it’s important to let your immune system get back to normal. I don’t think long term drugs allow that ?
Paula🌹
Donna, a couple of thoughts on Revlimide. Remember the thalidomide babies in the sixties, birth defects, no arms, legs, stuff like that. I understand that's essentially Revlimid. Since it can cure cancer, I'll forgive it for it's past sins.
I believe I'm cured of MM. If someone prescribed Revlimid for me and I used it and it served no legitimate medical purpose except to give me hope, it would fit my definition of a placebo.
You may have seen the very short comment by Nancy Epsy on this site a couple of days ago.
She's 23 years out from MM. My wife saw me with tears running down my face after I read it. Then I manned up and went on Al Gore's wonderful internet and in less than one hour found ten people who have been free of Multiple Myeloma for longer than I have. Try Stella Brown, 43 years, or Angela Hentrich, 41.
Donna, my gallows humor and shiny disposition are my way of coping. Nancy Epsy exposed the underlying Me.
Been on 10mg 21 on 7 off for 4 years. MM appears under control without symptoms and no medication side effects
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