5q del being treated with Revilimid

[Gail Goodridge]

I was diagnosed last March after a BMB. I had been geting B12 shots for about 2 years prior to counteract tiredness. I was in good health other than that. After completeing a strenuous multi day hike and noticing that I was breathing in a labored way the whole time, I returned to see my cardiologist and a pulmonary specialist. Both confirmed I was well and suggested seeing a hematologist. He did the BMB and diagnosed MDS 5q del and recommended Revilimid 10m, 21 days on, 7 days off. A second opinion at MSK in NY confirmed and I am currently in treatment there.
My doctor at MSK says I should expect to be on Revilimid for the rest of my life, or until it stops working. The hemoglobin is the count he is most focused on and in 6 months that has moved from 8.5 to 11.1. I dreaded taking Revilimid but have found it to be very manageable. In the beginning I had a few minor symptoms, but now that has calmed down and the worst symptom is constipation which I successfully treat with aloe juice.
I am 70 year old female.
My husband tried ordering Revilimid from India. It was unsuccessful.
Wishing all of the posters on this board good health. Reading the posts has been very helpful to me and for that I am most grateful.
Be well!

[Lesa]

Hello, I was diagnosed with MDS in 2009, after 7 years of “watchful waiting” during which time I had a CBC every 3 months and my dr. was also focused on the hemoglobin level. It gradually decreased until June 2016 it was at 8.0. Super fatigued and also could not breathe. At that time I began Revlimid 5mg. I have the same forecast as you…stay on for the rest of my life (I’m a 59 year old female) or until it stops working. In the 2 years I’ve been on Revlimid my hemoglobin has increased back up to the 13’s! I also am 21 days on, 7 days off. No side effects, but thanks for the aloe juice for constipation suggestion. Best of health to you also.

[Diane Dugan]

I have been on Revlimid 2.5 mg for the last six years. Just recently my hemaglobin dropped from 11 to 9. Doctor increased my dosage to 5mg and I have 10 more days left before another blood test. Very tired and short of breath again. Same symptoms as when I was first diagnosed with MDS Five q Del. Has anyone been on Revlimid for longer than this? If so, is it still working?

[stacey]

Hi. I have been on and off Revlimid for 14 years — since when it was a clinical trial drug. I initially started at 10 mg, but once it started working, I was lowered to 5 mg and remained on that dose for many years. For a brief time, one of my doctors lowered my dose to 2.5 mg to lessen the side effects, but I was not a fan of that dosage (not sure it worked as well for me) and asked for it to be raised back to the 5 mg. I am still taking the 5mg. I have never done the 21/7 cycle; I was always taking one capsule daily. It has worked very well for me all these years. I have taken (by choice) a few breaks in the past from Revlimid, and when I resumed, it has always worked again, thankfully. Best wishes to each of you.
-Stacey

[Diane Dugan]

Thank you Stacey. I see my doctor on Thursday and hope my labs are better this time. The fatigue is what bothers me the most. Hopefully, I will be back to normal soon.
My best wishes to you too…..
Diane

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