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I’m going to be taken off Revlimid in two months as my blood work is stable. Will I feel better being off of it? Wishing everyone a fantastic day!
Answer Summary
Members overwhelmingly shared that coming off Revlimid brought real relief, with the most common improvements being less fatigue, reduced... Read more
I was diagnosed Oct of 2016, 7 months Dexamethazone/Revlimid/Velcade and hit "remission" in July 2017. Sept of 2017 had a SCT. Went on Revlimid maintenance 2 months later at 15 mg dose. Counts all stayed good, dropped to 10 mg and then 5 mg and then 2.5 mg over the next 3.5 years. My MM dr asked if I was brave, which I said I was and he took me off Revlimid. It has been 4.5 years since I went off the Revlimid. I no longer have explosive diarrhea, the fatigue has lessened a lot, but still get fatigued if I over do things. Foods taste better (as the weight gain has shown, LOL). My counts have all stayed within 1 or 2 points since the transplant, which as of next week was 8 years ago. I still work 40 hours a week, do a lot of canning on the weekends (trying to cut out processed foods and overly salty foods from my diet) and I will be 65 in a month with no plans on retiring!
I asked for a work release from oncologist just to get back to a desk job at plants again cause I work harder staying at home cooking breakfast and dinner cleaning house taking care of 2 dogs and a cat.
Enjoy retirement ANY way you can. ....getting what we got is not a good retirement plan. Hate IT! Ok, day trips with pain meds included in the picnic basket.....or whatever.
Hi Jeff.
I've been med free for a year. I'll probably be back on revlimid soon as protein cells have come back.
Personally I didn't feel that much better the whole year.
Question. Did you go through a SCT?
Honestly, I haven't felt "normal" since mine. It did a number on me.
But as you know, we're all different.
Charlie
@A MyMyelomaTeam Member if you are able to get off them I think you should. My oncologist said after two years on maintenance additional years only slightly increase the chance of no recurrence so I think you have a better chance not being pumped with chemo for years. A lot of research agrees that if you are doing well after two years you should get off of it. And as long as you are being monitored every couple of months you should be good. Everyone has to make their own decision. I wish you the best!
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