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How Long Does Revlimed Do A Good Job? What Do You Take Next?
A MyMyelomaTeam Member asked a question 💭
posted December 27, 2022
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A MyMyelomaTeam Member

I was only on Revlimid for 3 months. I was switched to Pomalyst early on. I'm still taking is over 5 years later💕

posted December 27, 2022
A MyMyelomaTeam Member

Hi Bill - if you're in complete remission, its old news to stay on MM Meds like Revlimid forever. Look into getting a clonoSEQ MRD test. If you're 10 -6 Negative (no cancer per million cells), then going on MRD-SURE Monitoring is a very viable and preferred place to be. At my @A MyMyelomaTeam Member Story there's a link to Dr. Costa's Video. He did the MRD-SURE Case Study. In his Video, he stresses the need to get off MM Meds when 10 -6 Negative. There's additional Links to other related items. I'm MRD Negative, off All MM Meds for the past 7 months. Excellent Labs and quarterly MRD tests that are all Negative and no MSpike. I started at 80% bad plasma and 3.1 MSpike. Induction and maintenance, without a SCT got me clear in 7 months.

I also take 8 grams of C3 Curcumin in an effort that it will help keep me in remission. My Story has Links to a NIH Study and reference to Articles that show its value. I found 3 Case Studies prior to starting Induction and was taking 4 grams daily all through Induction and then 6 grams daily during maintenance and recently upped to 8 grams. Doc was fully aware and was pleased that I was taking it.

I also had one high risk of t(4,14). MRD Monitoring is viable with zero and one high risk factor, according to the MRD-SURE Case Study Report.

All the Best - Larry2

posted January 19 (edited)
A MyMyelomaTeam Member

I was on Revlimid for 8 months and then my Mspike was below 1.0 to .0003. My doctor at Waterman took me off the medication and 3 other meds as well. when my Mspike is 1.0+ I will go back on the medication. Take care everyone and stay healthy as you can.

posted December 28, 2022
A MyMyelomaTeam Member

We are all different so nobody really knows. Revlimid is accumulative over the years and many of us have our dosage reduced to better tolerate it. I have been on it 5 years and are presently in 5mg. Again, the next protocol will depend on genetics and other things. We really are so different.

posted December 27, 2022
A MyMyelomaTeam Member

I take PhysicianNaturals C3 Curcumin (PN). I've been testing Dr's Best C3 Curcumin. Though Dr's Best is a little smaller and easier to swallow, it gives me very bad indigestion when I take all 8 at once. I may split it across the day or simply stay with PN brand. Another member has been taking Dr's Best but reported damaging his esophagus - I believe he was taking 8 at a time as well and that he's cut back to 6 per day.

My Story has Links to both.

I plan to look into other C3 options - there's a few - Liposomal C3 Curcumin and a new version as mentioned by Patricia7 (I believe), both requiring less per day. I'll report to my Story once I've tested both.

posted March 11

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