The best answer for you is you doctor. I taked Revlimid for 4 years. Now my doctor changed to Pomalyst . To many questions

Hi Cynthia - Great to hear that your BMB is Negative.
Sorry to hear about your fatigue and CBC Levels.

I'm my recent research, I've found that having all values of the CBC as Normal and a Normal B2M are possibly the most important of your Remission. It seems they're more important than the existence of an MSpike.

Its sorta like people with MGUS. They can have a MSpike as high as 3.0 and only require Monitoring rather than MM Meds. These people typically have a BMB Plasma involvement of 10% or less. If their Liver and Kidneys are fine and there's no CRAB issues, such as high serum calcium and no severe anemia, they don't take Revlimid or go through Induction, etc.

Regardless, having a Normal CBC and B2M means that you're well equipped to fight off infections, from both bacterial and virus. When our CBC level are low (basically anemic) Respiratory Infections can turn into pneumonia that become hard for us to fight off. I'm not surprised that Revlimid is keeping your levels low.

See if you can either take a short break (3 to 6 months) or reduce to 5mg (all decisions for your Doc to make but a conversation that you'll need to initiate - he/she is unlikely to simply offer), in order for your CBC levels to strengthen.

Over the course of a year, my CBC levels slowly regained to Normal once I was off all MM Meds. My last few items achieved Normal in the last 4 months. One of the last hold-outs was my HCT, which is the percentage of Red Cells in blood. When the percentage is low, it means I was anemic even though my Red Cell Count was Normal.

To me, it seems that we are over medicated for the sake of Remission but the results keep us vulnerable - sorta of, The Operation was a Success, But...

All throughout my treatment, they wanted me on higher levels of Meds. I did exactly as requested during the first 12 weeks of Induction, but once my Labs returned to Normal, I became very involved with the dosage and products that I would accept (Velcade's damage had already been done and can never be undone - permanently bad neuropathy).

We are all very different in our tolerance, response, needs, etc. but I know I would not be as well as I am had I not requested changes to their Standard of Care Plan. Since they were my Requests, they were very supportive in Trying Things and Monitoring me closely.

What was right for me, may not be for you but getting involved with your treatment through discussions may help on many levels.

All the Best

Larry2
I start scrambler treatment at Mayo Scottsdale coming up this October. I’m a little disappointed insurance does not cover. I understand it’s about a coin toss whether it works or not. I also have to travel 400 miles round trip to get there so rooms and food for 8 days give or take. I drove both ways yesterday to get evaluated and it was too much to do it daily. Can you place a % on how much it helped. Did you do all 10 treatments? They told me about 50% get some benifits with some getting some relief and some no relief. Some get total relief.
As for revlimid I took it 8 months but I think I had one week off in a month. I was also doing Velcade weekly for awhile and the twice a month for awhile. I did this all with the occasional Zometa treatment and the dex with it too. All with revlimid. I never felt good one minute for this 8 month period.
After my bone marrow transplant I requested other maintenance drugs because of my feet. I did a year of the immunotherapy, injections monthly. Currently I’m cancer drug free. I take 4 grams of curcumin daily, plus other supplements.

I started Rev. just after SCT. That was June 2020, stayed on 25mg until about a year ago. Now on 10 mg maintenance. Now in remission and feeling pretty good, have some fatigue but nothing to complain about! Not sure about all those numbers and letters!! Wouldn’t understand them anyway! I just let the Doc tell me if I have a problem!! Good Luck with yours! 😀 👍🙏

@A MyMyelomaTeam Member, hi Larry I’ll share with you what I’ve experienced. I’ve been on Revlimid 10mg for 26 months. Along with Darlzalex injections still currently on, and Dexamethasone for about 9 months. My disease is under good control. I’m finally feeling stronger, almost back to my old self. My WBC tends to be low, between 2-3, it’s an ethnic thing. The rest of my numbers are fine. So I don’t feel like I’m in a weakened state. Just had my physical and my primary care doctor says my cholesterol is near normal. I’m no longer prediabetic. My thyroid function is good and overall I’m in pretty good shape. I need to be because my husband was just diagnosed with MGUS😳

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