Revlimid and decrease in neutrophils

[helenr]

Hello everyone

My husband is finishing his first cycle of Revlimid (10 mg dose) and is now in hospital with a mystery infection and neutropenia – 0.5.

I know the cell lines usually drop but I would like information on when they should begin to recover. Fortunately he is being closely
monitored because he is on a pilot study where they will add some stem cell factor if necessary after two cycles. He was told that they would provide antibiotic support until the neuts rise.

We have waited so long to try Revlimid and I pray it will be successful. Apparently there are bacteria that like people with iron overload.

Thanks for your help.

Helen

[CathyW]

My ANC was .3 when I started Revlimid. A week later I ended up in the hospital with a mystery infection. I was there two or three days. Before Revlimid, my platelets were in the thirties, my RBC was 3.08, my HGB was 10.2 and my HCT was 30.6. Six weeks to eight weeks later all my counts were in the normal range. I have been on Revlimid for 15 months. My dose has been adjusted from time to time based upon my counts. At the moment, only my platelets are below normal — 62.

I have not had any adverse reaction to the drug. I work full time and generally feel fine.

I have been dx with RCMD no chomosonal abnormalities.

[choijk]

Hi Helen,
How is your husband doing with the Revlimid? DId his counts bounce back up ?

[helenr]

Thank you for asking.

I think most people on the treatment trial here had drop in counts, some requiring hospitalisation.

I was about to post David’s success story. When his counts began to recover the protocol was to reduce the dose to 5 mg. This began working slowly with longer spacing between transfusions. His last Tx was ten weeks ago and last week his Hb was 142 (wow). the platelets have been the slowest to recover. We are so excited. Now his muscles have to regain strength as he was very inactive due to other problems beside the MDS.

David always has a rare side effect of a drug and he had a DVT behind his knee. Now I know why the Dr always checked his ankeles for swelling. He is sensitive to clots so will be on blood thinners for life. We have bought a supply of the special socks and will have to be aware.

It now five months since beginning Revlimid. There will be a BMB next month.

Now we are wondering how long it will keep working but are going to make every well moment count.

Never give up hoping for a new treatment that might work for you.

Best wishes

Helen

[choijk]

Helen,
I am so happy for you! I am glad to hear that Revlimid is working so well for your husband!!

[Author]

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