Revlimid Neutropenia

[Michele Gaspar]

Hello, all, I was diagnosed August 2021 with MDS 5 q deletion and was on a watch and wait until June 2023, when I began Revlimid 5 mg orally every 24 hours. My absolute neutrophil count (ANC) has been about 1.4-1.5 since beginning the medication and is now at 1.0 I am asymptomatic for anemia (Hgb 8.9). My question for the Forum is : If you have had experience with neutropenia on Revlimid, what next steps were taken regarding dose reduction (which I do not with to do) and/or G-CSF (Neupogen)? I have thrombocytosis and mild anemia, with no transfusion. I am being treated at an MDS Center of Excellence and have had a second opinion at MD Anderson.

[Joe Catalano]

Was MD Anderson’s? Opinion the same as the opinion you’ve got at your current center. Would they be treating you the same way? If not, how would they be treating you?

[lisab]

Hi Michele

I was diagnosed in 2019 and have been on lenalidimid (revlimid) since. When I first started I was given 10 MG and doctor found my white blood cells dropped. I’ve been on 5mg since. I take it for 21 days and I’m off for 7. Could that work for you?
Lisab

[Lew Thomas]

I just completed 5th cycle on Revlimid. Started 10mg then reduced to 5mg. Did not work for me as I still need several transfusions and my numbers were all low. My ANC was alert low, HGB avg 7, WBC avg 1.6, RBC avg 2.3 and platelets dropped below 50. Looking for another drug but will probably start Vidaza.

[Michele Gaspar]

Hi, Joe, Lisa and Lew,

I want to thank you for stopping by and providing your personal stories with Revlimid.

Joe, The Center for Excellence first told me that there was “no consensus” for treatment. So, I had a second opinion with MD Anderson and Dr. Naval Daver there recommended 5 mg of Revlimid for the first month, then an increase to 10 mg. I went back to the Center for Excellence and have been taking 5 mg. I have an appointment with the heme/onc there on Friday, so we’ll see.
Lisa, I think that the plan going forward is to continue the 5 mg dosing until my next BMB on 7/23. Fingers crossed there.
Lew, I am sorry that that the medication did not work for you. Right now, the Hgb is holding steady and platelets are still increased. I take 81 mg of aspirin daily and try to stay as active as possible.
Again, my thanks to each of you for responding!

Michele

[lisab]

Michele

I’m also on asa 81 and b12 1200mg plus folic acid.
Hope all goes well. Let us know how your doing.
Take care!
Lisa

[bexar2120]

Yes Michelle, I had same initial outcome as you are/have experience. I have High Risk MDS TP53 variant and del-5, del-7. On month Cycle 2 and 3, severe neutropenia and anemic ( down to Hgb5 g/dl / Hct 13g/dl month 3). Cycle 4 my counts were all back to normal… as normal for a H R MDS patient. We decided to do dose/ days cycle reduction on Cycle 4 I believe. from max dose 7 day to current dose/5 day cycle. I am on Cycle 7 at this very moment. I actually had consult at M D Anderson Houston for clinical trial enrollment. They performed Bone marrow biopsy ( May 25 2023) that provided important information for upcoming clinical treatment decisions. Glad to say the Vidaza treatment is working for me. Staying the course with this dosage / 5 day cycle.

[Michele Gaspar]

Thanks so much for your information. I met with my heme/onc on Friday and she is not concerned about the neutropenia, given that it is expected in 80 percent of patients within the first 3-5 weeks of beginning Revlimid. I have a CBC scheduled for Friday, continue to feel well and am hoping for the best.

[Jimmy Greenhut]

Hi Michele, regarding Neutropenia they should hold off on 1 cycle so your counts will impprove. My case it’s been 2wks now.
I’m on chemo & my ANC for the last 2wks was 0.87. My cycle is every 4wks. Yesterday they gave me a shot of Filgrastim which stimulates the bone marrow & hopefully bring ANC above 1. I’m back out to Moffitt in a wk to see if the labs have changed? They are planning to give 1 more shot next visit. Holding off works as my Platelets were 52, now 119 yesterday. Best of luck & bring this up to your team

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