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What are your experiences with lenalidomide (Revlimid) for MDS?

Posted by nbadry @nbadry, Oct 19, 2024

My MDS del 5q has deteriorated over the last few months. I've had one transfusion (Hb was 74) and am about to have another. I'll qualify for subsidised lenalidomide when I've had 8 units of blood altogether. I'm wondering how much of an improvement I'm likely to see in haemoglobin counts on the drug. Feeling pretty lousy once it dips to the low 80s...Thanks in advance.

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jeffreykassover1 | @jeffreykassover1 | Mar 21 8:27am

I've been on lenalidomide for one month without any positive results. Just had my third transfusion, and the doctor suggested another medicine. Based on what I had dead with this group, my impression was that it could take a couple of months to kick in. I asked the Dr if I should continue with the lenalidomide for one more month and he was ok with it, not optimistic. Did I do the right thing by continuing with the drug or should I try something else?

REPLY
1 reply
janetlen | @janetlen | Mar 22 10:21am
In reply to @jeffreykassover1 "I've been on lenalidomide for one month without any positive results. Just had my third transfusion,..." + (show)
@jeffreykassover1

I've been on lenalidomide for one month without any positive results. Just had my third transfusion, and the doctor suggested another medicine. Based on what I had dead with this group, my impression was that it could take a couple of months to kick in. I asked the Dr if I should continue with the lenalidomide for one more month and he was ok with it, not optimistic. Did I do the right thing by continuing with the drug or should I try something else?

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@jeffreykassover1
Since your Dr agreed to another month on the med it must be a reasonable decision. Where are you receiving care? What level are your myeloblasts at?

REPLY
1 reply
jeffreykassover1 | @jeffreykassover1 | Mar 22 11:08am
In reply to @janetlen "@jeffreykassover1 Since your Dr agreed to another month on the med it must be a reasonable..." + (show)
@janetlen

@jeffreykassover1
Since your Dr agreed to another month on the med it must be a reasonable decision. Where are you receiving care? What level are your myeloblasts at?

Jump to this post

I don't know anything about my myeloblasts. I'm being treated locally (S. Florida) and my Dr. has all the qualifications: Harvard Med, Brigham and Women's, and Dana Farber. So, I trust him. Any thoughts or suggestions?

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1 reply
janetlen | @janetlen | Mar 22 12:00pm

Jeffrey: it is important to trust your Dr. You also need to know where your Myeloblasts are at. Your Bone Marrow Biopsy should have revealed that level.
Familiarize yourself with your IPSS-M score. The tool is on MDS-foundation.org :https://mds-risk-model.com/ You will need your latest CBC results and you should also have the results from your BMB. You can now download the tool too. Also, download information on MDS from the foundation and read it: https://www.mds-foundation.org/resources/materials. The Building Blocks of Hope is helpful. You can also request the documentation be sent to you. Did you have symptoms of MDS before you reached the transfusion stage? Your Dr may feel the need to be more aggressive with your treatment. Myeloblasts and the fact you are transfusion dependent can play into his decisions.

REPLY
1 reply
janetlen | @janetlen | Mar 22 12:03pm
In reply to @jeffreykassover1 "I don't know anything about my myeloblasts. I'm being treated locally (S. Florida) and my Dr...." + (show)
@jeffreykassover1

I don't know anything about my myeloblasts. I'm being treated locally (S. Florida) and my Dr. has all the qualifications: Harvard Med, Brigham and Women's, and Dana Farber. So, I trust him. Any thoughts or suggestions?

Jump to this post

https://connect.mayoclinic.org/comment/1264132/
Jeffrey - I must have forgotten to press the reply button.

REPLY
jeffreykassover1 | @jeffreykassover1 | Mar 23 8:09am
In reply to @janetlen "Jeffrey: it is important to trust your Dr. You also need to know where your Myeloblasts..." + (show)
@janetlen

Jeffrey: it is important to trust your Dr. You also need to know where your Myeloblasts are at. Your Bone Marrow Biopsy should have revealed that level.
Familiarize yourself with your IPSS-M score. The tool is on MDS-foundation.org :https://mds-risk-model.com/ You will need your latest CBC results and you should also have the results from your BMB. You can now download the tool too. Also, download information on MDS from the foundation and read it: https://www.mds-foundation.org/resources/materials. The Building Blocks of Hope is helpful. You can also request the documentation be sent to you. Did you have symptoms of MDS before you reached the transfusion stage? Your Dr may feel the need to be more aggressive with your treatment. Myeloblasts and the fact you are transfusion dependent can play into his decisions.

Jump to this post

Hi, and thank you. I will follow up on all your suggestions.

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