I’m Amanda and I have myeloma. I finished all my treatments the 1st June 2023. I was put on Revlimid 10mg. Since being on the revlimid they’ve noticed that I’m nutropenic and my blood platelets are always dropping.
My most recent blood check up showed my nutraphils had dropped to 0.7 and my blood platelets were just 99. I have to have another blood test today. They stopped my revlimid last week until I’ve had this blood test to see if my nutraphils rise whilst I was off the revlimid.
They’re also thinking of giving me another bone biopsy.
I’m getting alittle worried because I’m thinking something else is brewing.
Has anyone else had this happen on revlimid?
Hi @Amanda53 welcome to our forum I find ever since diagnosis, I have another blood cancer, my thoughts and emotions seem to be on high alert and as soon as my blood checks come back I dissect them in minute detail.
From what you say your medical team knows about your blood tests and symptoms and are looking into it.
Unfortunately it is a waiting game for you and waiting and not knowing I think are the worst feelings.
I see @Bitsy has shared their experiences for you
Be ever so kind to yourself and please do let us know how you get on.
Dear @Amanda53,
Welcome to our forum, I am so glad you found us.
You have had some really great advice here already! I just wanted to come on and say this is not an unusual situation and there can be lots of reasons for the sudden drop in counts. It sounds like your team are on the case with trialling a break in treatment. Do just be mindful that you will be more susceptible to infection while your white cells are low, so if you do feel unwell or develop a temperature please do seek medical advice.
I hope that when you go for your next blood test the counts have recovered but if they do decide to do a bone marrow biopsy this is quite standard as it gives the team a much clearer insight into what is happening. I do understand the worry this is all causing you, please do just take one day at a time!
Should you wish to talk anything through, all the ways you can contact us are on this link - How to contact Blood Cancer UK | Blood Cancer UK We would be very happy to support you.
Best Wishes,
Heidi (Support Services Nurse)
Hi Amanda,
I am currently on Revlimid (Lenalidomide) for the past year. I too experienced a drop in blood cell numbers (pancytopenia). I had a PET scan which showed no evidence of a myeloma relapse. As a result, my doctor dropped the dose of Lenalidomide down from 10mgs to 5. Hopefully the next blood test will show a rise in blood cells. Fingers crossed, you will get sorted soon. Best wishes, Chris.
Hi @ChrisHoward1312 a great big welcome and thanks so much for sharing your experiences, I am sure you will help others and that is what our forum is all about.
Please do let us know how your next blood test goes.
Fingers and toes crossed for you.
Look after yourself.
