[2grahamParticipant]

 

Is anyone else suffering from neutropenia after long term Revlamid use?

I have been on Revlamid maintenance therapy since my SCT 4 years ago. It’s been great, no sign of the myeloma returning but it’s beginning to take its toll. A few weeks ago I had to stop treatment due to a very low neutrophil blood count. And it’s showing no sign of improvement even though I’ve had no medication now for 6 weeks. As this is part of a trial (Myeloma XI) it’s all new to the doctors, they just don’t have any data, so I just wondered how big a problem this was. Anyone else been on Revlamid long-term?

[chris55leesParticipant]

I am on Revlimid maintenance as part of Myeloma XI trial .In March of this year (three years after SCT) I had to reduce my dose to 5mg due to neutropeania. Hope this is of some help

[2grahamParticipant]

Thanks Chris. Sounds familiar. I too was reduced to 5mg after about 3 years or so.

 

[chris55leesParticipant]

Hi Graham presumably your count started to drop again . I was disappointed when the dosage was reduced . Chris

[jcraddockParticipant]

I am also on the same trial. I struggle with low neutrophil counts for the last 6 months having had no problems for 18 months.

At the moment I am on 10mg for three weeks then 2/3 weeks recovery. I have had to have a few GCs-f injections to boost the neutrophils.

I do not know what will happen ,after my lastest course, as it seems to be such a struggle to keep the neutrophils up.

It is a difficult call as I am sure the drug is helping to keep the paraproteins just under 5% but the neutropenia allows you to be more open  to infection….

[brainstorm1Participant]

Been on renolidomide for 14 months but the trial people stopped all medication because it was affecting my kidneys they say. Waiting for more info at the end of the month. But I feel great.

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