Timelimits for Lenalidomide?

[BPBS9]

Hi - can anyone tell me please whether there are any limits to how many consecutive cycles someone with MDS 5q del can remain on Lenalidomide before having to head for a stem cell transplant? If there is a limit, is that cost driven or clinically driven ie declining response to Len (I'm on Len 10) treatment? I've been told there is no alternative --- it is Len and Allo STC for me. Thank you.

[chris]

Hello there

I think these are valid questions that you should be asking your clinical team as we cannot give medical advice on this Forum. Your medical team have your full medical history and are presumably monitoring your response to lenalidomide to check it is working as hoped?

I see you’ve made another post with a question about stem cell donors so I’ll respond to that under the other topic.

Meanwhile, I hope you are staying well and not having too many side effects from the lenalidomide?

Take care

Chris

[JBLA7]

Sorry. Bit late with reply.

If its of any use I had 34 cycles of lenny (5mg) before I had to come off.
Transfusion free for over 3 years

Judith

[chris]

Hi Judith

Many thanks for responding to this query and giving your personal experience. Very helpful. I hope the person enquiring got the information they needed from their clinician.

Was there a reason that you had to come off lenalidomide and are you saying that you’ve remained transfusion free for 3 years since you came off? Or that you had 3 years transfusion-free whilst you were on the lenalidomide?

How are you doing now? Hope you remain well?
Best wishes

Chris