[dennisParticipant]

In remission after stem cells and chemo been in remission ever since great. However last December they took me off all meds lenalidomide because it was destroying my immune system making me animic. Then in June this year had bloods done and the say the have dropped again this has now caused me to not be able to walk more than 5mts before I have to sit and catch my breath. Have been stuck in the bungalow for 2 months.
My specialist has cancelled our next appointment and wants me to have another bone marrow. Has anyone else experienced this. Dennis

[rabbitParticipant]

Hi Dennis,

My situation is similar in some ways, different in others.

I have been in remission since 2023 and have been on lenalidomide as maintenance. That was until a few months ago: my platelets have been too low to have it. I had a biopsy last week, currently waiting for results and discussing next steps.

According to the blood tests, I have been anaemic throughout remission. However, that has not stopped me exercising, so that is where we differ.

In terms of the rest of my immune system, my neutrophils are shockingly back in the normal zone for the first time in years as I have stopped taking lenalidomide for now, and the rest is on the low side but manageable.

Regards
Rabbit

[blobgobParticipant]

Hi Dennis,

The doctors have the advantage of seeing the charts of your long term Hb and WBC results, and if they are falling then this indeed a cause for concern.

I too recently had another bone marrow biopsy as my neutrophils are down a bit. As it is a pretty painless outpatient process taking under and hour, why don’t you just go ahead with this and then you can discuss future options with your consultant?

Regards,
Derek

[Author]

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