[sachbarnesParticipant]

Hi, dads levels have been dropping over the last month, they stopped maintenance Lenalidomide but it hasn’t helped. His Haemoglobin went from 80s to 45 last Friday and he needed 3 units blood transfusion. Platelets are around 26-30 for the last few months.

My question is what usually happens next. We have consultation for bone marrow biopsy on Wednesday. Will they move onto giving him steroids to lift the levels now? As I am guessing blood transfusions are just a temporary fix if his bone marrow isn’t producing what it should be.

His myeloma bloods are still 0, but have noticed his Kappa/Lambda ratio rise to 1.82 from normal range.

Tx for any advice.

[mulberryParticipant]

Hi Sachbarnes
My results seem to be doing a similar thing, but not so marked drop in haemoglobin though. I too still have no paraproteins evident but over the past 6 months or so, various parameters have been curving downwards and are now outside normal limits inc light chains, WBC, RBC and my kidney function has reduced. After I had the latest set of routine blood tests a month ago, the Dr (unfortunately not my consultant) ordered another set of “more detailed” tests to see if that would indicate what is going on. These turned out to be mostly thyroid, diabetes, iron studies etc. Those results came up on the patient portal a fortnight ago and all but ferritin are perfectly fine. I haven’t had a consultation since and I haven’t got answers, but perhaps it’s not that rare? I hope your dad gets answers soon.
Best wishes, Jane
I had COVID about 2 months ago, and although I wasn’t really unwell, I had a greater level of fatigue than usual afterwards, which I had thought might be significant, but that has improved again now.

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