myeloma2016 posted an update 3 years, 5 months ago
@mulberry hi Jane. hope you are doing fine. I’m now 9 months post (SCT). I have been on lenalidomide 10 mg. So far everything seems ok except my WBC is slightly bellow 3000.
I was told that ill be on lenalidomide as maintenance therapy for only one year, and second year they will change it to thalidomide. I have not ask further clarification yet a…[Read more]
myeloma2016 posted an update 3 years, 9 months ago
@mulberry Hi Jane
I have been taking lenalidomide 10 mg starting from 11 November 2020 just two months and half after my CST. My WBC are decreasing every two moths I check my blood. Now its 2.6
One of my oncologist advised me to stopped Lenalidomide temporarily for one month. The other one advised me just to continue with the lenalidomide but…[Read more]
I will check my blood test results and come back to you. In terms of length of time to take lenalidomide maintenance, this has been the subject of discussion between the experts. I think the latest idea is to continue it until progression, but their is an increased risk of additional cancers.
Hi Ned, good to hear that you are doing well, as am I. I havent heard of maintenance being changed to thalidomide after 12 months, and this hasnt been recommended to me by my consultant, so I continue on lenalidomide, now 2 years. I would ring Myeloma UK to ask Ellen Watters, the nurse whether this is protocol, and to generally discuss.
My…[Read more]
Thank you Jane, your response was very helpful and informative as usual. I have another question if you don’t mind.
Before having first SCT, my plasma cell was 5% due to induction therapy. However, my oncologist didn’t prescribe bone marrow aspiration 3 months post SCT for me. When I requested separately from two oncologists, they said no need…[Read more]
Hi Ned,
I hope you are continuing to do well.
I too had paraprotein apparent before SCT and did not have BMB after SCT. I was told that I had had a Complete Response to the SCT on the basis that paraproteins were not apparent in my blood. I’ve stayed in that state for almost 3 years now.
BMB in theory could detect minimal residual disease, o…[Read more]
Hi Jane,
I really appreciate you for taking time to write me and explain the reason for not having BMB after SCT. I’m fine and I hope you are also continuing to do well.
I think I told you earlier that I’m from Iran and I used to compare the general treatment protocol I received here, to the treatment that other myeloma patients from other…[Read more]