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 as I have three more months to go with lenalidomide.
have you been on thalidomide after SCT or before? and how has been the experience of taking the medication if u have using it?
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 thoughts, for what they are worth:
It may be to reduce the risk of secondary cancers for you?
Lenalidomide is known to be less difficult to tolerate than thalidomide for patients, fewer side effects, and to be 8% more effective than thalidomide (in induction doses) but there is the increased risk of secondary cancers esp over time. In maintenance doses it may be side effects are less common (as they are with lenalidomide)
This is one to ask your consultant what his/her thinking is, or whether this is NHS/NICE new policy, in which case it may be asking whether it is clinically the best decision for you, or whether it would be better for you to continue on lenalidomide if the doctor had a free rein.
You could ask for the research basis for the decision- Id be interested to hear if research has been done comparing continual len maintenance with len then thalidomide maintenance. I havent come across it. In USA other newer myeloma drugs are increasingly used for maintenance, drugs such as daratumumab kept back for relapse in UK.
Hope this is helpful
Jane
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 to do the test now. How do I know if I’m on full remission now and how much SCT was effective for me without bone marrow aspiration procedure?
Relying only on tests such as serum protein electrophoresis, free light chain, and beta2 macroglobulin,… which I do every three months sufficient to know if the treatment gave me full remission or not?
Ned
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, or hopefully minimal residual disease negativity (MRD -) down to different degrees of sensitivity, but ultimately all of us will still have a certain number of myeloma cells, even if they are dormant and not detectable by the most sensitive tests to date. Not all BMB are successful, there is quite a high rate of too few cells being extracted to give an accurate reading, not because of incompetence of the dr, but because cells are unequally distributed in the bone marrow. My consultant felt that this, the pain it causes patients, plus the lack of difference that it makes to NICE prescribed treatment plan, means that the BMB has no value for those of us whose other test results suggest myeloma is inactive, in my case not apparent in the blood.
I was told that once the regular tests I have (2 monthly) suggest myeloma is active again I will have another BMB.
I would have been interested to have known the results of a BMB after SCT, and had expected one, but it’s true that it wouldn’t have changed the treatment I’m having (lenalidomide maintenance).
Best wishes, Jane
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 countries received. My myeloma friends from New Zealand, Australia, have received BMB three months after SCT. I tot it is something that need to be done and my oncologist missed this part. I tot only the result from BMB indicates if I’m in full remission or partial remission. When I asked my Dr., to prescribe the test for me he said no need to have it but if you really insist to have BMB u may have. At the end I decided not to have the test.
Now I’m 15 months post SCT. Taking Lenalidomide 10 mg every day without rest,1/4 Warfarrin, one calcium pill a day, and an injection of Xgeva 120mg monthly. I also have my regular blood check every three months.
All the best
Ned