Myeloma2016

  • myeloma2016 posted a new activity comment 5 months, 3 weeks ago

    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]

  • myeloma2016 posted a new activity comment 11 months ago

    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]

  • myeloma2016 posted a new activity comment 11 months ago

    Hello Kevin,
    Thanks indeed for clarification.
    I’m now 9 months post (ASCT). This is my first SCT. I was diagnosed when I was 42 years old, now 46. I have been on lenalidomide 10 mg( maintenance medication). So far everything seems ok except my WBC is slightly bellow 3000 (2600) due to lenalidomide.
    I know very well that every myeloma patient is d…[Read more]

  • myeloma2016 posted an update 11 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]

    • 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]

  • myeloma2016 posted an update 11 months ago

    @kevin hi Kevin. hope you are doing great. May I know how may years you are in remission after your 3rd ASCT?

    • Hello

      I have only had 2 SCT, first in 2007 and the second in 2013. Each of those with prior treatments gave me about 4 ½ years full remission. I am not sure if you get offered a 3rd SCT. My last relapse was in 2017 which I was treated with carfilzomib and dex and my treatment and course of maintenance treatment finished in Dec 2019. I am…[Read more]

      • Hello Kevin,
        Thanks indeed for clarification.
        I’m now 9 months post (ASCT). This is my first SCT. I was diagnosed when I was 42 years old, now 46. I have been on lenalidomide 10 mg( maintenance medication). So far everything seems ok except my WBC is slightly bellow 3000 (2600) due to lenalidomide.
        I know very well that every myeloma patient is d…[Read more]

  • @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.

  • Diagnosed with carpal tunnel syndrome on both hands 3 months after SCT

  • myeloma2016 became a registered member 1 year, 7 months ago