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masojp Total Reaction Points: 0
Hi, I'm new to this. I was diagnosed with high risk myeloma (I have 17p deletion) in April 2016 at 45 years old, I had initial induction chemo (Lenolidamide and dex) which was ok, other than dex made me hyper!. During this treatment I was told I'd need a transplant. I went to Oxford for this (BMT team are amazing) and was told I needed to autogolous SCT which they said I'd have in November 2016. Before this transplant I was then told that due to the high risk nature of my myeloma I'd need an allogenic transplant in March 2017 as they liklehood was that the myeloma would come back quickly. i had the autologous transplant which was ok really (worst thing for me was having pic line put in) and then in March 2017 I had the allogenic (tough being in hospital for 4 weeks but was ok really). I truly believed that I had been cured, as had no GvH, however last month (18 month post allo) during a regular BMT clinic checkup I told them I had pain in my rib which they x-ray'd and then did PET-CT scan on and my light chains have also gone up. I'm still awaiting results of bone marrow biospy but have been told I'l likely to start on lenolidamide next week for 3-6 months and then have a number of DLI''s.

Consultant is positive that treatment plan works well even after myeloma has returned after allo, has anybody been through similar? Would like to chat if so. many thanks

Comments

  • greg777 Total Reaction Points: 85
    Hi Masojp,
    I am really sorry to read your news. Having got myeloma and had a very similar treatment plan to you, your post struck a nerve. I was wondering if you have tried Myeloma UK? You might have more chance of finding someone in your position with that site being dedicated to myeloma?
    I am really hoping that the treatment plan works well for you. I know of many people who have had DLIs and it has worked well. Indeed, the consultant may want to do this to induce some graft vs host disease as that can be a signal the graft is fighting against the myeloma as well. I really hope you find that. Please keep us updated as to how you get along and I am sending you loads of warm wishes in the meantime.
    Greg
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