Initial Treatment

I elected to go on the Myeloma XI trial and was randomised to the Thalidomide arm as opposed to Revlimid, the newer drug. I started cyclophosamide, thalidomide and dexamathesone on 29 December 2010 and was only able to complete one full cycle and half of a second cycle a few weeks after the first cycle due to a severe skin rash during the first cycle which had to calm down before I commenced the second cycle at a lower dose of thalidomide but stopped taking it halfway through the second cycle due to too many side effects such as nerve pain in my back (yes unusual) and many other weird things going in. That meant I had to come off the Myeloma XI trial and I then had 2 cycles of PAD (Velcade, Doxerubicin and Dexamethasone) which brought me into normal range for my light chains and bone marrow less than 5% abnormal cells. Stem cell collection followed in June/July and I had an autologuous stem cell transplant on 1st September 2011. The procedure wasnt as bad as I expected and I had fairly mild side effects, the main ones being a sore mouth, some diarhorea and fatigue. I was out of hospital after 15/16 days and then began the process of recovery which took about 2 to 3 months, fatigue and depression being the biggest issues for me. I was told after my 100 day bone marrow biopsy that I had acheived a very good partial response. It was not complete because paraproteins were described as negligible as opposed to zero. I dont really understand the difference. However my consultant was advising that I had a reduced intensity allograft somethimes referred to as a mini allo because of my chromosome abnormalities  (translocation 11:14 and monosomy 13 deletion). She thought that I might not achieve a very long remission with just the auto transplant.

After much agonizing and some research I decided to go for it. The search for a donor was initiated and a potential match found on the register but upon further tests it was found that he was only a 7/10 match so we couldnt go ahead as that wasnt good enough. So I just got on with my recovery and enjoying my remission whilst it lasted.


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