6 months since my last post, it’s time to update.
This week I got back the results from my April bone marrow biopsy. There have been no Leukaemia affected blood cells detected since January. But the important tests are the bi monthly bone marrow ones.
At diagnosis 85% of my blood producing stem cells were affected by the mutation which causes my type of Leukaemia. By December it was 3%. Unfortunately, between Liverpool Royal, and Guys, in London, they lost my February sample, so I’m running 8 weeks behind on results.
April sample result was no detectable mutated leukaemic stem cells. I need clear blood, haematological remission, and 3 undetectable bone marrow results, molecular remission, to be considered in remission. Next samples 31 May and last week July.
Im still receiving the experimental trial protocol involving arsenic trioxide infusions. Few side effects, extreme tiredness, my hair is totally white and I’ve got baby curls, but worst is peripheral neuropathy in hands and feet. Permanent pins & needles, total numbness in my toes and soles of my feet.
Mobilty is impaired and restricted. It may be permanent.
But I’m getting back to some normality. Went to Dublin over bank holiday weekend, theatre trip, and I’ve chaired a couple tribunals with two more this coming week.
Treatment continues until 6 July, then rehabilitation physio and 3 monthly, 6 monthly and, after 5 years, annual bone marrow biopsy follow ups for life.
All on the NHS. Truly a marvellous resource. My treatment will have cost £250,000 plus. Each chemo dose costs the pharmacy £1000, and I’ll have had 99 doses by July.