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12 Months of treatment

Posted by
06 Aug 2017

My experience of Chronic Myeloid Leukaemia after 12 months


Wow, that went fast! Its been 12 months since my CML diagnosis. 

Those first few weeks were such a blur but now everything seems to have steadied and I feel so happy with the progress made so far. Most of the feelings of anxiety and fear have disappeared and this is mainly because I am in a routine with my treatment and have great support from family and friends, I'm proud to say that my Mum still hasn't missed any of my appointments- those waiting rooms would be very boring without her! 

I now understand so much more about my Leukaemia and this has allowed me to relax, and just crack on with life - it literally has not stopped me from doing anything that I want, in this respect, I count myself very lucky. The only side effects are leg, toe and finger cramps and so just always make sure the tonic water is on hand. The hardest part for me at the moment is waiting for the results, I think it will be something that I eventually will get used to, I still get anxious in the hours before clinic and doubt il ever enjoy having blood taken either. 

As for my treatment, the daily Imatinib tablet is doing its job and I now only have 4 haematology clinic visits a year. I have also switched onto a generic drug and the only very minor negative I have found so far is that it doesn't taste very nice!

In the weeks between my appointments, I try to forget about the CML ( without forgetting to take the medication of course!) and just make sure that there are enough other distractions to keep my mind occupied.  My latest PCR blood result is 0.03, which I'm really pleased with and the aim now is to get that result to drop as low as possible and maybe eventually become undetectable. Ive also put on weight which I am also happy about. I understand that having CML is a marathon and not a sprint and the numbers and results may fluctuate from time to time, it's just something that I will get used to over time. 

Finally, a shout out to the CML support group Facebook group. I found the group immediately after diagnosis and used it for advice ever since. Straight away, I was asking questions and getting answers off people who are going through exactly what I'm going through. It's been invaluable to me and would certainly recommend it to any patients who are looking for any advice about anything CML related.

Take care