5 years living with Leukaemia

Well I guess the title should read 5 years living with Leukaemia and knowing it.

This anniversary had nearly passed me by until a little bell went off in the back of my head.  I actually had to go back to my very first blog post to confirm that it was the 12th of December 2006 that I was diagnosed with CML.  Wow that was 5 years ago, so much has happened since then, mainly good that it is really hard to actually recall my feelings and state of mind those first few weeks.  At the time I had no real concept or thoughts about would I live for 5 years or what would live look like in 5 years time, everything was very much a short term view, the next hospital appointment, the next set if test results and the worrying in-between.

But now I can reflect a little and look back (and forwards) over the last 5 years to see how much of life has changed, and in some ways so much has stayed the same.  CML is part of my life of course but it is not the defining thing, or the all consuming element that was driving all parts of my and my families lives.

So a little update (something lacking on here) from me and how things are going.

My PCR is down to its lowest ever 0.037%  which is god news.  The dasatanib seems to be working and I tolerate it much better than imatinib with virtually no side effects.  The only slightly discomforting side effects are:

  • dead arms in my sleep that regularly wake me up, but I generally fall back to sleep quite easily.
  • fingers that seem to loose all the blood when they get cold, which of course is happening all the more during the winter.
  • and some at times painful acne in strange places like my legs and chest.

But all things I can live with.

Also being on the newer drug has one great side benefit in that I have been able to exercise more as I  don’t experience some of the problems I used to.  So I have over the last few months been doing a lot of running, more running in fact than I have ever done.  You can track my activities on RunKeeper (http://runkeeper.com/user/robmargel/profile).  This additional exercise and I think in some ways my bodies reaction to how it deals with the new drugs have meant I have also lost 10Kgs which has made me feel very positive, as well having to buy a new suit! (well it had been 10 years since I bought it to get married in)

Since my last update in March so much has been going on and below are a selection of them:

WP_000052WP_000060WP_000040WP_000095WP_000097WP_000079WP_000112WP_000127WP_000140

So here is to another 5 years (at least)

Rob

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