2011 New Year Update

Well it has been a good 6 months since my last update to this blog and so much has happened in that time, including a move to a new blogging engine and url as Windows Live Spaces was being shut down.

So we should start with the good news first.  Back in September I became a father for the 2nd time as Noah Samuel Margel was born on the 16th September. After the initial diagnosis and advice not to try for more children whilst on Gleevec/imatinib we had thought our opportunity or more children was over.  This advice changed a couple of years back and with my good progression on the drugs we decided  to give it a try and we are absolutely over the moon to be proud parents again. Below are some pictures from the first 3 months.

Some recent pictures

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So things where going even better when shortly after in the beginning of October I received news from the hospital that my CML counts had gone down to there lowest ever of 0.047  so after 3.5 years i had finally hit what is called MMR (Major Molecular Response).  In layman’s terms this means that I had a 1000 fold reduction in the leukaemia cells in my blood, which is a good thing and a real milestone as I had hovered around that number for a couple of years. (http://www.cmlsupport.org.uk/faq_pcrresults).

It then came as a bit of a shock when a month later I received a call from the Hammersmith Hospital to say that they where concerned with the counts they had took from my October visit as they had gone up by quite a lot to 0.125 so they wanted me to come in for more tests.

Whilst there the doctors also informed me that they had also found a mutation in the leukaemia in my blood that was the cause of the increase.  This mutation is one that is resistant to the current drugs I am taking.  So that was an even bigger shock especially as a couple of months prior I was celebrating the MMR.  Anyway we discussed the various options:

  • Possible increase in my daily dose from 400mg to 600mg a day to see if the increase will keep it at bay
  • Move to one of 2 alternative drugs Nilotinib or Dasatanib and the pluses and minuses of each.

The 2nd option of moving to a different drug is down to my local PCT (Primary Care Trust) in Reading who give me the drugs.  So I left it with the doctors at both hospitals to sort out what is available.  If they will fund the change of drug I will hopefully move to Dastanib soon if not I guess I will have to try the increased dosage to see if that has an effect. 

I am going back to the Hammersmith for more additional blood tests in mid Jan so hopefully it will be resolved by then as I have not heard anything as yet.

One thing about moving to the new drugs is that they do not recommend to father children on them yet as there is no evidence one way or another as to any implications.  So it looks we have been fortunate to have this window where we have been able to have a healthy child whilst on Gleevec.

Rob

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