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After 2 years on Glivec my counts are starting to go up

Dear friends,


I have been on Glivec since Jan 2008. After one year on it I achieved CMR with BCR/GUS ~ 0.003% as measured in peripheral blood. On October 2009 my counts were at BCR/GUS ~ 0.007%. Then on December 2009 I got a bone marrow test with BCR/G6PDH of 0.03%. And now on 11 March I got a value of 0.045%. My doctor beieve that the best alternative is to switch to Sprycel, which is what I am planning to do. He also requested a mutation test to see if I've got the 351 mutation. I know that some of you have experinced this already and your advice will be welcome.

One of my doubts is that previous to the bone marrow (BM) aspirate of December 2009, the last aspirate that had a measurement is from May 2008 which gave 4%. Then I was only checked by peripheral blood. The history of measurements is as follow:

22 Jan 2008  123% (BCR-ABL/ABL - BM aspirate - Lab 1) Diagnosis

12 May 2008     4% (BCR-ABL/ABL - BM aspirate - Lab 1)

26 Aug 2008   0.0027% (ABL/GUS - per. blood - Lab 2)

25 May 2009 0.0072% (ABL/GUS - per. blood - Lab 2)

9 Sep 2009 0.0033% (ABL/GUS - per. blood - Lab 2)

23 Dec 2009 0.030% (BCR-ABL/G6PDH - BM aspirate - Lab 3)

11 March 2009 0.045% (BCR-ABL/G6PDH - BM aspirate - Lab 3)

So the above measurements have been done in different labs with different techniques. I do trust the most Lab 1 and Lab 3. Should I request one more bone marrow aspirate test before deciding to switch? I ask because Glivec has been really gentle to me, with very few side effects. But my doctor advices that early action is important.

I actually have another question, perhaps for Sandy: When should one consider a mini transplant? I am 52 and I am not getting any younger. I have 4 blood brothers who are not getting any younger either, actualy I am the youngest. When should one look for a compatible sibling? My doctor told me that the transplant is a last resource, and that it is not time yet to dicuss it.

 

Thank you  for your help with this matter.

 

Cheers,

 

Fernando

Whats your glivec dose?

And I can see no reason why you cant get your brothers tissue type done now as  a reserve plan you need to know your options,and your lucky to have 4 brothers, the odds for a match is 1 in 4.

Dear Fernando,

I agree with Michael that it does no harm to have your brothers tested to see if they match. Mine were tested immediately on diagnosis (on 1999 pre Glivec) and my younger brother was a good match and donated stem cells immediately. These cells were kept in the 'fridge' until I needed them, which was not until 2003 because I was treated with imatinib in clinical trial and responded well for over 3 years.

As to your pcr's... I tend to agree with you that you should try to make some sense of the differences by using just one lab. That way you can be sure of whether the 'trend' is going up or down or is stable.

If you are happy with imatinib then I cannot see why you should be rushed into making a decision to change therapy based on differences on results made between different labs especially as there are 3 of them!

I would always try to stay with one lab... that way you know where you are. You should also have at least 3 results to compare (all from the same lab) otherwise you cannot make an informed decision. ... which is what it is all about after all.

I hope this helps... best of luck with sorting out the lab confusion.

Sandy

Thank you Sandy and Michael for your feedback. My daily dose is 400mg. Because of other health issues my hematologist and I agreed to wait for a month before switching medicine. At that time I will request another BM aspirate PCR from Lab 3. On the meantime I will talk to my brothers and sisters about being tested. Is it painful? Do they need a BM aspirate or is it just a blood test? Gracias! Fernando.

Fernando,

Your brothers and sisters just need a simple blood sample for the tissue typing,and you could try a higher dose prehap 600mg of Glivec you might be below optimum dosege at the moment