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Imatinib or not?

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Good morning everyone

I have a bit of a dilemma and would be very grateful for any advice from the wonderful members here - sorry, it seems that I'm forever asking for help!

Currently I'm on dasatinib 100mg, but I'm having a single, frightening side effect: rapidly enlarging lymph nodes on the right hand side of my neck.  One is so large it is clearly visible and stands out quite some distance from my neck.  The haematologist has monitored this carefully and has tested for all sorts of other conditions, including lymphoma, and all is negative.  Consequently I am changing to imatinib on 1 May.

This would ordinarily be fine, except that my latest PCR test has shown a slight rise in BCR-Abl from 0.05% to 0.08%.  I am a very slow responder and took two years to reach MMR, and now the increase concerns me - even though 0.03 doesn't look like a lot, it is a 60% increase.  My question is whether I should push to be changed to nilotinib instead of imatinib?  I am not keen on the fasting regime associated with nilotinib, but I am worried that the imatinib isn't strong enough to maintain my BCR-Abl at such a low level.

Any advice would be greatly appreciated!

Thank you so much to everyone on this site.  Without you, I think I would be neurotic with worry.

Best wishes

Martin 

Hi Martin, 

The differences in those results are well within statistical margins of error. I know you're seeing the rise and a 60% figure and worry, but I always think it's worth looking at this as raw numbers rather than a percentage.

0.05% is 5 in 10,000. 0.08% is 8 in 10,000. When looked at like that, I think it's clearer that it's a really insignificant rise. Just three in ten-thousand.

Imatinib is a great drug, and there's every reason to be confident that it will help maintain your current PCR levels and who knows, perhaps even reduce them. I don't think I'd be too keen on the nilotinib fasting regime either.

David.

Hi David

Thank you, as always, for responding so quickly and for helping to put my mind at rest regarding the efficacy of imatinib.  You have no idea how much it helps me to read your messages - the CML world can be quite lonely, especially here in South Africa where we have a major shortage of haematologists!  A leading one recently retired, and my own doctor suddenly inherited all his patients...

I will take the advice, stop worrying and start the imatinib on 1 May.

Best wishes

Martin

Hey, martin! I wouldn't worry about the pcr result - is within the margin of error and still MMR, so you had a confirmed MMR! About the change to glivec, if i were you, i would wait some more time. At least a year, maybe a year and a half, into MMR to make the change. But that's me. I know a guy how was also slow on tasigna and after 6 months into mmr made a change to imatinib and there was no problem, same response. Maybe you can have pcrs every month for six months to see how's things are going. About the change in pcr, i have to make a point. What david said about 4 in 10.000 and 7 in 10.000 is only applied for raw results - not IS. When we talk about IS results the variation could be even lower. it will depends on the convertion factor. i.e. sometimes only one more cell can cause big variation. My lab has a convertion factor of 1.98, so, if they find 4 in 10.000 the IS result would be 0.07, if they find 5 in 10.000 the IS result would be 0.09. and that variation would be no reason for worry. Good luck, mate! you deserve some relaxing time. Enjoy your MMR!

Hey Lucas! 

Great to hear from you, my friend.  Thank you for your encouraging comment - I would also love to wait until next year before making the change, but unfortunately my doctor says the change is urgent because of this lymph node swelling. Apparently this happens in a minority of patients on dasatinib - there have been less than 20 cases reported in the world so far - and the swelling can develop into lymphoma, so I have to change soon!

You really gave me some interesting things to think about - I never thought of the big role that the conversion factor can play and your explanation makes a lot of sense.  From what I remember, my lab's conversion factor is around 1.3 so that means that finding only two additional cells can inflate the BCR-Abl ratio.  That makes a lot of sense and is good news for me!

I am so glad that things are going well with you, Lucas - I remember how much trouble you had with slow responses and mutation tests yourself, and it makes me so happy that it turned out well for you.  One day I will visit Brazil - it is a World Cup year and I'm sure your whole country is excited.  Tite's men look like favourites to lift the trophy the way they played in the South American qualifiers!

Best wishes from South Africa

Martin