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Imatinib Resistance


After having a BCR-ABL around .02% for the last 3 years my last test through the hematologist three months ago had a blip up to .06%.  Normally I wouldn’t let this phase me as I know it’s the nature of cml but during a routine blood test with my family physician a month ago my white blood cell count was 7.1 up from my 6 year average of 4.5 - 5.  Again I understand this is within normal range but still trending higher from where I normally sit.  

I’ve been on imatinib for 6 years with minimal side effects but since I’m 37 I was hoping to be on it as long as possible before resistance since I know I need to prolong my TKI options given my age and I’m hoping for a long healthy life span.   

A few questions just so I'm well educated going into my appointment in a week.  I know this could be an over reaction and I'm still hoping for a lower number, but if my BCR-ABL is significantly higher I want to know what to ask for.

1) Would dasatinib be the next logical TKI and should I ask for a starting dose of 50mg instead of the more outdated initial dosage of 100mg?

2) Do you think my long term prognosis is still positive having to switch TKIs already only being 37?  I worry about running out of options if resistance keeps happening.

Personally I just see this as a blip nothing more. Wouldn’t worry about the panels they’re all in range. It prob means your body is working more as it should rather at the lower end of the wbc.

Perfectly understand the concern though. It’s hard because you have to ride that out 3 - 6 months to really know if they’re “rises”. May well be much lower on the next test. That’s the nature of the CML beast keeps you constantly on the seat of your pants.

If it were a rise because of resistance or a mutation you’d be tested to see what TKI works against a particular mutation. Most are covered some extremely rare ones are not. If you’re anything like me you’ll convince yourself you’ve got one of those lol.

Hi, I’m on nilotinib having switched last Summer from imatinib, which was causing my Neutrophils to dip too low. I achieved a major molecular response very quickly but actually my last reading was slightly higher than the one before (0.009% which rose to 0.013%). My haematologist didn’t bat an eyelid and said it was an excellent result. When I queried the fact that it had risen slightly, he said: “Even if there is slight change, it is in keeping with major molecular response..”

I’m sure it’s the same for you and maybe not even a “blip” as such. Easy to say, as I know that I will also worry about my next result. It would be interesting to know how many other people experience “blips” or whether it’s entirely normal to fluctuate a bit?

If you do need to change drugs, then nilotinib might be a good option. I have no side effects other than slight hair loss.

Best of luck, Sally 

Thanks so much Sally and Alex.  It’s nice to hear a couple other perspectives and hopefully my results are just in line with the nature of CML and it’s just one of those normal fluctuations!

My husband recently had a rise from 0.03 to 0.05 and we were really worries but the next one it was back to 0.03.I think some fluctuations are normal ,as my bil said not much difference in 5 in 10,000 and 3 in 10,000 it is essentially the same.