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Can’t tolerate the TKIs!


I was diagnosed used at the beginning of Dec. Prescribed Imatinib that brought white cell count down dramatically but made me so unwell. Took a recommended break (doc) and had first dose of Dasutanib. Whole face blew up like a suet pudding! Discontinued that now waiting for Bosutinib
is it common to have to work through the various TKIs?


Hi Victoria,

I am surprised that your doctor is cycling you through different TKIs so quickly. You may well be intolerant to imatinib and dasatinib but 3 or 4 weeks is hardly giving you long enough to get your intolerance sorted out. After your break in therapy, in your case, it may have been a good idea to re-introduce either imatinib or dasatinib incrementally at a lower dose. This way it might have allowed your body to adjust to the particular TKI. Where are you being treated? Is your doctor an expert in treating CML?



HI Sandy

Thank you for your reply, he is a consultant haematologist and written a couple of research papers on TKIs but did say he would consult a ‘uk expert’ if the bosatanib doesn’t suit me. To be fair to him the Dasatanib reaction almost put me in A&E in the middle of the night but I resisted. I did have a break from the imatinib for a few days but still felt like death when I restarted. I have to say I am prepared to give that another go if I have to as it was very effective and that’s the main aim isn’t it. I have colleagues (drs) telling me I should go to UCH but want to see if I can get it right locally in Essex.

Within 2 months of being diagnosed and treated, i rather felt like death. Couldn't do much, was very sensitive.

One month in to tki treatment i wouldn't expect to feel great. I'm not a doc but if i was you I'd be asking for a lower dose imatanib, monitoring blood weekly to ensure the counts are ok and sticking with it for 2 months before making decisions.

While your body adapts, stay away from alcohol (because you've shown sensitivity) and drink 3l water per day and see if that helps. Take time to listen to your body, which tki did you feel less bad on? Try that one for longer.

I had a sub optimal result at 3 months, got switched to tasigna but never felt i needed that switch. Was switched back to imatanib (for a non side effect reason) and got to complete MMR in record time (10 months).

Docs have the experience and expertise but only you live in your body, all day , every day

Thanks Eva. I’m trying Bosutinib from today - just 100mg per day to start with. If this makes me unwell I will speak to doctor about trying imatinib again- diff times of day diff foods etc. 
keen to get it right and get on with my life so hoping this one is ‘the one’!!

I second Sandy's opinion that this is very fast to be cycling through TKI's.  They are initially intolerable for a lot of us because they are attacking the disease but most of the time patience and endurance will get you to the non-side effect side of things.  I was first given Dasatinib and was literally in tears from the joint/hip pain in addition to the headaches I would get.  After a couple of weeks I had less and less side effects until I had none.  Also keep in mind that there are only 5 available treatments so giving each one an honest effort before switching is important.  If your platelets or other blood counts drop below a safe level then that is another issue and should be addressed but pain and discomfort should be expected for a few weeks with any TKI I believe.

I wish the doctor had been more honest Conrad. I’ve learnt more on this forum!! I obvs couldn’t take the Dasatinib as that was a severe adverse reaction but should have persevered with the Imatinib!!

thanks for your insight.


I had both a relatively significant drop in neutrophils when I first started imatinib (which was very short lived though worried a doctor or two at the time) and a number of side effects: at first the most noticeable were upset stomach (gastro intestinal "turbulence"), significant cramps and nausea.  The side effects all reduced over time, and in the case of nausea I cured that by making sure I took my pill shortly after a proper meal.  By the time I stopped imatinib completely about 5 years later, my side effects had largely disappeared.  Interestingly perhaps when I was diagnosed the UK was conducting the SPIRIT 2 trial, and I was offered this: I would then have had either imatinib or dasatinib. I chose not to go on the trial and elect for imatinib on the basis it was a known entity and if it didn't work, I could try a second generation. I've never regretted that decision as imatinib worked a treat for me (though I was very glad I was able to stop in due course....).

Obviously if the side effects are really bad and don't reduce over time, there may well be an intolerance issue but for many people, things do indeed improve over time.

Good luck


Thanks Richard. It’s so good to share experience- very reassuring. I have everything crossed for this drug though always get quite anxious just before I have to take one but trying to stay positive!!