side effects of imatinib

Dear Gary,

First let me say that you should not view your concerns/experiences at 'moaning'. You have every right to expect the best treatment and care. 

Secondly, if you have not already done so, please consider registering to attend the Uk CML patient/carer one day conference in Cardiff on Saturday 12th November. For all of us- and especially for those who are newly diagnosed- this conference is invaluable and is actually unique, certainly within Europe.

Your experience of care at your clinic. I understand your frustration as you describe your hospital visits. Waiting times are a big issue for most of us. When I go for my 6 monthly consultation I expect to wait at least 1 hour. I also see a differenct consultant each time but that is OK for me as I know that my case is not considered difficult or requiring frequent monitoring any more (given that it was so difficult at diagnosis)- so I quite like being in that position.  However, I also know that my clinic (Hammersmith) is a 'well oiled machine' and have a system that would immediately flag up should my pcr's show there was a problem, so I remain confident that my care is good.

From what you say, there does not seem to be an opportunity for you to speak about your side effects and how they are impacting on your life. I assume you have been treated with imatinib (Glivec) at 400mg for the last 18 months. Do you have the rate of cytogenetic response over that time? i.e at 6 months and 12 months? As you metion that you are hoping to see bcr/abl 'remission level' this time. By this do you mean 'complete remission'- CCyR?

I am asking this because- given the side effect profile you describe- it might be that you should consider a change of therapy to one of the other TKI's. The side effects of either one are very different (in most cases better) that imatinib. Also,  if you have not acheived CCyR by 18 months, this might also be a factor to change.

Of course some people do take longer to reach CCyR with standard dose imatinib, but generally you would want to see a complete cytogenetic response within 12 months and then further down to a molecular response over subsequent months.

I suggest you take the 'bull by the horns' and insist that the doctor you see at your next clinic visit has time to listen to your concerns regarding your side effects. It sounds that you are within the 'intolerance' to imatinib group and need to have at least a discussion about changing therapy.

Good luck for a  reduction in bcr/abl levels to CCyR and please update us with that latest result.

best wishes,

Sandy

Hi Sandy

Thank you for your post. i found your comments helpful and will take on board what you suggest. I was initially on 400mg but increased this to 600mg to see if it had the desired effect which it seems to have. My recent PCR results showed 0.3 with my graph steadily dropping and hopefully on wednesday will be told it's down to remission levels. Does anyone else know the next stage i can expect if this is the good news? do i just stop the imatinib or reduce it?

Dear Gary,

Your pcr result at 0.3% already shows you are already in 'complete cytogenetic response' (CCyR is usually when you reach 1.5%)

The next goal will be to add more zeros after the decimal point... as many as you can... and that is called a molecular response MR or major molecular response- MMR. Complete molecular response - CMR,  is harder to acheive but some consider that they have acheived it- but it depends on the lab (and how sensitive their pcr machine is). 

So if your next pcr (taken from blood given 6 weeks ago?) shows at least another zero (0.03) you are on track- although you might well see 2 or even more zeros.

However,  even if your levels have dropped to 0.000% you still cannot consider stopping therapy with imatinib (or any other TKI) until your pcr results have lots of zeros and are stable for least 2 years.

This disease does not go away with TKI therapy, but getting it to very low molecular levels is the goal. That is why the long term side effect profile is important because although you have a good clinical response to 600mg imatinib (and you would not be advised to reduce the dose) the side effects you suffer sound quite hard to tolerate. Hence my suggestion that you talk to the consultant about a change in therapy due to intolerance, sooner rather than later. 

Best wishes,

Sandy

I've been for my 3-monthly blood test and prescription this morning. All OK with that. The consultant tells me there's an upcoming clinical trial to take people like myself with 5-years+ remission off the Imatinib to see what happens. There is a school of thought that the disease may have 'gone away'. I don't know what I'll say if I'm asked to take part.

Incidentally I've had two side effects from day 1 - fatigue and humungous night sweats.

Terry

Hi Terry,

I'm currently taking part in the STIM trial in France.

I started my Glivec in July 2004 & stopped it on May 3rd of this year.

I was PCR U for 4 years before stopping apart from 2 minor positives in 2007 & 2008.

Here in France, we get tested monthly for a year (we see our dr every 2 months)

My first 2 PCR's after stopping were nagative, my 3rd was slightly positive with 0.003 & my 4th was 0.002 (but tested on a very sensitive method, 7X more sensitive than the method they used when I wasn't on STIM)

My next PCR is on Sept 22nd - International CML awareness day!!

My doctor is happy for me to remain off Glivec as long as my log reduction remains at more than 4.

As for side effects - to be honest I coped with Glivec very well but I no longer have puffy eyes, have no diarrhea & have been able to get a lovely tan this summer, just from walking around outside, everyone keeps telling me I look very healthy.

hope this helps, don't hesitate if you've got more questions,

Barbara

Dear Gary,

I remember these side effects very well! I suffered with them when i first started taking glivec. But after a few months i got

used to them and after a few years i did not notice any of it anymore. What worked great for me, was taking glivec before

going to sleep and then going for a run in the morning. Seriouly, after that i felt on top of the world!

I had to give up glivec when i got pregnant and am now on dasatinib, stronger side effects for me, but already, after a

few months seem to ease.

Glivec was like a good old friend and i found it really hard to let go!

All the best,

Claudia