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Imatinib advice

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Hi I have been on Imatinib since I got diagnosed 9 months ago. I am managing the usual side effects of fatigue, rash and joint pain.

However, I am suffering from ongoing swelling around my eyes. My eyelids and under eyes are swollen caused by water retention. I sometimes take tablets to reduce water retention but don’t want to take them on a regular basis. 
 

the swelling seems to be getting worse in the last few months. I am careful with my diet and take supplements. My work involves looking at a screen and I find it hard focusing with my eyelids feeling so heavy and never feeling fully awake and sometimes suffer with blurred vision that comes and goes. 
 

I spoke with my consultant and currently his reluctant to take me off imatinib as my results are good but he will review this once I have taken imatinib for at least 12 months. 
 

I am also reluctant in changing as worried I might get worse side effects on new medication but my eye issue is getting me down. 
 

I’m keen for any advice and would like to know if anyone had the same situation as me and was taken off imatinib. If so what medication was suggested and where there any side effects. 

Evie, what have your PCR readings been?  If low enough, reducing your Imatinib dosage is far and away the best solution for lessening the side-effects of any TKI.  Other than that, splitting the 400mg tablets and taking 200mgs in the morning and 200mgs in the evening may help.

Buzz

Hi Evie,I too had this problem with very puffy eyes and the dreadful rash and stomach problems.I didn't look or feel like me.I changed to Dasatinib 50 mg and everything went away pretty quickly .You have a few days of mild headaches when you wake up In the morning,because I take it before bed ,but by the time you have had your breakfast it's gone .I know it's scary changing TKI but it's certainly better for me .Good luck , Denise

Hi

Thank you for your response. My BCR/ABL1 results in October were 0.324%

so not sure if I’m at the stage that I could reduce dosage.

Hi

Thank you for your response. That is helpful to know. Was the side effects the main reason for you changing TKI

Hi, no ,Doc said Imatinib had stopped working because my BRC ABL had raised ,but it hadn’t stopped ,I was on antibiotics and that was the reason for the rise .I said I would like to wait and see the results of my next blood test and see if it came back down after stopping but she insisted I change to Dasatinib so I did .That blood test did come back lower than it was before the antibiotics and she insisted I have another bone marrow test too ,which was normal.So I wasn’t happy at all with my doctor.So now I make all the decisions of what dose I take and when to reduce then tell her what I have done.But I am glad I changed to Dasatinib for a bit of normality .I have been undetected now for about 3 years .Had CML for 5 years .Any questions you have ,please ask I don’t mind ,if I can help .Denise.

Thanks Denise. That’s good to hear you have been undetected for 3 years even with changing tki and good to hear side effects went once you changed to dasatinib. 

I am going to speak to my consultant about dasatinib to see can I look to changing medication once I reach 12 months of taking imatinib in April 2022. 
 

thanks again for your help 

Evie, at any reading below 1.0 CML presents no health threat to the CML patient. Your PCR reading of 0.324% at six months is exceptional.   Imatinib is working very well for you.  Please let us know your January 9 month PCR result.  Thanks in advance.

Evie, here is another data point. I had the same eye swelling and a few other unpleasant side effects. Last May I switched from 400 mg imatinib to 50 mg dasatinib. The eye swelling went way down and I feel much better in all ways. Diagnosed April 2017. Last pcr test 0.047 in September. Good luck!!

Thank you for response. Did you switch due to  your side effects?

I have had the swelling since I started imatinib but it has got worse in the last couple of months and i also have a very bad rash on my face and around eyes for the last few weeks. 

I’m concerned that side effects are getting worse when i’m 9 months into treatment. So it’s really helpful to hear that your swelling went when you stopped imatinib. 

Yes I did switch due to side effects. In addition, I talked with my hematologist about wanting to try TFR someday and he suggested I might get a more robust response with dasatinib than I had been getting during six years of imatinib. So far I haven’t achieved a deep enough response but hoping for the best. I hope you can get some relief! That sounds very unpleasant. Good luck.

Evie, I was diagnosed in 2008 and was only on imatinib for 9 months due to liver toxicity. However, I did have the "frog eyes" and some other unpleasant side effects - leg, foot and hand cramps and what we who were taking it at the time lovingly referred to as "sharts" . That was great fun!

I switched to dasatinib and did quite well over the years but I had a couple episodes of pleural effusion, the last one I could not get rid of. At the time I maintained CMR on a very low dose of dasatinib, 25mg alternating days. If dasatinib is going to work for you you should do well starting out at 50mg. daily.

Another option for you could be 150mg nilotinib twice daily. That is, again, half the normal starting dose. When I switched a couple of years ago I maintained CMR at that dosage and I'm now down to 150mg once per day.

It is your quality of life, not your docs, and if you aren't happy with imatinib and the way it makes you feel and look there are too many other options for you not to insist on a change. Good luck!

Thank you. It’s good to hear that your side effects got better once you switched over to another tki. 

I’m grateful that imatinib is working but concerned with the side effects getting worse instead of improving.

After hearing from you and others on this forum, it has given me the convenience to push for options with my consultant