I took sprycel for several months had to change to gleevec. I'm now 2 years taking gleevec and experience severe leg cramps, bone pain, muscle weakness and pain and most recently severe memory loss, which caused mistakes in work. I'm in the process of going out on disability. I'm grateful I'm still alive but my qol is not good! Any feedback is very much appreciated!! God bless us all.
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Has anyone had to stop working due to tki side effects?
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My tki regime was the opposite to yours. Usual s/effects, severe cramp etc. But the final straw in work, was when they moved me further away from the toilets, which were on a different floor & required me to take a lift to get there. In waiting for said lift, I could not control my diarrhoea & soiled my self. I tried to clean myself as best I could but was ineffective & had to walk thru an office full of people, to return to my workplace, which was very embarrassing. I left work that day, never to return. I was able to get disability, not easily but there are a few websites that can advise you on your claim. I am in the UK.
Hi, yes I have given up work .When first diagnosed my Doc said my immune system would be low and was open to catching allsorts of bugs,so as I was working in a Pharmacy and meeting customers with sickness I handed in my notice.
I was so glad I did once I started on Imatinib because the diarrhoea and fatigue were so bad no way could I do my job .Like Belfez situation the toilets were 2 flights of stairs up and I wouldn’t have made it or had the energy to get there .Things are much much better now but at 61 no one is going to employ me now .I hope you feel better real soon ,Regards ,Denise.
I have all the same side effects and I'm sorry to say but the only way I cope is Percocet 3-4 times a day and I try and sleep 8-9 hours a night to heal. I do construction and have to work because I'm the main money for our household and I will not let our credit score or my house get behind. I'm in pain all day and every day. I do whatever I have to so that I work everyday and I'm up and down ladders all day and I walk about 10 miles a day or more depending on my job. CML has ruined my life. My Oncologist told me when I first went to see him that my life would be normal and I would live a normal life. He LIED massively . I used to workout 6 days a week plus my construction job 8-10 hours a day. Now I work 6-7 hours at the most and am so tired after 7 hours that I get home and just lay there and most the time I cry because my bones hurt very bad. Now some people do live totally normal but for those who are like me and have the bone pain and muscle burning and cramping you are not alone . I've tried magnesium and many other vitamins and herbs and everything I can read about and they help a little but nothing has enabled me to start lifting weights and my ankles hurt so bad after work that the treadmill is out of the question. I wish I had a desk job because I could probably go to the gym 3-4 days a week but not with a physical job.
But don't give up ! Fight every day ! Do everything you can to get better and eat healthy because it does make a difference .
My sister was diagnosed with CML back in 2010 when she was 46 and was immediately put on Tasigna and had a quick move to remission. However, as you all discuss she did have side effects from the treatment - most notably memory loss. However, the side effects were manageable and she could continue to function - working full time and being a good mom to her 2 boys. Last year, after the guidelines were changed, her Hematologist discontinued her therapy. This was a relief - as she was always worried about the high cost etc - plus we all hoped her memory would improve. Unfortunately, it has gotten worse and seems to be failing much faster and was recently diagnosed after Neurological evaluation with mild cognitive disorder (which is very worrisome now and in the future).
I have been googling about all of this - wondering if the Tasigna could have been the cause - as she is very young to have these problems. While there is not much on this topic, I was surprised to find trials where they are using Tasigna to actually treat Alzheimers. This was interesting to me and i found out that unlike older forms of medications - it seems like Tasigna actually crosses the blood brain barrier and therefore can alter the molecular balance in your brain. So i started wondering if the drug can alter things in a good way - could the converse be true and it also can harm. So i found this case study report of 3 patients - which sound just like my sisters symptoms. .
Cognitive dysfunction after withdrawal of tyrosine kinase inhibitor therapy in chronic myeloid leukaemia://onlinelibrary.wiley.com/doi/full/10.1002/ajh.24495
Otherwise, there is not a lot about this as folks are just now getting off the drug.
Wondering if others have experienced this and also if anyone has gone back on Tasigna and if the memory loss slows or improves?
Does anyone know of any studies about this?
I spoke to her Hematologist and he had heard nothing about this and is planning to reach out to Novartis Clinical Affairs.