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New to Imatinib

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Hi,

I am diagnosed with CML and new to imatinib—my 4th day today. I started with nilotinib but lasted only for 4 days as I was having chest pain consistently 2hrs after taking the medicine. My doctor asked me stop taking it and switched to imatinib. This time I have a very bad pain in the back and can’t figure out if it’s my spine and I gnash my teeth with the severe pain. I take ibuprofen for pain killer but takes a bit of time before pain subsides. I wonder if it is normal to have so much pain with these medicines.

Hi sorry to hear of your diagnosis. Yes those pains are “normal” mine subsided after a few months, but some people do have persistent pain. Hydration helps me a lot at least 2 litres of water a day. And a hot bath most days does the trick for me personally. Give the meds some time a lot is going on in the body especially in the earlier days.

All the best

Hi--I also found that a lot of my early management of having CML was anxiety. There are side effects, and I have had some major ones. But I also found that they were certainly worse when I was anxious. I have learned mindful meditation. Hydration and warm baths are good. I use soothing sleep sounds on my Alexa device because I find that nights are always difficult. My understanding of the bone pain is that it is both the med and management of the disease as the med works to normalize the blood cells, etc.  Hang in there and try to persist. It will get better. 

 

I 100% agree that anxiety can exacerbate symptoms and cause new ones. That’s been my experience and I too practice mindfulness and meditation it works wonders for me most of the time. There are times when things get harder and that correlates with my anxiety and stress. And I am starting also to think that my fatigue is psychological rather than just TKI/CML related. The mind is powerful underestimated component for all things especially physical symptoms!

Hi, I am new to imatinib for three months now and also get bone pain, but mostly in the lower legs around the shins which is manageable around the house but really comes on badly after only a short walk. I take paracetamol only when needed which helps but hopefully over the coming months it may improve a bit more. Some of the posts I read indicate that the side effects like this typically improve after three months but I am not so hopeful just yet ! My consultant told me it could take up to one year to see any meaningful improvement.

I find this is a really good forum for comparing different outcomes.

Thanks

5 years on imatinib now and no side effects. After the first 4 months all discomforts disappeared. The medication is killing cancer cells and your body is full of dead cancer cells. Your going to experience discomfort during this process.

Many Thanks, your story definitely gives new CMLers like me hope. I know I'm lucky to have great treatment available and to be alive. For many like me, I think a lot of the mental drain in the early days has to do with the shock of suddenly going from being fit (ish!) to adjusting to a very different existence.