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Currently diagnosed CML

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Hello everyone
I have currently started CML treatment and facing deadly bone pain
What should i do
Can i take ibuprofen because paracetamol is not working
Waiting for replies
Regards
Nazi

Hi Nazia,

Bone pain is quite common with early treatment with CML - can you describe your pain? Is it a dull ache, or more sharp? Mostly, this goes away as you respond to treatment but of course is very painful while it goes on. 

Ibuprofen is an anti-inflammatory and as such is not likely to help much with bone pain.

I had quite bad bone pain early in my treatment. My doctor prescribed me codeine phosphate because it is a strong painkiller but it is also easily metabolised by the liver.

David.

Nazia which CML medication are you taking?

Thanks for reply
Am taking imatinib 400 mg daily dose

Thanks david
My bone pain and muscular pain in legs is more sharp some time
My oncologist allowed me to only take paracetamol but is not working much

Hi David
Will you pls tell me about codeine phosphate

Well, it’s just plain old codeine - a simple opiate. It works well on pain. Addiction problems with opiates happen when taken for a long time, and in the absence of actual pain to deal with. I just took as little as I could took the edge off the pain. Actually, 5 years later I think I still have half a packet in my medicine box!

David. 

Hi again Nazia,

Is the pain constant, or does it come and go? When I had sharp pains at the start of my treatment, they would be not too bad and then suddenly for a very short time extremely painful. The kind of pain you wouldn’t want to get if you were crossing the road at the time!

In the end, though the codeine took the edge off the pain, I switched to dasatinib which eliminated those pains totally. 

David. 

Thanks David,
My pain is constant not as cramps
Its nor too sharp neither mild it is moderate but keeps me restless
I really want to get rid off it because it has disturbed my whole routine life
Regards
Nazia

Don't just accept the suffering ... if it continues, or gets worse talk to your doctor about trying a different TKI.

In the meantime, experiment with heat (hot water bottles, hot bath) or cold (ice pack or other cooling gels you can get at a pharmacy) to see if that can help. Some people find that magnesium creams or oils on their skin can help with muscle cramp which might contribute to the kind of pain you feel.

David.

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