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CML

Geoff1
Posted by

Hi Taking Bosulif and dont feel  to good as in side affects , cramps and mussel pain and worry about the simple things in life , that never bothered me before, i can only imagine that this will get worse , how Long from Diagnosis do you last with CML, 

Please Advise, regards G

Caroline- Macmillan

Hi Geoff,

Thanks for your question. The cramps and muscle pains that are bothering you are known side effects of the Bosulif but your consultant can give you medication to help with the cramps. He/she can also dose reduce for a little while and then increase when you become more tolerant.

The muscle pain is also a known side effects and everyone copes differently. Exercise, aromatherapy, sports massage and pain relief are all ways that people have managed some relief. Ask your CNS at your unit what services are available locally that you could be referred to.

The emotional aspect i.e. the worrying is understandable and maybe some counselling would help? Again, ask your CNS to refer you locally.

As for prognosis, there have been lots of studies carried out over the past few years. The Swedish cancer registry is one of the best registers of cancer in the world. Everyone who is diagnosed with a cancer in Sweden, is logged on a register with their diagnosis. according to the Swedes, CML life expectancy is now nearly the same as normal life expectancy, providing you achieve a remission. I have enclosed a link with a summary of such a study .

When I was a baby nurse, most CML patients died within 5 years so these drugs have made a MASSIVE difference to people all over the world. Gleevec (Imatinib) even made the cover of TIME magazine!! We now have a whole family of drugs that target CML so please try not to despair, if Bosulif doesn't agree with you, there are other treatments available.

I hope this helps.

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.