Hi John,
First let me say that I agree with all that Richard says in his post. Side effects can be an issue for some and a non issue for others... i.e they can and do manage to live with them of the long term. As Richard said- it is an individual thing, both in terms of the type and the severity of any side effect. However, in the first months of therapy you do need to learn to everything you can to stop being overwhelmed, both emotionally and from physical effects of treatment. The good news in your case is that you had a very sizeable drop in your Ph+ cell count within 3 weeks- if I have understood you correctly, a PCR test showed a drop of 80%? Did your doctor give you a cytogenetics test result also? Or possibly a FISH test result? These tests are normally used to gauge how you are responding in the first stages of therapy. This is because at higher levels of disease they are more accurate than PCR- which comes into its own when the Ph+ cell population gets down to very low levels 1% or less.
Nevertheless, you have obviously responded well- clinically speaking.
It is very good that you have a referral to Newcastle and you will probably see Prof. Steven O'brien who is the lead CML expert there. They are pretty much at the forefront of CML therapy along with other centres such as, Leeds, Liverpool, Nottingham, Birmingham, Hammersmith and Kings both in London, as well as others including Glasgow in Scotland.
From your tests at 3 months you will be able to assess how 'optimal' your clinical response to imatinib is. Should a PCR result at 3 months show the Ph+ population has reduce to less that 10% then you will be considered and 'optimal' responder and can expect a complete cytogenetic response (1%) by 6 months. It should be said that others will and do take longer to reach CCyR and hopefully see the levels of Bcr/Abl % down even further to a deeper molecular response (pref. a 3 log reduction or 0.1% Bcr/Abl).
Regarding your side effects. From what you say your kneed joint and lower back pain might well be connected and are not necessarily imatinib related. Have you considered a visit to an osteopath or chiropractor as this might be a misalignment of your spine?
I am sure the Newcastle team will help you sort things out and might well suggest an alternative explanation for the back pain. Diagnosis for most comes 'out of the blue' and causes such a lot of stress, which can manifest in other seemingly unrelated symptoms.
It is always a complicated time, but it will get better. Your blood counts look like imatinib is doing what it is designed to do, your body needs to adjust to getting rid of all those abnormal cells and find its way back to normal cell production. Your HGB might be a little on the low side which is pretty classic with imatinib and might account for you feeling more tired that you are used to.
Take some time and allow yourself to rest, both physically as well as psychologically.
Best wishes,
Sandy