You are here

Latest Meeting.

Well, back from my latest discussion with my specialist and he is as yet not overly concerned. The reasoning is that the medication is still having an effect on my illness and he is of the opinion that if I have a mutation it is one that Nilotinib works with although it could be sub optimal.

I have changed a few things in my life(shift work etc) and diet and I appear over the last 3- 4 days got the side effects of back ache which I originally got when I changed from Glivec to Nilotinib in May 2013.

I know it sounds strange but I am wondering if the exclusion of coffee/tea and fizzy drinks from the diet and being stricter than ever with the timings of medication has given the tablets the chance to work again. My back ache is like a bone ache which I got originally when I first changed medication, this subsides after about 12 hours after taking the tablets and then reappears again an hour or so later.

So I am thinking positive and thanking the back ache. This side effect lasted about a week or so when I first started Nilotinib.

Anyway 3 weeks and another blood test and then approx. 3-4 weeks for the results. If the PCR levels have still increased then I am to have a mutation test and looking at a plasma level test and possibly a referral to a Proffessor in Liverpool who I have been told is very good in his field.(sorry cannot remember his name).

Will keep you posted.

Neil

My tabl

Hi Neil,
this is all good news and the fact that your doctor is obviously being proactive should make you feel confident.
I am sure that cutting out fizzy drinks and coffee etc from your diet will not do you any harm and may well be having some positive effects. Sugar in any form is not 'food'- at least not a nutritious food. Taking your medication regularly is probably the best thing you can do for obvious reasons.

Mutation and plasma level testing will also help clear the picture.

Professor Richard Clark is the lead at Liverpool and is a very well respected CML expert clinician.

Best of luck for the next PCR- no matter what I am sure you will find answers and a way forward.

Sandy

Does anyone know how long it takes for some results to be shown in PCR results?

Will a matter of 4 weeks allow any change to be shown, and how quickly can things change?

Anyone any experience of having consequetive blood test say 4 weeks apart which showed a difference?

Neil

Hi Neil,

It really depends on the individual case but yes, qPCR testing is very sensitive and can show significant (or not) changes in molecular levels of BCR-ABL. With CML things can change quite quickly but as I said that depends on the underlying 'picture' of the marrow environment and in your case and from what you have said re your qPCR results so far, I don't think you need to be overly concerned.

In my own case (and this was before a 2nd Gen TKI was available)I was a just above MMR at 0.5% BCR-ABL, but my results were beginning to show ups and downs... i.e on month up and the next back down again.... but the overall trend of the results showed a persistent rise. If I had drawn a graph - which I did- of my PCR results over 6 months from the first slightly raised result it would of showed peaks and troughs
but always below CCyR/1.5%.

It was initially puzzling, but eventually an imatinib resistant mutation (Y235H) was identified as the problem. At that time my only option was to have an SCT (lucky my brother was a good match) but should dasatinib have been available (clinical trials were imminent but not yet active) I would have changed therapy - and as history has shown us, I would have responded very well as that particular mutation is very well targeted by dasatinib.

Currently we are all in a much better place with far more choice of TKIs. Some of our members having tried all 5 and still responding well!.
Try not to worry, your doctor is doing all the right things.

Sandy