Tasigna

Hi Pat and welcome to this forum. This is really early days for you.... only day 4 on therapy, so it is not surprising that you feel you are still in denial about the whole thing. I think I can say that the vast majority of us have been in the same place as you are now. However, with time and some research (don't do too much of this at first) you will become more at ease. Maybe you will never accept the fact that you are one of the 'unlucky ones' but if you have to be part of what is a quite rare group of people with CML then it's probably one the more unique rare groups to belong to, and therefore because of the revolutionary treatment with TKIs that most of us can now access - at least those fortunate enough to live in countries with good and fair health systems (sic) - you can look forward to living out your normal life span... at least CML will not kill you.

If you clinical care is what it should be, you should be monitored with weekly blood tests at the beginning and you should expect to see a swift normalisation of your blood counts. This will be within the first 4-6 weeks depending on your personal profile (how high your white cell count is etc). After this your monthly blood tests will show how well you are responding to nilotinib- 

You might want to read about testing on the CML Facts page... here: http://www.cmlsupport.org.uk/section/testing-cml   

Depending on your response to nilotinib your clinician will test you blood samples by a molecular test call  qPCR ..... do take time to read our booklet on PCR testing which you can download from the link on our home page. http://www.cmlsupport.org.uk/sites/default/files/qrt-pcr-primer.pdf

This booklet may seem a little technical at first but after a bit of determined reading you will start to understand how your disease will be monitored and what results you will want to see.

You might also be interested in watching the following video (produced by one of the manufacturers of TKIs) link here: http://www.cmlsupport.org.uk/videos/milestones-cml-animation

If you have any questions at all then do not hesitate to ask our members on here, many of whom have a lot of knowledge and experience of living with CML.

Best wishes,

Sandy