PCR up again !!!

Hi Ali 

After nearly 9 years living with CML I guess I just don't ever know whats next !!!   At the moment I am on 300g Nilotinib. 200 one day 100 the next. I feel Ok on it mostly, pain, rashes and exhustion as with all TKIs plus some really bad problems with insommnia, but worst of all it has taken me into raised cholestrol at high level and impaired glucose tolerance, edge of diabetes.  These are the reasons for reduction in dose.

Now the PCT has said yes to Dasatinib the hospital is weighing up options.  I had to come off Gleevec because of terrible oedema, and that of course is one of the problems with Dasatinib.

It seems impossible for me to hold a zero, although I know how lucky I am to get low PCRs i'ts a constant source of concern.  One is that an 'unidentified' mutant might be lurking.  Sounds like the title to a Sci Fi story. The Lurking Mutant - perhaps I will pen the story ?

My problems are nothing like as difficult to deal with as yours, and I am thinking of you as you approach your next treatment options.

I guess we just need to hold on to the fact we do have options these days, even if some of them seem horrid at least they are there in the 'box of CML tricks'.

ATB

Pennie.

Sorry to hear about the latest result . Its massively frustrating for you I know. I've a bit of knowledge about slipping in and out of PCRU over the last 9 months  -  0,004, PCRU, 0.009, PCRU and the last reading at end of July of 0.006. ( and now awaiting retest result) It's such a great feeling when you get a good PCR result and you can try to forget about CML for a period . As you say the good news for you is that 0.015 is still low and I guess the key will be the trend over 2/3 tests. It sounds from vickiep post that Dasatinib for her doesn't result in so much water retention, so good that you now have that option to try.

Hope to see you at next Kings patient group

Regards

Andy