A decade of CML

[Guest guest]

I am amazed and delighted to find myself 10 years post dx today!!! On that day

therapy

options were very different. It was recommended I have a sibling BMT, try

interferon or an

unrelated BMT. None of my 5 siblings matched so we tried option 2, interferon.

I used IFN

for 6 months with no change. We then added Ara-C for the next 6 months, still

no

change. When I found out about the STI-571 trials in the US, I reached out and

found the

original online 'egroup' that the bulk of the first STI patients were using that

was started

by Rob. I managed to get a spot in the expanded access trial in NYC. It was an

expensive

proposition for me to go to the US for treatment but we were so excited about

the early

STI data. I was on Gleevec for 12 months with no change. A huge

disappointment. We

upped my dose and I developed Trisomy 8 which at that time was still not well

understood

with TKI patients. Happily it resolves within 6 months but I was both

intolerant and

unresponsive to Gleevec. I did try a vaccine trial in the US but that did not

help either. I

remained 100% Ph+ and showed other abnormal clones that resolved as well (del 9

and

small del 6 in addition to a repeat of +8). I started the dasatinib phase II

trial in Mar.

2005. It took 9 months to get stable on a dose, a small dose 40 mg. At first I

took it BID

but after 2 years switch to QD. I finally began showing a reduction in Ph level

for the first

time 8 years after being diagnosed!!! I also had the other abnormal clones come

and go

and MDS type cells appear.

My 29th bmb from Sept. 08 showed I am 92% normal with no additional abnormal

clones.

Plus the marrow looks more stable, with less MDS looking 'garbage'. Turns out

the

previous draw that showed Trisomy X was a lab error here in Ottawa. And I am

relieved to

know I didn't have the clone.

On Nov 2 I increased my Sprycel dose from 40 mg (which I have been taking since

Sept.

05) to 50 mg QD. We had hoped to increase it long ago but felt we should wait

until the

marrow was clearer and more stable and until my counts had 'wiggle' room so they

would

not crash too low and I might not require Neupogen. So far so good. I am

hoping this

might be the boost I need to achieve a full CCR. I will soon have to pay more

attention to

my PCR! It was at 1.2 log reduction on the Sept. draw. My FISH was 7%.

The past 10 years changed our lives completely. Though there have had many ups

and

downs, on the whole I would say we are happier, more appreciative and stronger

people

from it all. We had so much generous help and support from our family and

friends in

those long early years. We would not have made it through without them. We also

would

never have gotten through all this without the support and information from all

the

wonderful CMLers and caregivers who participate online. My children have grown

and are

now 24 and 21 respectively. My marriage has survived and is going strong. I

continue to

feel better on Sprycel than I ever did on any other treatment to date, I do

still have fatigue,

respiratory edema and some joint discomfort. I have not ever been able to return

to work

but over time we were able to downsize and adjust our lives accordingly.

I thank you all for helping me get to this date and look forward to celebrating

many more

anniversaries and to ushering in the cure for this disease which I believe will

happen in my

lifetime.

Peace, love and all good things,

dx 11/98

Ottawa, Canada