Hi, all -- I haven't posted on here lately because I am on so many 
lists, not just CML, and frankly, life has been super busy!  Tracey, 
thanks for remembering me...

A brief history/upadate:  I was dx'd 5/13/02 and contrary to most on 
the list, started 10 miu IFN daily.  At that point, there wasn't a 
lot of long-term Gleevec data, and IFN offered the possibility of 
long-term drug-free survival for a lucky few.  Got to zero by PB-
FISH on IFN after nine months.  Had three consecutive BMBs where we 
couldn't get results, but the FISH was still zero, and I was at 4.2% 
by BM-FISH in 12/03.  I was lucky that I tolerated IFN better than 
many others, and was getting good results in the process.

In 4/04 my BM-FISH went to 16% (and back down to 12% six weeks 
later), but after talking to the folks at Hopkins, even they decided 
it was time to switch to Gleevec.  I was also sleeping 12-14 hours a 
day at that point, which gets old fast.  So, I started 600 mg daily 
in June.  Did the Gleevec Gain (which I have now lost -- yippee!), 
feel nauseous from time to time, mysterious bruises, lots of GI 
complaints and those mysterious fungal infections.  On the other 
hand, I have energy again.  My counts are blessedly stable, except 
I'm a little anemic.

Started going to Curves this fall to get my cardio into better shape 
and in the hopes that exercising would give me more energy, and it 
has worked for both.  I'm working out five days a week -- who would 
have thought!?!

My last PB-PCR was .028%, after four months on Gleevec.  We did a 
BMB and BMB-PCR on 12/15, and I am still waiting for results, sionce 
my doc was on vacation this past week.

My older son just turned 14 and is a freshman in HS and LOVES it.  
My younger son will be 13 in Feb. and we are now planning his Bar 
Mitzvah.  He has been preparing since May and I think will do a 
terrific job.  Instead of the typical big party we are having a 
simcha at home, which means I am spending lots of time painting, 
wallpapering, fixing furniture, hanging photos, etc. in 
preparation.  I don't know how I managed this while on IFN (my older 
son's Bar Mitzvah was 11/03) -- it's all a haze now!  

DH got me a new sewing machine for my 44th b-day/21st 
anniversary/Hanukkah (they're all within a week of each other), so 
now I have lots of projects to work on, too.  Life is good, so I 
enjoy every day.

Happy, healthy New Year to all!
Love, Lori
dx 5/13/02






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