I've been following this great board since my DX in Oct. 2010 with CML and finally decided to say hello. My dr. feels I've probably had CML since 2007 by looking back at various blood tests (wbc) I've had in the past. I've been on 400mg Gleevec since then & been dealing with side effects same as others. On my last blood test a few weeks ago the dr. informed me that his test came back showing FULL molecular remission which is a GREAT thing, although I'm not feeling ANY better than before my dx and am sure it's due to the G side effects. It seems to me a "CATCH 22" as the CML caused my EXTREME fatigue and now I STILL have it probably due to the G.
I've always been a VERY positive person that NEVER gives up, I've worked in auto racing for over 20 yrs., work out heavily to keep in shape (swim 3,000 yds day/3 days week, on the "machines" 3 days also). So much for my "Fit For Life" work ethic! If you google my name as Steve Fried Racing you'll see I already was DEAD in 1999 at the Indy 500, & the reason helmets in pit lane were started as we didn't wear them then. so I guess all the years since then have been gravy to me!
Many think that racing is glamorous and I've been blessed to make my living pursuing my passion! What isn't seen is the loooong hrs and strenuous times both physically & mentally. The norm at the track is 12-16hr days (&nites) with some 24-48 hr "all nighters" when things go wrong! I'v been TRYING to work since 2007 but thought I was just turning into a lazy bum as been so run down & my "Super Man" I used to have was fading away. After 2 grueling weeks on the road in June this past year during a heat wave of 95+ degree days I finally was taken to the hospital with heat exhaustion! I NEVER had a problem dealing with heat in the past. After returning home & getting some rest thinking that was all I needed I then noticed my weight drop 10 lbs. in 2 weeks from my target weight. That started me to the dr., who sent me to my current specialist with the great CML news to come.
I've ALWAYS worked my entire life, overcoming my severe brain injury and many other injury's from my accident in 1999. So now realizing I'm not going to be able to is quite the blow! My wife & I are checking into SSD but from what I hear it doesn't look promising. I KNOW that I'm VERY lucky as my medical plan from my wife's job is covering the G with a small co-pay, at least so far.
It has been a big help to come here & see others experiancing the same problems as me. The one thing my dr. told me is a SLIGHT light at the end of the tunnel, he said he's heard of people stopping the dreaded G after 2-3 yrs in remission. and in 50% the CML dosn't return. Has anyone heard of this before?
THANKS ALL for sharing your stories!