[CMLHope] Re: CML & Crohn'

Sat, 02 Sep 2006 05:03:36 -0700

OMFG!!
Pete I am so sorry to hear that not only do you have CML but you also have Crohn's Disease. I do not have that combo but my fiance Regina has Crohn's and it is not a picnic for her let me tell you. So I can sympathize allot. Regina does not handle stress well at all, and it fact that is what ended up causing her to progress from Ulserative Colitis to having Crohn's. In fact my doctor visits are rougher on her emotionally than they are me.
I just cannot imagine having both, but your still hanging in there so you have to be one hell of a man. We sort of have a running joke in our household about what a pair we make, me with CML and her with Crohn's. Regina does well though I have to say, she does have as I said problems with stress but she is on meds for that, and we are taking steps to eliminate certain people that have been in our lives that have been causing allot of her stress. When I say eliminate I do not mean we are going to "off" anyone..rotfl. It is just she has a family member that wants her to take care of his family as far as watching their kid, cleaning their house, etc. Also she has some "friends" that tend to want to do nothing but bring constant drama in her life, so we have been slowly withdrawing away from them. Pete just hang in there my friend, and if you have any advice for Regina or any questions about CML please let me know. As far as you pain from CML, I have it everyday. It seems the side effects of Gleevec vary allot from person to person, but we have some very helpful and knowledgeable people on our list. Hang in there Pete,
 
Terry

 
On 9/2/06, Pete <[EMAIL PROTECTED]> wrote:

I have had Crohn's Disease since 1979 and was dx with CML in Apr 03.
Does anyone else have (or know someone who does) have the same
combination? I'm experiencing some side-effects from Gleevec that
others without that combination may have - from what I'm finding as I
continue to explore. In fact, I've visited with Dr. Druker at OHSU
several times since dx and he knows of no-one else with that
combination - and, I think, thereby helps to confirm what I'm finding.

Specifically, my most long-lasting side-effect (or symptom) has been
morning achiness (flu-like symptoms every morning until at least two
hours after having breakfast and taking my meds - my list is longer
than most since I have two diseases to treat). This truly is achiness,
and NOT bone pain or joint discomfort, though they are contributors to
my overall achiness.

I've experimented with changing meds, dosages, time of day, etc. to
find an answer - but no luck. In fact, the achiness is taking longer
and longer to disappear after taking my morning breakfast and meds.
I've also ruled out many other things by exhausting my primary care
physician with referrals (endocrinologist, rheumatologist, pain
center/clinic, urologist, cardiologist, etc., etc.).

Is there anyone else out there that can relate??? Thanks!!!




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