Karen: I've had all these side effects since being on Gleevec (Feb. '04) at one time or another.......I see your son just began his journey with CML & Gleevec. What I did notice and others will confirm this, the side effects are pretty much worse the first six months to the 1st year you begin & then they sort of level off......come & go. I still suffer with the bone & joint pain, but take Advil Liquid Gels (sometimes up to four at a time) to alleviate it & my doctor prescribed a low dose of Percocet when it's more than the Advil will control. Also, have the muscle cramps, but they are not as bad because I take Slow Mag that helps as well as drink some Tonic Water w/ quinine in it at times. I will throw up after the Gleevec if I take the whole prescribed dosage (400 mgs) at one time, so I break it in half and take it after I've had a good meal with the other half after the next meal, no problem. Sometimes, I do have some nausea, but not as bad as in the beginning. Over the years, I learned to take a lot of vitamins to help such as a Multi-vitamin, Flaxseed Oil, Fish Oil, Glucosomine/Chondroitin, Slow Mag, Calcium, and a few others. About a year into my journey, a lady friend introduced me to Juice Plus of which I've been taking since. I was also told that Pomegranate Juice is very good for the blood, so I've been drinking some of that instead of grape juice. I think we have to learn on our on through our CML Hope group what works and what doesn't. I've been helped tremendously by these wonderful people & try to "give" back when I can. Our doctors are not going to really take the time to help us with all these side effects.....some here in our group says their doctors just look at them like they grown horns when they mention what they are experiencing. And, yes, there are those who developed some serious stuff and had to quit Gleevec, thankfully, now there are other choices. In the beginning with me, there were no other choices, so I have stuck with it all this time. I am now "none detected" after 7 years with Gleevec, but it wasn't like that until a year ago. I always tested in the .001% range after being on Gleevec a year through last July. I feel now that I've turned a corner, (smile)..........there are some in our group who've been on Gleevec since it's trials that still haven't reached that "0" level but are at very low percents as I had.
Your son also has other health problems to consider, so finding a good Hem./Onc. that will work with his regular physician, I think, would be in his best interest........some doctors end up working against each other or won't listen. I am not sure how it will effect the Crohns, but I do remember having horrible, horrible diarrhea during my 1st year which is a side effect of the Gleevec, too. I still have occasional bouts, but not as in the beginning. Others here in our group knows exactly what I'm referring to, (smile) And one last thing before I go, the biggest thing I learned right out of the gate.....having a very positive outlook, learning to laugh, & a strong faith is what has kept me going, even through the darkest of times that I had my first year. The absolute horrible fatigue nearly got me, I spent many days laying on the sofa wondering if I would ever have the strength to just get up and do the simplest of things around the house. I stuck with it and toughed it out & now, like I said before, I feel like I've turned a corner. God bless your son and you as you journey this together...... Suzieq -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
