Chronic Myelogenous Leukemia (CML) Support Group

No second opinion because of high white blood cell count and presence of philadelphia chromosome, but I worked with 3 other oncologists before I found the one I currently work with. It's really important to like and trust your doctor. I think people take Gleevec at different times. I've experimented and found that I like to take it at 2:00 p.m. with a large lunch. That way I don't stress when I don't get up the same time each day and I don't worry if I don't feel like much dinner. I'm sure you've been told to have a large meal and a glass of water. I've been dealing with it for a year and I'm doing well. It's a manageable illness. Good luck!

Any side effects from the Gleevec?

Thanks for replying.

I, too, did not get a second opinion because my internist found the CML and he has been my doctor for nearly 40 years. I also have faith in my hematologist/oncologist. It is important to feel good about your doctor. I was diagnosed 3/13/09 and started on Gleevec right away. I take it with my evening meal, on a full stomach, and I have not encountered any problems. The side effects are another story. I still have puffiness around the eyes, although it is getting better, and some occasional muscle cramps and bone pain. Mostly I feel very well and it is amazing how the news about CML and Gleevec has shifted in the 6 months since my diagnosis. Clearly CML is now thought to be manageable if the Gleevec works for you. Best of luck!

Side effects vary out there. I had many for the first 8 months, mostly severe leg pain, fatigue, and swollen eyes. Most of the side effects have gone away now -- I had many days where I thought I would never feel normal again. It can take time for the bone marrow to heal.
Life has pretty much come back to normal. Give yourself time to heal in the way that is right for you. Best of luck!

Caselmar, you were diagnosed on my birthday, sorry to share the date.
No second opinion needed, maybe ask for a repeat of lab work, but it is pretty straight forward the yes or no part.
Finding a doctor you connect with is a very important part, surrounding yourself with a team that is really on your side is important.

It is hard to understand and come to the realization that you have Leukemia! At least it was for me. But I think if all of the labs line up and you have the philadelphia chromosome then you got CML and welcome to the group (even though we didn't choose this group). The treatment is not the most fun but it works and there is so much hope that it is okay and will be ok. I take Gleevec at night when I am about to go to bed because I can sleep off the nausea sometimes but at first be prepared I had almost the list of side effects starting out. It seemed like each week there was a new one. Good Luck! You can do this and we are here for each other.