Chronic Myelogenous Leukemia (CML) Support Group

Hi Krissy,
I think the side effects of Gleevec are very challeging and change by the day. I've been seeing Dr. Druker and he's compassionate and sensitive about the side effects. I've also checked out other CML sites and many CMLers concur (myself included) that it's important to have a CML specialist as your onc. There are doctors out there who don't really understand CML and treatment. There are different "remission" levels with CML and it's important to reach certain incremental markers within the first two years of treatment. The most recent research indicates that those whose numbers line up with the statistical information indicated for the least risk of relapse in the first two years can have a normal life span. The reason I'm telling you this is because my last onc wasn't treating my CML correctly --- she didn't do the 6 month bone marrow tests (which are absolutely necessary) and she didn't understand my PCR results. So I switched to Dr. Druker. He told me that he would have done a 6 month bone marrow test and if I wasn't where he wanted me he would have upped my Gleevec or changed my treatment. My 1 year bone marrow test showed that I was in the right place, a complete cytogenetic remission, and an ok PCR (though it still has to get lower) so it turned out ok. Because of the many challenges I've had with Gleevec, he did a Gleevec level test on me and it turned out that I had a lot of excess Gleevec in my system so he let me reduce my mgs to 300. Huge difference -- we're watching it closely though.

So, all of this said, I can't understand why anyone's doctor who really understood CML and GLEEVEC wouldn't provide those papers. If you look at the recent Sprycel discussion, Bob replied and provided an excellent link to another CML support group. Look it up and read the info at the top for "anyone on Gleevec" and also the CML talk. You are not being a baby. I am just now getting back to work after a year off and a roller coaster of debilitating side effects. For me, over time the side effects have gotten better.

You can also e-mail Dr. Druker (you'll have to look him up online) and ask him any question and he will get back to you with an answer. He's in Portland, Oregon and there's another great CML doc in Michigan if you live close to either place. People fly in from all over the place to see Dr. Druker once or twice a year. They can still have their blood work done where they live, but have Druker manage their treatment.

I'm sorry this is long, but I've seen some scary CML stories out there where the doctors did not know what they were doing. So I encourage you to make sure you are seeing someone who really gets it.

I'm sorry you are having such a hard time -- you are a true warrior and should be able to stay home and rest when the really hard days happen. Take really good care. My thoughts and prayers are with you. Warmly, Kim

Also Krissy,
I have found ways to deal with the pain and trouble sleeping. You can write me if you are interested and I'll respond on the backboard.

Hi Krissy,
It is your right and overall desire to feel well, but facing it we just do not all the time. My vote is to find a doctor that is more supportive and helpful. you have enough pain already, you do not need this pain in the ass.
Marc

I completely agree about the pain in my ass! Took the words out of my mouth! lol. Thats everyone with commenting. I guess I need a new doctor. I am in Texas so Michigan is a little to far for me. Thanks again my CML friends!

Dr. George Cortez at M.D. Anderson in Houston Texas is a well respected CML expert.