Hey PamM,
I am not the expert here. I think the choice of how low to let your counts go would vary from person to person, even the scholarly. A lot would depend on if the patient has a lot of trust in doctors and if they would rather comply with their doctor, then the alternatives, which takes some risk, the way I look at it, you take a calculated risk either way. Some patients would not want to do their own research and make that kind of decision, if it is agains their doctor. It can be rather intimating to challenge your doctor and stressful to change doctor. I often wonder from the old timers CML patients, if they would have done things differently, looking back. Then again doctors can get very upset if you don't comply or question them. Then it gets scary as to finding a doc you can work with. You know that doc is getting paid big bucks for all us cancer patients. So are the drug companies.
Me for one if I knew what i know now, I would never have let my CBC counts, including my blood pressure which dropped down to 60/30, get that low again. I mean they hit you hard then I had to go to the hospital for IV. I know they say, get rid of as many CML PH+, so your healthy cells get a chance to recover while CML is slow. But then I wonder about the things that can happen on low counts, it sort of a trade off. I think most new diagnosed are afraid to go against doctors orders, I know I was to a point. But wasn't long I was flying off to another cancer center. Same goes for doctors, some go by guideline and others not so strict, but I think most docs like to stick to the guideline, or protocol, maybe that protects the doctor to say I went by NCCA guideline, or they are just more comfortable especially if they are not CML specialist or have had a lot of CML patients. Then again I think that is the was onc are taught from years gone by hit the patient hard. I think perhaps times have changed.
I don't have an answer for you as everyone is different.
Just Saying, do your homework, get lots of opinions for others and the experts on the board. Then go by your instinct, cause your the only you, and the only one that has got to live, with right or wrong choices. No one else in your exact shoes. Not that there is a perfect solution. At least not until they find the cure. Which at present is still the BMT.
P.S. Just got back from dinner. I was thinking I should clear things up a couple of things about flying off to another cancer center.. Back in 2005 and 200, I flew to MD Anderson Houston Tx. I live in Indiana. MD Anderson along with my local hospitals were have clinical trials of 400Mg vs 800 mg of Gleevec. There wasn't a whole lot of data on a lot of things back then. MD Anderson was also going by the national guidelines.
However I decided as my counts started to come back up, not to go on a higher dose, and risk getting low counts again. I wanted to wait until there was more data, which I knew was a few years down the road. Plus there was the quality of life issue for me. That was another reason I didn't want to change to a newer drug unless there was a need. My onc had said better drugs out, but I knew that wasn't always true for everyone, as it takes many years for studies and the longterm out come of patients.
So It was just a personal decision not to let my counts get so low, again.
Prayers, PamSouth
