Thursday, November 20, 2008

Too Much About Leukemia

I listened to the Leukemia & Lymphoma Society's telephone education program yesterday entitled "Acute Myelogenous Leukemia: Understanding Current and Emerging Therapies." Dr. Appelbaum of the Fred Hutchinson Cancer Research Center was the featured speaker. Listeners were able to ask questions at the end of his remarks.

What I learned from the program is that I know too much about leukemia. I've been reluctantly studying it for over two and a half years and have become something of a lay expert. I say this because none of the information about leukemia therapies was new to me. I hung up during the question and answer session because the questions seemed so basic.

Sadly, not much new has emerged in the time I've been a student of leukemia. The initial treatment protocol remains more or less the same. It's clear that researchers seek better outcome predictability so that patients and their doctors can make better choices about when to go the transplant route. Right now, if you fall into the intermediate risk category (I did), it's a crap shoot as to whether you should do chemo alone or proceed directly to transplant. Dr. Appelbaum stressed that patients should have adequate cytogenetic testing on their initial bone marrow sample to gather as much information as possible relating to relapse risk. Unfortunately for patients and caregivers listening to this tele-conference, the horse has already left the barn. Your tissue was either properly tested or it wasn't, and it's too late to do anything about it now. Where you are diagnosed often determines whether you receive state-of-the-art testing. Having an oncologist who keeps up with the latest research will also impact your testing and treatment.

My advice to anyone recently diagnosed with AML is to educate yourself and ask questions. Make sure every test available is performed on your leukemic cells. This will give you and your doctor the best information as to what treatment plan is your best option. Not all treatment is equal.

It's your life, so fight for it.


Samantha MacRae said...

Hear, Hear! Graham and I were only speking about this very topic today. If we had taken the advice given to us when Graham was diagnosed, he wouldn't have seen out the year. Thanks goodness for the Hutch and Dr Applebaum et

Sam xx

Jim said...

Thanks for the info, PJ. Good update.