When I was diagnosed with Acute Myelogenous Leukemia it was hard to find helpful information about what it was exactly and why it occurs as well as how it was treated. Mainly I wanted to know what I was up against and what was to be expected. The first time I was diagnosed I was too sick to care what was going on just that the steps needed to be taken right away and my mom made all the decisions on my behalf. Of course doctors try to tell you what is going on and what is happening and some things to expect but when everything happened as quickly as they did for me there was no time to think about anything let alone fully comprehend what anyone was telling me. Plus, I was miserable. I don't remember too much about the first few days, or maybe it was more, because I was so out of it, so of course I was not going to remember anything but the fact that pain meds were my best friends at that time.
It was not until after I was feeling better and had gotten through the initial stage of treatment where I was able to start searching for information and try to find some answers that were more insightful than medical talk from doctors. I think some doctors forget that their patients are not medical professionals and they really need to dumb down their vocabulary. Sometimes they just need you to tell them and ask them questions about what you are not understanding, which takes energy that you do not always have.
Dr. Daniel A. Pollyea, an Assistant Professor of Medicine in the Division of Hematology, Hematological Malignancies and Bone Marrow Transplantation at the University of Colorado is working on making more information available to families and those diagnosed with leukemia. His blog is titled Leukemology and he discusses the different types of leukemias, looks at why it happens, the prognosis, the different ways it is treated and talks about research and clinical trials. I found this helpful, and since my explanation of AML is in my terms and may not be entirely what you are looking for, I suggest taking a look at his blog. He also talks about why it is important to participate in clinical trial studies and stem cells, something that I believe to be important as well.
Here is the link to the website, I hope you find it as helpful as I did:
http://www.leukemology.com
