Acute Myelogenous Leukemia (AML) Support Group

Hi Scatterling:

Thanks so much for sharing. I am so sorry for your loss, and I wish you all the best.

It's difficult, standing back, and watching. Trying to remain supportive when you want to scream "please just try 1 time". It makes one feel useless, not useless, helpless. But I've come to terms with the decision. As hard as it is.

I spent the day with mom, we went to eat and walmart. She doesn't get out much anymore, so she was very happy to get out. I try not to keep her out to long about an hour is all that she can really handle. But all in all we had a good day, we talked about when I was little and she used to take me to the drugstore for a cherry coke, and went from there. It was a good day, but, a little melancholy.

This site and friends like you give me comfort and for that I am very thankful. I learn always from everyone elses experiences. And for that I am thankful.

I know it seems I'm not making any sense, I just really wanted to tell you and everyone thank you. Maybe tomorrow my thoughts won't be so jumbled.

Have a good night.

Blessings to all.

Dear PatchesOK---I too am new to this site---my father age 75 was diagnosed last week with AML and also is not a good candidate for chemo. The doctor did not indicate any "timeline" for what we should expect. He suggested my father go with "Support" for quality of life. My indication from the look on his face was that it would be months vs. years.

The only symptom my father had was shortness of breath---which is how he ended up in the hospital where they did the blood count check and then did the bone marrow test. His red count was so low, they said he should have been dead already. After 5 pints of red cells and 1 pint of platelets....my father was perfectly fine. Of course, his white count is very low and now has risk of infection. He was told he will get blood count checks weekly to see if he needs transfusions---this week....he did not need anything---they advised his blood count was not depleted at all. They tell him his heart is good and again, he has no other symptoms. He still has a great appetite, no weight loss, no bruising or bleeding and now, no shortness of breath. He feels great---and I believe my mother and sister are under the impression that as long as we continue support (transfusions when needed--and avoid getting sick)---he will be fine. The nurses at the doctors told them that they have several patients who come for transfusions (weekly, bi-weekly, monthly, etc) that have lasted years.

That is a total contradiction to anything that I have read.

I am so confused on what to believe. I live 12 hours away from them and flew up immediately when he was admitted. I am lucky enough to have a schedule that would allow me to be there as much as necessary but can tell you that it is hard to even tell he is sick now. He actually looks and acts healthier than he has in the last couple of years. I don't want to scare my family, but I really needed to check on this with others as I need to know whether I should be staying with them because it will come on quick or should I have faith that he will fight this for a long time. Was your mother offered this same type of "support"? And did her doctor say what would happen to indicate that there was just months for her? And were any trial drugs offered? or oral chemo drugs? I've seen some reports of promising studies---how do we find out about all of this?

I can relate to the pain you have been feeling and agree this is the most devastating situation I, too, have had to face and I will pray for your family.

If anyone out there can give me anymore info on this subject, I would certainly appreciate it...there is no worse pain than "expecting" to watch your loved one suffer. Thank you....