Acute Myelogenous Leukemia (AML) Support Group

Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.

307 Members

1,142 Posts

0 Online

brylee 04/06/2010

My dad's last WBC was up to 75 and he is starting to develop large black bruises and sleep 16 hours a day.

I live 3000 miles away - doctors won't give a prognosis of how much time he has left. I want to see him before he goes but I can't afford to fly back and forth several times. I'm scared I'm going to go too late - should I plan to go back soon?

dbrowncsuaedu 04/08/2010

Yes -- go now. Upside -- you will see him. Downside -- he might not die soon -- HEY -- that is NOT a downside! Go now while you know you will see him alive.

deleted_user 04/08/2010

Brylee,
It is one hell of a decision. Unless he has a severe infection, MDS may take some time to become terminal. We do not die of MDS, but we do get infections which the body cannot cope with, or internal bleeding, or a heart attack or stroke or,,,,,anyone of many things, but it is wrong to think that death is for tomorrow, unless he has one of these killers.
I cannot advise you, but all my thoughts are with you in your decision. Please keep us informed.
Chris jb.

deleted_user 04/08/2010

You just never know - my Mom died last October 3rd, after an August I thought she'd never live beyond. I was lucky in that I was able to move my Mom to a nursing home very near where I worked (about a 10 minute drive) so I could visit her every day at least at lunch time. However, I did not have a compelling need to be there when she died (in fact, my kids and I visited her the morning she died, and she passed less than 2 hours after we left). I did enjoy being with her prior to then, and just spending time with her. I think the timing of that relative to someone's death is not critical - what counts is that you get to spend any time with them. My mom was pretty lucid the last few days before she died, even though she had been quite "foggy" at times before that. Everyone's experience with this disease is unique; if you want to see what ours was like, go ahead and read her Caringbridge site (I maintained the journal) at www.caringbridge.org/visit/barbarameyer - can't hurt, might help! Keep us posted, and feel free to ask any questions that come up.

deleted_user 04/09/2010

Brylee,
How are thiongs going.....I keep thinking of you and wondering.
chrisjb

brylee 04/09/2010

Hi, Chris - we're hanging in, thanks for asking. I talk to Dad regularly - he still contends that the doctor's don't know what they're talking about. I'm waiting to here what his oncologist says after his appointment on Tuesday and then I might have a better idea ... no infections yet, he's checking his temp twice a day. Thanks for all of your thoughts and prayers.

deleted_user 04/09/2010

Dear Brylee,
Let us know after Tuesday. Good luck, and just remember things are not always as bad as they seem at first. If your Dad has no infections of his internal organs, he may have some time to go, and I hope he does.
Chris.

deleted_user 04/14/2010

Hi Brylee,

I hope your dad is still confounding the doctors ;-)

What's the word from the oncologist?

-Damon

Join the Conversation