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.
Dear all,
Ok, now that it seems like transplant season here, I am added too. Starting chemo today and scheduled for transplant on September 4th.
After some ups and downs with potential donors, my donor is 9/10, 28 year old male.
I'll be getting 4 days of chemo (2 drugs, I need to look for their names...) and 3 days of ATG immunosuppressant (1 day overlapping). Did anyone have ATG? I hear it's no fun....
It's very scary, especially to be feeling well and healthy but knowing it's just an illusion and that the transplant is needed. And also knowing that how I currently feel will very soon be replaced by feeling quite bad. AND how unpredictable it all is (I know the future is unpredictable for everyone, it's just that we have this hyper-awareness to this fact).
Overall I am well, with good energy and able to do some work, which is the best distraction.
Wishing all of my fellow end-of-summer-early-spring transplant buddies lots of luck and health. It's great to have you all here as support.
Abby
Ok, now that it seems like transplant season here, I am added too. Starting chemo today and scheduled for transplant on September 4th.
After some ups and downs with potential donors, my donor is 9/10, 28 year old male.
I'll be getting 4 days of chemo (2 drugs, I need to look for their names...) and 3 days of ATG immunosuppressant (1 day overlapping). Did anyone have ATG? I hear it's no fun....
It's very scary, especially to be feeling well and healthy but knowing it's just an illusion and that the transplant is needed. And also knowing that how I currently feel will very soon be replaced by feeling quite bad. AND how unpredictable it all is (I know the future is unpredictable for everyone, it's just that we have this hyper-awareness to this fact).
Overall I am well, with good energy and able to do some work, which is the best distraction.
Wishing all of my fellow end-of-summer-early-spring transplant buddies lots of luck and health. It's great to have you all here as support.
Abby
The doctor says things are going as planned.
I'm starting neupogen shots today (+7). Did you all have them as well?
They're giving me a drug combo now for nausea and it's been helping.
Mouth sores started (yippie) as well as a burning sensation in my throat and chest. I find cold drinks are easier than food, and actually offer some relief.
You have no idea how helpful it is to read other people's experiences, it sounds like C-diff, nausea and mouth sores are all part of the process....
Thanks!!
Abby
davej
I'm on morphine (2.5 mg per hour) which makes it just a bit better.
In addition....I have diarrhea and I vomit a few times a day. And feel nasty overall. Needless to say I can't eat and what I do drink (including a tiny bit of ensure) quickly finds its way out.
Today by trial and error I found that room temperature tea is something I seem to tolerate.
I know once the counts start going up this will all improve. I also hear from the staff that these are the hardest days in the process.
Those of you who have gone through it as patients or caretakers, any tips about how to make this even a bit more tolerable?
Thanks!
Abby
Its so good to hear from you. Over the next few days things will start to get better and once that happens you will feel better with each passing day. Jeremy slept alot during this time and took Zolfran for the nausa.
Yesterday day +17 he texted and asked me to bring him a home cooked dinner which he ate all of, so you are almost there.
With each passing day as your counts come up the sores and nausa will get a little bit better until suddenly you realise they are gone and you are hungery.
Hang in there you are almost over the hump.
You are in my prayers.
Karen
Thinking and praying for you daily.
Lora
Although day 17 is 6 days away (but hey, who's counting....) and right now it takes a lot of energy and patience to just go through each day... But I know that at some point this will all become an anecdote...
Abby
davej
Just "celebrated" 2 yrs from Dx and one year back-to-work by spending the weekend kitesurfing. 4 hours each day. Even with my annoying GVHD.
It will not only be good, it will be better because you'll appreciate every normal day much much more...
best of luck and quick recovery!
boris
She did try and get some water into her but I was not that successful, I guess this is why they encourage you to be the best when you start it as things go by the wayside when you are at this stage.
In the end she could only stomach the supplement drinks that they gave her, and tea like you mentioned. Just the thought of hospital food on top of everything else made her not very hungry.
She did try toast just plain toast.
It did eventually go, but it was not really the most pleasant :(
xoxo
Sal told me to tell you that the most important thing to know that it doesn't go on forever, it will be over soon. I know everyone has been telling you that. It's true....but I want you to get some relief!! :) I remember Sal had to use a suction wand to try to get rid of saliva rather than choke on it. And this was often quite painful.... the saliva itself moving against the sores inside his mouth was excruciating for him.
Salt water rinses helped him the most, when he was able to do them. (Just warm water and table salt.) As often as you can, even if you can't really swish the water around, just pour the warm salty water in your mouth and let it run out. As things slowly improve, you'll be able to swish the salty water around easier.
We are thinking of you daily, Abby. This is the worst part.
xoxo
Monique and Sal
xoxo
Monique