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.

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another jamie update

jmysray
jmysray
I have had to be home this week, so I am relying on what Jamie is telling me, for the last few days he has had terrible headachs the doctors say it is to be expected, but they do not seem to be getting his medication soon enough to him so he ends us being miserable for a couple of hoursvwaiting for medication to take hold. He us also reporting appetite is low due to the taste everything seems to have to him, I asked him to describe he said it was hard to do when I asked if it had a metalic taste he said kin of. While his mother was there she indicated he was having trouble sleeping at night, she thouhght it could be the medication, she reported she would have him get up and they would walk a lap or two and that seemed to help. Can any other bmt patients share things they experienced and things that helped them so I might pass them on to Jamie. They are talking about letting him out end of next week to a facility. Where he will have to have a full time caregiver and is less than 30 minutes from transplant center. Doctors say he is doing good , but from standing on the sidelines he appears to be miserable.
dbrowncsuaedu
dbrowncsuaedu
It appears that Jamie has not fully recovered from his last chemo -- the one just before the BMT. This takes time and it is kind of uncomfortable for a while, but as long as the doctors are not concerned, then everything is probably par for the course. The way I described it is like a fire cracker when off in your mouth -- sort of a gun powder taste. It might take another week or so, but this will go away. In the meantime he just has to force himself to eat whatever he can -- high protein shakes would be good. The reason the med folks delay the pain killers (usually Tylenol) for the headaches is that they do not want to mask the symptoms of an infection. So they do delay things for about four to eight hours. It is not pleasant but it is necessary. All of these things will take care of themselves once his blood numbers get back up -- and they will shortly. Walking around at this point is good -- perhaps three times a day -- but do not over-do it. Please keep us up on how Jamie is doing -- dave
mtnbyker
mtnbyker
Sorry the hear about the headaches, they are terrible. Is he keeping hydrated enough? with the nausea it can be hard to do and that may be a contributing factor to the headaches. I imagine they would have him on iv drip if they thought he was dehydrated? The taste thing must go different for lots of folks because it took me months to get over that, and some report having their taste back in a few weeks. I used to take an ativan to help me sleep, still do once in great while. It seems to help me at least. It will get better, tell him to hang in there. My go to when I couldn't eat was a vanilla ice cream mixed with strawberry ensure. I could get that down and keep it down. When I was close to coming home I was a little nervous about that, he may have some anxiety going on about that also. Praying for an easy road ahead for Jamie, if the docs are happy with his progress that is really good news!
davej
worriedmom2014
worriedmom2014
The Daves are correct. My son was the same and once his numbers started coming back up things started to get better. He lived on Ensure for about 10 days and then all of the sudden he was eating again.

Jamie is in my daily prayers.

Karen
jmysray
jmysray
Thankyou for the advice I will pass it on to Jamie, I am sure all is normal since the doctors are pleased with his progress, it is just hard sitting on the sidelines and not feeling like you can help so I appreciate being able to express my concerns to others that have gone through this it helps to put things back into perspective.
Liz
CajunGirl2015
CajunGirl2015
Liz,

You hit the nail on the head. This site is great even if you just read the posts. I hate to comment on others posts because we have just started this journey not too long ago and I don't feel like we have experienced enough to have much insight to give.

It's hard not to worry even when the doctors say we don't think there is anything to worry about. After my sister's visit with MDA Friday, we all felt relieved because he didn't think we needed to worry but then she had her blood drawn again yesterday and her platelets had fallen again and the anxiety was right back. I guess you just have to have faith that the doctors know best and try not to worry until you have to worry.

Glad everything is going well with Jamie and it seems you guys are coming out on the other side of the tunnel. Can't wait for my sister to get there also!

Debbie
xuelan
xuelan
Debbie,

Remember that platelet counts are the most variable. They can change a lot from week to week. Even now, my platelet counts can vary quite a bit. Don't focus on numbers, only the big picture.

Cliff
mtnbyker
mtnbyker
It's the same with me on the platelet count. I can vary up and down by 30 points on some visits. I know Jo's further treatment depends on her count though, just making it all the more stressful which she doesn't need right now. Still praying every day for you both as I'm sure lots and lots of people are. She will get there.
DaveJ