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.
Hi,
I'm 44, married with 2 sons (8, 13) and was diagnosed 2 months ago with AML with MDS related changes (high risk with 3 chromosome abnormalities). I'm at MD Anderson, and live in Houston, so that convenient. When diagnosed I immediately when through inductions as all my blood numbers where quickly tanking.
After induction I went home to recover, returning for bloodwork every other day. About day 14 I developed infections (UTI, blood and eventually pneumonia) and was admitted to hospital for about 10 days to get over all of that. Day 23 my levels started returning to normal, I got a BMB at the end of the of the cycle and it showed that I was in remission. YAY!
I started cycle 2 on June 20. Cycle 2 has been better. No hospital stays, no infections, very little mouth sores, but I'm on day 32 and levels are still low. (WBC: .5, Hemo: 8.7 and Platelets: 8) I keep hoping that things will start rising, so I can start cycle 3, yay! (sarcasm)
I'm on the list for SCT, so I'm hoping to be on the 2014 Transplant team. My half sisters were tested and weren't even close to being a match. I found out 3 weeks ago that the registries were checked and I had "over 100 potential donors" so they just needed to start contacting them, getting consent, getting bloodwork to do further matching to shoot for that awesome "10 out of 10" match.
Today at my bloodwork appnt, I asked the Leuk nurse to peek in the SCT files (they are 2 separate departments) and she saw that I had 2 donors that are sending/have sent their blood in for further typing! So that's exciting.
I've been told that I'll need to stay in the hospital for 30 days to get ready for the SCT and recover a little from it, and then I must live less than 30 minutes from the hospital for the remaining 100 days in case of infection. Unfortunately my house is 45 min from MDA when there is no traffic. So i'm planning to stay at a little rent house close to the hospital, with my mom mostly. Just becoming terribly anxious about being away from my kids and home for that long.
Anyway, this has been a rollercoaster for sure. I started out super positive, then waivered, now I'm kind of in the routine. This is my new job, getting well. I'm sure you all know what I mean.
This got long, lol. THanks for listening! I'm looking forward to getting to know you all.
Lora B
I'm 44, married with 2 sons (8, 13) and was diagnosed 2 months ago with AML with MDS related changes (high risk with 3 chromosome abnormalities). I'm at MD Anderson, and live in Houston, so that convenient. When diagnosed I immediately when through inductions as all my blood numbers where quickly tanking.
After induction I went home to recover, returning for bloodwork every other day. About day 14 I developed infections (UTI, blood and eventually pneumonia) and was admitted to hospital for about 10 days to get over all of that. Day 23 my levels started returning to normal, I got a BMB at the end of the of the cycle and it showed that I was in remission. YAY!
I started cycle 2 on June 20. Cycle 2 has been better. No hospital stays, no infections, very little mouth sores, but I'm on day 32 and levels are still low. (WBC: .5, Hemo: 8.7 and Platelets: 8) I keep hoping that things will start rising, so I can start cycle 3, yay! (sarcasm)
I'm on the list for SCT, so I'm hoping to be on the 2014 Transplant team. My half sisters were tested and weren't even close to being a match. I found out 3 weeks ago that the registries were checked and I had "over 100 potential donors" so they just needed to start contacting them, getting consent, getting bloodwork to do further matching to shoot for that awesome "10 out of 10" match.
Today at my bloodwork appnt, I asked the Leuk nurse to peek in the SCT files (they are 2 separate departments) and she saw that I had 2 donors that are sending/have sent their blood in for further typing! So that's exciting.
I've been told that I'll need to stay in the hospital for 30 days to get ready for the SCT and recover a little from it, and then I must live less than 30 minutes from the hospital for the remaining 100 days in case of infection. Unfortunately my house is 45 min from MDA when there is no traffic. So i'm planning to stay at a little rent house close to the hospital, with my mom mostly. Just becoming terribly anxious about being away from my kids and home for that long.
Anyway, this has been a rollercoaster for sure. I started out super positive, then waivered, now I'm kind of in the routine. This is my new job, getting well. I'm sure you all know what I mean.
This got long, lol. THanks for listening! I'm looking forward to getting to know you all.
Lora B
As for the diet, this is just a precaution, but it is one that sure cannot hurt anything. Just because he does not mandate it does not mean that you cannot. The theory is that there are bacteria and things like that that our normal systems just kill on sight that the person who is neutrapenic has no defenses for. So I would opt for the hospital neutrapenic diet if they have one, and just use good sense when it comes to anything that could harbor the nasty stuff. I still have reservations about squeezing my lemon and then throwing the skin in my tea. Something about that just does not seem right -- depending on the restaurant to make sure the lemons are clean. No use in tempting fate -- taking every precaution possible is a good policy. Take care -- dave