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.
I am currently at Day +7 post transplant. I had a tough time with the conditioning chemo in terms of chemo brain. I felt like an absolute crazy person for a good few days. However, that's well over. Other than that, the transplant itself went smoothly, and I felt amazing for a few days afterwaRd. I had more energy and a great appetite. Unfortunately, as everyone expected, everything started to hit me yesterday (Day +6). I had an extremely difficult day yesterday. Woke up w/ throat pain (I am no longer able to deal w/ any cold food or drinks). I have been given "magic mouthwash" for my throat. I also had terrible sinus pain. The doctors immediately set me up for a CT scan to check for a sinus infection. Luckily, no infection was found. However, I woke up again today w/ the awful sinus pain. I am wondering what could be causing this? Hoping the Claritin will help me. Furthermore, I developed some pretty serious stomach pain yesterday morning as soon as I started eating breakfast. Also, got very sick yesterday, despite the many anti-nausea meds I was given. My nurse said that the stomach pain is very common. Does not make it any easier to deal with. I hope that I will only have to deal with al of this for a few days, as I started receiving neupogen shots yesterday. I'm told that those can cause some achiness in my bones, as well. I'm sure these reactions are all common and expected, but they're making me pretty miserable. Just trying to remember that it will all be over soon.
I take a generic Claritin every morning -- have been advised that I have a pretty much permanent allergy issue out here in the country where the pollen is heavy most of the year round (there is always some new flower coming out except in the dead of winter). Be sure -- no flowers in your room -- they would not even allow them on the floor when I was in chemo. The Claritin will reduce the drainage on the back of your throat and help to eliminate the sore throat.
I tried that magic mouthwash just once and could not take it -- I forget just why. If it works, fine, If not, then a solution of salt and baking soda in water that you rinse out with hourly will help. They will give you the amounts -- not much -- a couple teaspoons in a quart of water ... does not have to be much but it helps to emulate your natural juices -- plain water in excess can wash them away. Be sure to use it hourly if you can.
You have the right attitude -- you are probably still neutrapenic and your body cannot fight things off -- once your numbers come up a lot of these things will just go away.
I am glad to hear that you have recovered (to the extent that you can realize it) from chemo brain. We are all aging and it is hard for me to tell if it is/was the chemo or just the fact that I have never been the sharpest knife in the drawer. No matter, I can function.
Take care -- we are praying for you -- dave
I also have chronic issues with sinusitis. I have found irrigating with a Nettie bottle to be useful. I use a solution of sterilized water and saline, with a drop of oil of oregano. For the sinus pressure, I use Pseudoephedrine, but I try not to overdo it, since it can counterproductive--or so I hear.
I will be praying for you. :)
We all felt awful after our transplants. Don't forget, the conditioning regimen is perhaps the most drastic therapy you will have gotten, because it kills off EVERYTHING. That is way the other parts of your body suffer as well. It will all get better. I promise. As Dave said, when your counts return, many if not all of these annoyances will resolve.
Eat frequent small meals. I am sure that there is always some ice cream on the floor as well as toast. I found eating rather difficult at first, although I never experienced nausea or vomiting. Everyone is different. I also never had any sinus issues, which shocked me, because I have had episodes of sinusitis in the past.
Now that you have gotten your transplant, you can look forward to being left alone for a change. You will just get better and better and, yes, you will return to a normal life. I promise that as well.
Please let me know if you are experiencing any issues as time goes along. I will try to answer your questions.
Cliff
Don't know what drugs you are on, so this from my post transplant experience
The one immunosuppressant drug (CellCept aka Mycophenolate Mofetil) I couldn't keep anything down and horrible stomach cramps, even with all the oral anti metics. My NP put me on a Kitryl based patch - Sancuso it helped a lot.
So glad you are on the otherside of transplant. Praying that your road to recovery smooth s out.
Julie
Not a fun phase, I know from all my husband went through after his transplant in January, but it does pass. It may seem unending, but as I would tell my husband every day is one day closer to recovery.
Please know we are all here on the side lines cheering you on.
Sending happy thoughts your way,
Colleen and Harry
Have not heard from you-praying all is well.
Please give us an update.
Julie
I am doing well, Julie, thank you for your concern. I know I have not been on the forum in awhile. Today is my Day +39, and I just celebrated my 25th birthday this past Saturday. I have been feeling pretty well overall since my transplant and have not had any serious complications. I recently had my Day +30 bone marrow biopsy, which revealed no signs of AML, and my cells are now 95% donor's. My counts are also all holding their own. I am incredibly thankful for how smoothly my recovery has gone so far. I did develop minor gvhd in my mouth, but have been using steroid mouthwash for it. Seems to be helping. Always monitoring for it elsewhere, though.
The only thing that's been a little tough for me is having to stay so close to home. I know it's only temporary, and it's for my best interest, but it's definitely felt isolating. I just feel that I've been given this new life and I want to run out and live it and enjoy the sunshine and fresh air everyday. But, I feel like I'm not really allowed to leave my house except for doctor's appointments. But, like I said, I know this is just temporary and that the health and safety measures I'm using now will help to keep me healthy in the future.
Hugs,
Monique
Hopefully you will be enjoying that fresh air sooner than later :)
xx
So happy your path has been mostly smooth.
May God continue to bless you!
Julie