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,
This may be very presumptuous of me, but what the heck. I am starting this thread for our transplant warriors of 2015. When I first joined this amazing group in 2013, as a chemo only AMLer, the very first thing that struck me was the awesome camaraderie I saw between the 2013 Transplant warriors. As someone newly DXd, I had very little exposure to those traveling the transplant journey. Reading the posts gave me so much hope and alleviated so much of the fear I had relative to the process. It changed my whole perspective.
As somewhat of an outsider, meaning transplant as plan B, I often thought/think how much these posts must help those going through it. Empathy is such a valuable thing and that's why traveling this journey together is so empowering. I know I gain so much from you amazing people.
So, I am starting this post in honor of those that have traveled this road mostly with great results in previous years and those venturing in in 2015. Scott Gotee (Sgotee) led the pack and I pray he will post and give us an update. Jack CC's bro and Dave Twilights bro are on this team. SteveKazoo is also out there. And Andy and John who are on their way on 2 Nov.
Let's lift up prayers and positive thoughts for these warriors.
Blessings,
Julie
This may be very presumptuous of me, but what the heck. I am starting this thread for our transplant warriors of 2015. When I first joined this amazing group in 2013, as a chemo only AMLer, the very first thing that struck me was the awesome camaraderie I saw between the 2013 Transplant warriors. As someone newly DXd, I had very little exposure to those traveling the transplant journey. Reading the posts gave me so much hope and alleviated so much of the fear I had relative to the process. It changed my whole perspective.
As somewhat of an outsider, meaning transplant as plan B, I often thought/think how much these posts must help those going through it. Empathy is such a valuable thing and that's why traveling this journey together is so empowering. I know I gain so much from you amazing people.
So, I am starting this post in honor of those that have traveled this road mostly with great results in previous years and those venturing in in 2015. Scott Gotee (Sgotee) led the pack and I pray he will post and give us an update. Jack CC's bro and Dave Twilights bro are on this team. SteveKazoo is also out there. And Andy and John who are on their way on 2 Nov.
Let's lift up prayers and positive thoughts for these warriors.
Blessings,
Julie
You both are an inspiration to us and we are so grateful that you shared your journeys thus far with us. You are in my daily prayers.
Blessings
Julie
How do you feel about starting a Transplant Team 2016? I know Tammy is in prep. She can use this thread as reference of course.
V.r
John
I remember my first meal out after my transplant. I was so anxious about the food, but enjoyed it anyway, because it had taken so long for my sense of taste to return. Everything sounds great for you. It is a wonderful feeling to get nothing but good results. Keep eating and exercising to get your strength back.
Bravo!
Cliff
This thread has been quiet for a while but I wanted to give you all a positive update. Today I am 5 months old! I had blood work and a clinic visit with my transplant doc on Friday, and for the first time since we thought I was relapsing in December, my eosinophil count is normal. They are 4% of my WBC at 0.19 -- normal is less than 0.55 and mine were as high as 20 pre-transplant and ~8 post transplant. The docs still don't know why my donor's stem cells started making eosinophils, but the fact that they were donor cells back in December, and not my cancerous eosinophils relapsing, was a miracle. Even though no one knows why, they have gone away on their own. That is yet another miracle. I am still unable to work and dealing with fatigue and some minor gvh, but I am alive and well and so grateful. My marrow still shows about 10% clonal mast cells which means I still have systemic mastocytosis, and the docs don't really know what that means. It might be like MDS - it can be a pre-cursor to certain leukemias (like my CEL) but it can also stay dormant forever. My new immune system might also destroy the mast cells slowly over several months or years. We are hoping for that outcome. My hemoglobin is still low (13.0, the highest it has been since transplant) and neutrophils are still only 1.57, but otherwise my labs are starting to look almost normal.
Tammy, I know the next phase of your journey begins tomorrow, and Ev you are in the toughest part of this journey right now. I am praying hard for you guys. You will do great. Use this board -- it carried me through many of the roughest nights to have this community even when I was confined to my room.
Andy, my transplant twin, how are you? Pop the question yet? ;)
John
you are a walking miracle and such an inspiration to all. I am so grateful that the Navy is taking care of you like the air force took care of me! Praising almighty God for your great recovery
Blessings
Julie
Hugs and prayers
Karen
I never stop learning from your bone marrow! It is such a puzzle. Nevertheless, the pieces seem to be falling into a NORMAL place, and I am thrilled about that. Your hemoglobin is excellent. It took me 4 years to get to an actually normal hemoglobin. The bone marrow environment interacts with the stem cells and it takes a while for all of the counts to completely normalize. Your ANC is fine as well and will slowly increase with time. The mastocytosis is very interesting and I would bet that your theory will prove to be correct -- that is that your immune system, as it reconstitutes will get rid of the excess mast cells. Everything sounds so good!!! The best is yet to come, as you begin to put this saga into the background of your life.
Be well and continue the fantastic progress.
Cliff