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
John, your itching could be a sign of mild gvhd of the skin, I had the same thing, it kind of comes and goes for me, right now it is back. And the fatigue goes with the territory.
Glad to hear that you are close to going home andy. You will all get there, back to a new normal life, in time. I will continue to pray for the cure.
DaveJ
davej
Dave,
What is your best way of dealing with the itching. It is driving me crazy!
John
See if you can get your pharmacist to make up Lubriderm with 1/4% menthol and 1/4 % phenol. It is very useful to treat itch and it will also lubricate dry skin, which is another cause of itching.
Cliff
For me, my labs have been acting as such:
WBC: low 4.0s
HGB: mid-upper 12.0s
PLTS: low-mid 50s
My platelets got knocked down pretty good from the EBV I dealt with back before Christmas. The EBV was detected in my bone marrow, but the latest blood test showed no EBV in the blood. Today's EBV test was pending when I left.
Davej
Today is Day +82! After meeting with my doctor, if I really pushed hard for it, I could go home this week. But, I have a BMB in two weeks and rather than make the extra drives, I'm just going to wait it out. After 5.5 months, I think I can handle two weeks haha.
Life has been rather boring. But boring in the health department is good news! I just really look forward to going back home.
John, my twin, how is everything going with you?
And to play to my Louisiana roots, Happy Mardi Gras Y'all!
Andy
Sounds like you are doing pretty well Andy. Very happy for you and the family.
Doing ok here too I think. Tomorrow is big day. Day +91 today. Tomorrow is bone marrow biopsy to see how things are going.
My counts have been a mixed bag. Hemoglobin down to 10.9 last week. Platelets continue to go up, now at 135. Neutrophils at 1.1, Eos at 1.2 They seem to have plateaued.
Please pray tomorrow for good chimerism results at 99-100%, pray for reduced mast cells in my marrow, eosinophils of less at 1.0 in my peripheral and neutrophils over 2.0 with increasing platelets and hemoglobin! That is my prayer! Andy, let us know how you are doing next update. Apologies again about truancy on my part....
John
We all become truant at times. I certainly have. I am thrilled with your blood results and praying for the chimerism numbers. I have a gut feeling that you are going to be very happy.
Cliff
Blessings
Julie
Tomorrow, after 6 months of being in Houston, I finally get to go back home to Louisiana! This journey has been a whirlwind to say the least. I'm glad I can close the book on this current chapter and begin to move on to the next.
2016 is looking to be a big year. I have a wedding proposal not too much further down the line and I'll begin taking classes in May as I pursue my Masters of Science in Health Administration. Initially, I was going to go the PA or nursing route, but I became a lot more concerned with and motivated to being an advocate for young adult cancer patients. I feel like I can best serve this purpose in admin role than in a direct care role. We will see how it all goes!
I'll continue to update as time goes on. I'm glad I had y'all to share my journey with. Each and every one of you holds a special place in my heart and if I ever end up in any of your areas of the country I will try my best to see y'all in person!
Andy
Time flies when you are having fun! I am so glad that you made it to this milestone and will be able to return home. 2016 is going to be a great year for you in every way. Returning to good health is #1, but all of the other things you mention are exciting as well. I think that you are choosing a great degree program and profession. We all feel that we should give back to others in some way, after we have been the recipients of the generosity and expertise of so many.
Where in Louisiana do you live? You just missed Mardi Gras, I think.
Best,
Cliff
Davej
I went to Stanford today for the "homeward bound" class as I now have graduated from the post-transplant clinic (up to day 100ish) to the regular clinic. If I didn't already live within driving distance I'd be able to go home at this point, but thankfully we were able to move close to Stanford for this whole process.
My wife and I stopped for dinner on the way home, another milestone as I am allowed to eat out. I have been craving sushi like crazy, but unfortunately still can't have raw fish until I'm completely off tacrolimus. We stopped for sushi anyway and enjoyed eel and avocado rolls, and even half a glass of wine. The little things are so much more exciting now. I hope I can always remember to appreciate that.
Thank you to all of you for helping me get here. I hope to stay on these boards regularly but I'm sure I will fall off now and then. If anyone wants to find me on facebook I'd be glad to connect there too - I think I am the only John Marburger.
John