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
Thank you so much. This site has been a wonderful resource for me too. I had no idea where to begin when my brother was diagnosed in Feb of 2014. I was not privy to the doctors firsthand and I had so many questions. I have always felt comfortable asking and posting. Sometimes I feel guilty that I seem to take more than I give but this is because I feel i have limited knowledge to guide others. But know my prayers do include all on this site as they and their loved ones meet this struggle on a daily basis.
My bro belongs to the 2014 and 2015 team! We are praying the second time is the cure.
Best to all, especially Andy and John who are about to embark on this journey of hope.
Prayers
Susan, aka Twilight
Thank you so much for posting this and keeping my family and me in your prayers. We are very thankful for this support group and the group of transplant warriors for this year and the years past.
We are still on track for checking in the same day as Andy. The donor agreed to the new timeline as well so we will be getting fresh stem cells instead of frozen.
I echo your call on hearing how Scott is doing. I talked to him in July and would love to hear how he is progressing.
I read through Laura's entire blog yesterday. Wow....it sounds like it is going to be a major process to get through this. I continue to pray for strength and as few complications as possible.
John
It's a group I never saw myself having to be a part of, but here I am. Once my treatments ended last year, I tended to just kind of worry about my life and I didn't return to these forums all that often. Having now gone through this again and on my way to transplant, I will be back here constantly and into the future to help answer questions and assist those who need help in any way that I can.
You set a good example about still being a source for people and encouragement to those even after your treatments were completed and it is a blue print that will touch and inspire others.
On a side note, as of my schedule now, my Day +100 will be the day before I was diagnosed back in 2014. If that isn't an illustration of "coming full circle", I don't know what is haha.
Andy
So great to hear from you! !!! That is crazy that day 100 lines up with your dx anniversary. Praying for you daily.
Scott,
You are such a rock star. So great to hear you are doing so amazing. Praying for a great check up with great results.
You two are my inversion 16 brothers and I'm prayingfor you both.
Blessings
Julie
Great to hear from you! Don't go so long between check ins. Andy and I will use this thread if possible to bounce stuff off of you.
Andy...one week!
V.r
John
You guys will do great!
It's been such a blessing to share and ask questions via this forum. I am extremely grateful to Julie, Cliff, Dave as they are always so insightful and positive and so absolutely encouraging especially during those rough times which we all go through.
As an update, today was the third week Jack didn't need any transfusions. Although his numbers are still low...platelets hovering low 20s and Hg around 8.8 and he's still injecting himself with insulin, it's all going in the right direction albeit slow. I am just so thankful he's home with his family.
Andy, did your protocol start? My family is praying hard for you, my brother in transplant.
Lora, happy belated birthday!
John
DaveJ
I started my protocol this morning (4 am to be exact). My protocol consists of Fludarabine, Clofarabine, Busulfan and an oral medication called SAHA . All 4 will be administered over four days. Since previous patients tolerated low dose SAHA well, I get to be the first person to try the next highest dosage (insert sarcastic yay).
Needless to say today has kicked my butt extremely hard. I knew it would be tougher chemo, tougher experience, etc. but I must say I'm a tad discouraged as to how hard it wiped me out today. But, I have one day finished and that much closer to getting my new stem cells.
You'll definitely be in my prayers too John because if your experience is anything like mine is, I know that it can be a bruiser. Stay strong my friend!
Andy
Praying for both you guys, If I can do it, you both certainly can.
DaveJ