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
Andy, how are you doing?
I believe it 100%. What a wonderful bit of news to open my eyes to this morning.
Cliff
I'm super happy to hear your results back! I'd be lying if I said that your recent visits weren't weighing on me. It's great to see when although the numbers don't totally make sense that God still makes a way.
I had my visit in clinic again on 12/10/15. My labs all look acceptable. I am experiencing some platelet fluctuation, but nothing that seems to be concerning the team. This is the first time since I was inducted for my first bout with AML back in February of 2014 that my white count has been in range for several blood tests in a row. I was always around 3.0 WBC.
Being that MDA is a teaching hospital, studies are always being thrown at you. My doctor mentioned that a research nurse would come talk to me next week about one and that if I qualify I should do it. This was kind of a surprise to me because except for a friend of mine who had a stem cell transplant 17 months ago and took an oral chemo for a little while because she had a mutation that kept showing up on her BMB I haven't really heard of anything other treatments taking place after transplant.
I'm going to evaluate it and see what the risk versus reward is. Last year, when I was under a AML chemo protocol, I was ready to throw in the towel after my 5th round and forgo the final two rounds because the results looked great and the physical toll was starting to add up. However, mostly due to some doctor pressure, I finished out the protocol only to relapse about a year later. Would I have still relapsed had I not done the final two rounds? Maybe, maybe not. But, I know had I relapsed and not done the final two rounds I would have always wondered what if i would have finished it out.
That being said, this would have to be some pretty lightweight stuff to get my attention because after all I've been through, I'm not really interested in being another experiment if it's a harsh protocol. Sometimes, I draw flack for referring to myself as an experiment occasionally. But, because of my age, they try a lot of the new higher doses on me and are always recommending more studies and at some point you begin to feel less like a patient and more like a test subject. I'll be sure to let y'all know the jist of the study once I find out more information.
Andy
Praying for an easy go and the cure for you guys, thanks for the continued excellent updates.
DaveJ
So pleased you have been given this good news. Prayers continue.
Do not worry. Infections are par for the course. They will get it under control quickly. "Speed bumps" are unavoidable and go with the territory. He will be fine.
Cliff
DaveJ
All of us who have been through the worst know the truth about the recovery from AML. Yes, there have been a few of us who simply sailed through treatment essentially unscathed, but the vast majority of us have not. We have had our share of fungal pneumonias, bacterial and viral infections, fluctuating blood counts and "speed bumps," too numerous and idiosyncratic to enumerate. There is a lot of faith that goes into this, and I KNOW that faith in God abounds in this group. That is why I know that John and Andy and Twilight's brother will get through the ups and downs. I did!
Cliff
Today is Day +38 so I feel like it's time for an update. My counts are stable with the exception of platelets which keep dropping. I received a platelet transfusion yesterday along with getting blood drawn to check for an array of viruses. My NP said that there are viruses that can lower your counts yet they are asymptomatic. I also had some blood drawn for my first chimerism check and I will be having my bone marrow test on Tuesday. So in short, a lot is going on. Kind of like I'm taking finals for the fall semester.
I felt fine all day yesterday, but after dinner I noticed that my throat was beginning to feel scratchy which historically for me means that I'm fixing to get sick. In the middle of the night I awoke to a very raw throat along with a low grade fever. My amateur opinion is pharyngitis or strept. I don't usually get strept, but everything is different now. I'm on an antibiotic, but if it's viral, all I can do is wait. Sometimes, I forget that if a healthy person with perfect counts can get sick that I am absolutely a candidate for illness, yet it's always an initial shock when it happens.
Other than that, I don't have too much to complain about. Physically I feel ten times better than when I was discharge almost three weeks ago. I'm not sure about everyone else's journey, but I really struggle with the psychological aspect of the process. I'm following up with my psychiatrist at MDA in a couple of weeks and may arrange to meet with him weekly during these very intense times.
John, I hope all is going well with you and in case I don't have an update before then, I wish all my friends a Merry Christmas!!!
Andy
On my brother, update. It was C-diff. He was in the hospital for five nights but sent home today. He sounds so much better. Docs continue to be pleased with the blood numbers so Andy and John, take courage from that. This my brother's second go around. So far, the future looks hopeful.
May all three of you live to be inspirations to others down the road.
Merry Christmas, Happy Holidays, and Blessed New Year
Twilight
Love to all,
Cliff
But it is cold and flu season's so stay as far away from everybody as you can wear a mask as much as you're comfortable doing, and wash your hands as much as humanly possible. Tony is 17 months out and he still catches colds extremely easy that are caused by viruses.
Andy It sounds like your medical team will be all over the case if it's strep or something else. I'm glad that you're already on an antibiotic! If it's a virus they do have other options if you needed.
Cliff... Happy birthday friend! Hope you get spoiled
Xo