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
Twilight
Andy, sorry to hear you caught something. If it is viral... did they give you any new meds, or does your new immune system have to tackle it? I know they keep me on acyclovir for a year and you are probably the same but I don't think that helps much with cold-type viruses.
I'm still trucking along here. Had a stress echocardiogram on Friday and am nervous to find out how my heart is holding up with the return of these darn eosinophils. I should hear this week. My eosinophils keep going up but only very slowly (they are 7.1 and 62% of my WBC as of Thursday) and I really hope I am near the top before they start a slow and steady decline. I met with my primary hematologist Thursday to talk about the plan forward. He wouldn't give me a prognosis as I am now officially in "uncharted territory" but when I asked if he was worried he said he wasn't worried, but disappointed. We will continue to monitor for the next month, and if they don't budge on their own with the help of my donor immune system, then we will try one of two experimental drugs, mepolizumab or benrolizumab. Both are IL-5 inhibitors that are intended for asthma and other eosinophilic disorders but may help with me if my disease really wasn't cancer but was some sort of reactive process all along.
Merry Christmas everyone! Sending love and prayers to all of you as always.
John
Thanks for the birthday wishes. I spent a wonderful day and evening with my entire family, which is something I don't get to do often. My son is in med school in Pittsburgh, but is home for Christmas, and my younger daughter is nearby at Yale, but is an intern and goes in to make rounds at 4 AM and so is generally sleeping when we come up to visit! It was fantastic. There were huge parties going on and everyone was singing Christmas songs.
With regard to you. Take a deep breath and enjoy Christmas. I still believe that this eosinophilia will resolve. If you need to take an IL-5 blocker, you should tolerate it well and it will be diagnostic as well as therapeutic. Your attitude is perfect and that will help you in every way. Enjoy your family, and give them special hugs.
Be well, because YOU WILL BE WELL.
Cliff
Twilight and Lea. Thanks so much for the birthday wishes. Birthdays take on a different significance after AML. They are precious milestones. By the end of March, I will have survived 5 years! I continue to recover from my back surgery. In a funny way, having had something that so many people have (a bad back) makes me happy. It is not AML, but a normal problem. LOL.
Time does indeed heal all wounds. I want both of you and everyone on DS to be upbeat, optimistic, and hopeful. Enjoy Christmas and spend 48 hours (Christmas eve will be 71 in Manhattan and 64 where I live in CT) NOT THINKING ABOUT AML, transplant, speed bumps, infections etc. Life is good. Be a bit selfish. God will reward you for that (believe it or not). Happiness is no sin.
XO and Merry Christmas,
Cliff
Had my Day +42 follow up today and got some answers but raised more questions.
My counts have been trending down most notably in the platelet department. Last week they drew blood for a variety of cultures and only one came back as positive, Epstein Barr (EBV). They said it was positive but not necessarily in an overbearing amount.
The next part of the plan is to have my bone marrow test tomorrow and they will also check to see if I have an EBV in the bone marrow. From my understanding if that comes back positive for EBV, they may look at ordering a CT because in immune suppressed patients, EBV is known to cause some forms of lymphoma. It looks like if need be Rituxin will be used to help keep it in control.
I was a pretty nervous wreck this past weekend and especially yesterday with all the upcoming tests this week, but amazingly enough, I feel more at peace today even with all of the uncertainties.
My devotional this morning described my life right now down to the fine details. It reminded me that God is not just with us but also in our circumstances, and although he does not bring about harm to us, when we suffer He uses it for good. Exactly what I needed to be reminded of at this point in the process.
I hope everyone has a great week and a very Merry Christmas!
Andy
Merry Christmas/ Happy Chanukah everyone and may we all (and our loved ones) enjoy time with each other tremendously this year
Lea
I am going to stick my neck out. about your EBV......There was one time when my EBV titer rose quite significantly. It then came down and has no longer been a problem. Yes, it is true that post-transplant an elevated EBV titer can be associated with lymphoma, but in your case, I really doubt it so soon after transplant. In my case, I did not have a CT. Rather, my EBV titer was repeated, I believe two weeks later and it fell precipitously. It was then repeated again and was even lower. Do you happen to know what your titer was, although even high titers do not necessarily signify any significant and lasting problem.
DO NOT FRET, as Lea would say. Enjoy your Christmas. You should do what your doctor tells you to do, but I would certainly not be gloomy about something that is likely to just go away.
Cliff
I didn't get a specific number, but they made it sound like it was on the lower end. I'm fine with there being enough detected to explain some count fluctuations, but at the same time I don't need all of that other baggage that can accompany the other extreme.
Andy
Good attitude. By the way, you can expect fluctuation in your counts for quite a while. Again, it goes with the territory. Not to worry. Just rejoice in the fact that you are on the way back to normalcy.
Merry Christmas.
Cliff
Twilight
My congregation has been praying for all of you by name along with me and recently I updated them with your great progress thus far along with your speed bumps.
The leadership team that prays over requests and praises provided this verse that is so timeless.
Praise the Lord, praise God our savior! For each day He carries us in his arms. Psalm 68:19
Andy,
As your devotional reminded you, HE is with its always.
John,
Praying for you always
Susan,
I think cliff and I are the only ones on here that avoided the big c-diff. Praying for your brother, Dave
CC,
wondering about Jack
Scott,
Thinking and praying for you
SteveKazoo,
We have not heard from you for so long?
Wishing all of you and your family's a merry Christmas and a blessed 2016!!!
Julie
Thank your congregation. Merry Christmas to all.
S
Yes, people certainly survive c diff. I am chemo only, no sct; however my med team tike me to expect c diff. By the grace of God, I dodged it. Dave will overtone this without a doubt.
Below are just a few conversations on DS about it.
http://www.dailystrength.org/search?q=c+diff&t=discussion&community=Acute+Myelogenous+Leukemia+%28AML%29
Praying for You and Dave
Julie
DaveJ
Jeremy had c diff during his transplant recovery.
You are all in my prayers.
Merry Christmas
Karen