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 know as well as I that you cannot live in the NY metro area without becoming at least part Italian. The Christmas custom of the 7 fishes is unmatched and a tarantella is fitting when one of us gets good news. I think it should become a ritual. Don't you? Either down the isles of Costco or Staples or any place where everyone can sense the joy (or craziness). Beating AML is a real prize. To go from despair to happiness in a relatively short period of time (It seems long when you are in the midst of it, however.)
You and I are survivors. We need to make sure that we make that clear to everyone on DS. That is the goal and it can happen. We should never look down at our feet but rather at the horizon. Sure, there are a lot of anxieties, frustrations, "speed bumps" that can make progress seem impossible. But it is possible and probable. All of the torture just makes victory that much sweeter.
Cliff
Sorry for the radio silence. Been enjoying the holidays and let the time start ticking by a little quicker as a result. Can't complain about that though - today is day +50! Halfway to 100 and if things go as planned, I am done with the much tougher half. Andy, I am thrilled to hear your amazing bmb results! Have your platelets started coming back up yet? Mine finally have... Slowly... they are back up in the 90s. Yet they were 230 a month ago. They really do jump around a lot. My eosinophils have finally trended down! They reached 7.1 at their highest and now they are down to 3.2 as of Monday. My wbc was 6.5 so this is the first time in several weeks that they have been less than 50% (49... But I'll take it). I started bactrim last week and that causes all the counts to go down a little I gather, including my neutrophils which are down to 1.3 but no one seems worried. Hemoglobin is holding steady in the mid-12s.
In other news I got a pass to leave the area for an overnight last weekend, so the family and I went down to visit good friends in Carmel Valley about two hours away. It was so great to get out and see friends. We did one of my favorites hikes from when we lived there, almost 4 miles and 1300ft elevation gain. I didn't set any PRs but I felt great and didn't slow the group down.
Happy new year to everyone!
John
I am beyond happy for you. THIS WILL ALL WORK OUT!!!! You are doing great and I am sure your doctors are happy. Welcome to the other side! You will continue to improve.
HAPPY NEW YEAR TO YOU AND YOUR FAMILY!!
Cliff
Glad to see all the good replies see that everyone is doing well. our family's been struck with the stomach flu first myself then Isabella and just this morning Tony he was our hero he took amazing care of Izzy and I for two days straight 400 loads of laundry and lots of cleanup duty
I'm obviously concerned on how his system will respond. my flu was horrible, lasting over 48 hours & I had almost 103 fever Izzy's was much more mild and I pray to God Tony gets the least of it. he's got his 18 month check up on Jan 13th as well I anticipate normal labs will be run and probably some additional ones as well plus A chimerism I'm sure
prayers for continued health for my husband please and all of you happy new year
we have our 18 months post transplant check up on this Wednesday, I can hardly believe it was 18 months ago such a world wind, we haven't had a check up since end of November
As always I graciously ask for prayers for great labs for Tony and hopefully the end of his digestive dilemma
Xoxo
Lea
Praying specifically for great results this week and the end of the flu!
Blessings,
Julie
Tony will be perfect. You and your family are always in my prayers. Keep us posted on your celebration!
Cliff
Prayers all goes well.
Twilight
Jimmy is also having his BMB on Wed (6 months).
It will be a good day :)
Margaret
I'm on Day +64 and the talks of going home are starting to begin! I've been fairly stable since my EBV dealio back before Christmas. While my counts are still recovering, albeit slowly, they are staying incredibly stable. Short aside, when I received 8 months of chemo in 2014 for my first bout with leukemia, I never had stable counts.
My Day +100 bone marrow test is scheduled for 2/15/16, which is actually my Day +98, but I did Day +30 bone marrow on Day +43, so it all evens out in the long run haha. After meeting with my doctor the other day, it's possible they may let me go on Day +80 or +85 and I would come back for my bone marrow.
It's just small talk now, but after being away from home for 5.5 months, any talk of home is good for me.
John, how are you doing, sir? I've realized that we are basically stem cell twins since we were less than a day apart.
Andy
Margaret, it won't be a good day, it will be a GREAT day!! I have total confidence in Jimmy.
Andy, it will be so fantastic to be sprung from the slammer. Your bone marrow too will be terrific.
Happiness all the way around!
Cliff
Andy, it's great to hear an update from you, and especially a positive one at that. Just curious, what do your stable counts look like? Other BMT folks please chime in too! I guess my counts have been pretty stable but I don't even know what normal is. My platelets have been in the 90s for several weeks, though today I was pleased they jumped to 116. Hgb has been hovering between 11.5 and 12.5 or so for the last few weeks. My WBC has been going down steadily, but almost all of that has been the darn eosinophils finally going away. Today they reached their lowest since they returned - 1.08 (they were as high as 7.1 about a month ago). My neutrophils are lowish, today clocking in at 1.35. I think my WBC total today was 4.2.
So, all in all my day +63 labs were great. For some reason, though, I haven't been feeling great the last few weeks. I've been more tired, achy, and super itchy. So itchy and achy that I am having trouble sleeping, which makes the cycle continue. My headaches have abated the last few days, but now I have an old shoulder injury that's been bothering me, I think since I started lifting again with light weights.
I continue to be thankful for no signs of GVHD, no infections, and the declining eosinophilia. I feel guilty sometimes for complaining about the non-life-threatening things, but at the same time, I really am ready to find a "new normal" that everyone talks about. Chronic itching and near constant achiness and fatigue can't be permanent!
John
When my little family gets on our knees, please know without a doubt Tony, Jimmy, Andy and John are at the top of our list. My little 11 year old prayer warrior, Trinity, is an amazing prayer. I agree with Cliff, great results all around!
Blessings
Julie