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.
BMT completed 20th March 2014
Just to update you, Mum is doing really well... she is walking again, all be it with a walker but its improving all the time.
When she came home, she was only able to walk say 10 meters assisted, now she spends more time out of the wheelchair than in it. She was in it Sunday night and only really used it today as she had her monthly checkup.
So checkup
Hb 145
WBC 5.5
kidney / live normal
platelets 90
The platelets they are not worried they say its just normal to be low and slow, she has one week they may be up to 109 (highest they have been) then they go down and then then go up, they did show mum her chart and its like a big wave... last fortnight they were 86 so its on the up wave again.
That stupid (but important ) Cyclosporine she is being weened off, reduced again today and then again in 2 weeks... Can not wait as we all think this is the source of the non-walking problem (each time it has reduced she has improved).
Anyway all is good, she feels great and learning to live with a slight disability at the moment, is better than other outcomes :)
Just to update you, Mum is doing really well... she is walking again, all be it with a walker but its improving all the time.
When she came home, she was only able to walk say 10 meters assisted, now she spends more time out of the wheelchair than in it. She was in it Sunday night and only really used it today as she had her monthly checkup.
So checkup
Hb 145
WBC 5.5
kidney / live normal
platelets 90
The platelets they are not worried they say its just normal to be low and slow, she has one week they may be up to 109 (highest they have been) then they go down and then then go up, they did show mum her chart and its like a big wave... last fortnight they were 86 so its on the up wave again.
That stupid (but important ) Cyclosporine she is being weened off, reduced again today and then again in 2 weeks... Can not wait as we all think this is the source of the non-walking problem (each time it has reduced she has improved).
Anyway all is good, she feels great and learning to live with a slight disability at the moment, is better than other outcomes :)
It is sometimes hard for them to learn to live with slight disabilities (my mom had a stroke & is learning to live with her disabilities), she will overcome them in no time.
Karen
Here is my SCT update... I originally posted that my transplant date was OCt 1, however that donor fell through in the physical exam stage. I have new dates for my second donor... admit to the hospital on Oct 15 and transplant on Oct 29. I have a long protocol due to an NK cell clinical trial they are performing on me.
I'm really hoping that this donor works out. I've really benefited from reading everyone's progress lately, those who have recently had transplants and also those from older threads. I'm really looking forward to getting on with the transplant. Feeling like my life is on hold right now.
Lora
WBC 4.1-5.0 usually
Platelets 89-97 range
Heme 12.0-12.7
ANC 2.8-4.0
Around day 50 his doctors approved Tony and I to move home (which is a little over an hour away from the hospital) that was a huge step for us because that means we get to be with Izzy 100% of the time.
Results from his 30 day post transplant bone marrow were 100% clean donor blood type changed over to A+ and he had 100% chimerism in peripheral blood as well as 100% donor cells in the bone marrow.
Since he never needed any transfusions or anything after transplant and has tolerated the oral magnesium tablets They removed his Hickman port catheter on day 50 as well & began tapering down his Prograf at the same time. and as of yesterday he is off of Prograf as well as done with magnesium!
He started running again and doing light workouts (short distances outside) on day+ 52. He battles daily with some upset stomach issues, & food intolerances, but he still has a great appetite. He definately struggles more in the mornings and early in the day and feels best at night. Really hoping it's not the start if gvhd of the gut, which would delay or disqualify him for the DLI study.
Since we enrolled in a "preemptive DLI study" we are scheduled for another bmt on day 90 and then the first donor lymphocyte infusion dose the next day. We are worried about the increased Gvhd potential due to the infusion but will continue to pray that his body in the donors continue to get along harmoniously throughout this infusion study
The benefit of the preemptive DLI as for the infuse lymphocytes to seek and destroy any residual disease as well as getting them off the immunosuppressants early and giving his "baby immune system" a boost.
On a personal note I'm still battling with anxiety mostly on the night before clinic visits and definitely during the visit but it is getting better little by little I have to say as the caretaker for him and izzy (she's now 26 months old) i am exhausted!!! still no real appetite and pretty much living on coffee. Mostly I am constantly cooking and cleaning non stop. I'm trying to get my business back on track which I had just launched six months before Tony's relapse but I know that it's a healthy outlet for me even to slowly get back into it I just don't know how I have the time or energy right now.
All of you are in my daily prayers and will continue to be! Xoxo
Lea
I am so pleased to see this update. Your Mum is such an inspiration to me. She has weathered so much and continues to prevail. I'm praying that with this reduction of cyclosporine she can pitch that walker.
Be blessed,
Julie
Tony continues to astound me with his resiliency. His counts are amazing and to be 100% donor at day 70 is such a great milestone. I truly believe he will be an inspiration to others.
Please, please take care of you. Being back to full stress work, raising three daughters and dealing with delayed anxiety after treatment from AML has taken a toll on me. I have sought help, maybe you should consider it. You need to eat, rest, breath and move. The same advise we get as patience, caregivers need to follow. You are such a caring, selfless wife and mother. Tony and Izzy need you well.
Praying for continued health for your entire family!
JUlie
Lora -
So happy to hear the plan! I relate to you about going from one donor to a second one. It's a tough emotional process. Glad you're starting soon! Are you getting any chemo in the mean time?
Lea -
Sounds like Tony is doing great. It's such an inspiration! And I agree, you must take care of yourself. Being a caretaker is so difficult. I see my husband and his incredible dedication and also how difficult and exhausting (and stressful) it is for him.
I'm doing well. Day +14 (yay! time does pass). My ANC today is around 4 (!) Hem 9.5 and PLT 22
My mouth sores are getting better, they're almost gone and hopefully they will heal in the next days, now that my (new) immune system is working. I'm retaining a lot of fluids, but that's ok, I know it'll slowly improve. I'm very weak, but I know this will improve as well.
And of course....can't wait to go home!
Abby
I know I need to take better care of myself but I really need to take care of them right now! going thru this 3x now is literally surreal! Besides the birth of izzy, I feel like I've completely lost 3 years of my life to this horrid disease. I don't even know what day it is sometimes
Our poor daughter has not been able to do things that little kids do, or make any friends, or go to swim lessons, baby ballet or even a zoo or park , bc we want to keep her germ free so tony can be safe and healthy and not at risk of catch a terrible virus! She is a super affectionate and loving child and now has started calling her stuffed animals her "friends" and all I want is for her to have fun, real friends and a normal life, but if these sacrifices mean she gets to keep her daddy, then it's a no brainer.
Love u all
:) Julie
Team Transplant 2014 is absolutely outrageous! I am without words so:
:) :) :) :) :) :) :)
God is good!
Love you all,
Cliff
Jeremy is doing well just 23 days post transplant and his blood levels are near normal. His doctors say they have never had an allo recover to these levels so quickly.
Thank you everyone for your continued prayers and support. Everyone is in my prayers.
Karen
thank you for everyone re my mum :) each day there is a little step of improvement .... just thinking at one point I said to her who knows in 6 months you can slide up from bed to let the cat out and that would be a great day :)
I never doubted she would be up and about again :)
xoxo
I'm amazed at Jeremy's recovery! I want a transplant like his! LOL So awesome.
Abby
So good to hear your feeling better! Yay engraftment!
No, actually, they aren't giving me chemo while I wait. Since May 12, I've had 3 rounds, with about 45 days in between because of slow rising levels. My last round was Aug 1-3, and my ANC finally reached acceptable levels for 4th round, but my transplant had been scheduled. After my first round of chemo, I was in remission, 0% blasts with .22% Minimal Residual Disease (MRD). After my 3rd round, the doc said I was in "deep remission" with 0% blasts and 0% MRD, so he decided to let me rest till my Oct 15 admit date. I'm so thankful for that. We actually took a little mini family vacation this past weekend to a resort nearby where my boys had a BLAST at the pool/waterscape area. It was nice to sit in the shade and watch them have fun. (almost normal lol)
Lea
Tony's treatment sounds extensive, and I can totally feel your anxiety. I hope that it eases up for you and that you can find some peace. Please don't feel guilty about Izzy's "lack of normal". When this is over, she will fit right into the regular childhood mainstream stuff. Children are so resilient. Hugs to you, I know that you are hurting about that.
Aussiemum
I hope your mum is continuing to do well!
Cliff
I have read the Transplant team 2013 read (well maybe half of it). I'm so happy that you are still here to provide support to our group too. You rock!
Hugs to everyone,
Lora
As many of you know, going back home isn't easy or simple and we know it's just step 1 that we're done with (while most people around us think it's all over...). And yet, there's nothing like being home.
Question for those who underwent a BMT: Today I started having the metalic taste in my mouth (until today food tasted normal....well not anymore). What foods did you find tolerable?
I tried a few different things but everything tastes metallic and terrible. Other than maybe sweet food, but that's definitely not what I need my nutrition to be, especially as I'm able to eat very little...
Any ideas, strategies or just sharing your experience will be super helpful.
Yay to being home!
Abby
I hope your transplant goes smooth.
Abby
Jeremy complained of things not tasting right and pretty much lived on Ensure during that time.
Karen
He is about day +70.
Just trying to catch up. So glad Tony is progressing well. Prayers for all
Twilight