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.
Just want to give everybody an update on what was going on we checked out of the hospital on Thursday went in for first labs yesterday whites 2.6 platelets 219,000 red 11.1 anc 1000! The docs were shocked and impressed with his counts so They ended up a having bone marrow biopsy yesterday to confirm complete remission and she just called and there's no leukemia blasts or leukemia in his bone marrow at all, confirmed complete remission! I am so grateful for these results and for all of the support we've gotten through our first stage of relapse. They are filtering through the best 6 of 10/10 matches right now and will move forward w transplant in/around June 20.
I am glad that we have about three weeks at home together as a family including our wedding anniversary which also falls on Father's Day 6/15 before having to get readmitted for transplant. It's bittersweet because we get to spend all of this time together as a family but in the back of our mind we are absolutely terrified about transplant and the possibility of serious GVHD or mortality:(
Needless to say this is an area that Tony and I do not have experience in and I talked to him about all of you how helpful you've been and he's eager for me to get as much info from any of you have gone through it.
I'm not gonna lie, some days I'm mad as hell; I can't believe that this has happened or is still happening to our family, but I know in my heart he's going to be okay and that the reason why he relapsed now is so that he could get a transplant while he was still young and healthy and he can be cured of this aml monster once and for all.
I continue to pray for all of you...patients, caretaker's, family members and friends and for hope and peace and strength to endure every battle that comes our way!
Xx
Lea
I am glad that we have about three weeks at home together as a family including our wedding anniversary which also falls on Father's Day 6/15 before having to get readmitted for transplant. It's bittersweet because we get to spend all of this time together as a family but in the back of our mind we are absolutely terrified about transplant and the possibility of serious GVHD or mortality:(
Needless to say this is an area that Tony and I do not have experience in and I talked to him about all of you how helpful you've been and he's eager for me to get as much info from any of you have gone through it.
I'm not gonna lie, some days I'm mad as hell; I can't believe that this has happened or is still happening to our family, but I know in my heart he's going to be okay and that the reason why he relapsed now is so that he could get a transplant while he was still young and healthy and he can be cured of this aml monster once and for all.
I continue to pray for all of you...patients, caretaker's, family members and friends and for hope and peace and strength to endure every battle that comes our way!
Xx
Lea
dave j
These days they have become much better at recognizing and treating GVHD. They tell me a little is actually good, it indicates the important GVL effect which is the major benefit of allogeneic transplants. If they go with a reduced intensity conditioning it's important that GVL is achieved.
I'm in my 18th month post transplant. I had reduced intensity conditioning, perfect match sibling transplant, good remission going in, FLT3 positive. I was 52 at transplant. So Tony is a better candidate than I was. Transplant was uneventful for the most part except for some fevers and headaches which kept me in the hospital about an extra 2 weeks, I have had mild but persistent GVHD that continues to this day. I currently take no immunosuppressant drugs, but that is a recent development. Believe me, you can live with the discomforts of mild GVHD, it's really no big deal. The benefits greatly out weigh it. And the doctors will make sure they keep it at a manageable level.
He may have some fatigue for a while but in a few months his energy will return. I was able to work from home not long after I was released, worked my way back to the office part time at about 6 months and was back full time a couple months afterwards.
Put in simple terms, your body wasn't made to work with someone else's bone marrow so you're going to have some rejection, it's inevitable. But once the cells learn to play nice together things will be back to normal and he will be rid of this heinous disease once and for all. Good luck and come around every so often to let us know how things are going.
Lou
Everyone is different in the way their body handles all the drugs and treatments for the transplant.
My mum felt a lot sicker with the drugs for the BMT, but the nausea that she had was not going to keep her down.
Keep up the positivity it helps !!
xoxo
Since I am new to all of this I have no experience to offer up for you and Tony, but just wanted to offer my support and tell you that Tony has been in my prayers since I joined this site.
I am sure that things will go as planned and you will be rid of this monster once and for all.
Take care
Karen
My husband Sal relapsed after chemo-only at the end of December, got his transplant on April 29 from a sister. He had a myeloablative conditioning regimen with four days of outpatient TBI (total body irradiation) three times a day, and one day of inpatient chemo (etoposide).
The hardest part for Sal was the MUCOSITIS from the post-transplant small doses of methotrexate chemo he received on days 1,3,6 & 11 to keep the new cells from coming on too strong. The mucositis was really awful, and there's nothing the doctors or nurses can really do to help with the discomfort. You just have to wait until they stop the methotrexate and the white counts come back, then all is better very quickly. Sal had a fever at one point that they couldn't figure out, so they pulled his PICC line for a couple of days, which took care of it.
He was in the hospital for three weeks and three days. He's been home for a week so far, and is doing fine. He was pretty sleepy for a few days, and we need to make sure that he's drinking enough fluids. He's eating very well. Friday (today!) is Day 30. His counts have been really good: WBC 3.1, platelets 103, hemoglobin 10, ANC 1.26.
Well, that was Sal's first 30 days. The next 335 are a mystery, though.
xoxo
Monique
Dave J.
Debbie
So so happy to hear Tony is in remission and that you ask have time to prepare for bmt. Praying for cure once and for all.
Julie
Lea,
Good luck to Tony and your whole family. My wife Christina will have her SCT tomorrow. It sounds like he is doing well and he will be fit and ready for the procedure when the time comes. The conditioning chemo my wife received seemed to be harder than the 4 previous rounds in the last 5 months. She has made it through and now it is just the transplant to look forward to. I will send positive thoughts your way for a successful outcome! Take care!
Tom
The transplant will be the culmination of all of your hopes and prayers. I feel it in my transplanted marrow that your loved ones will ace this last test and will both be able to put all of this horrid stuff behind them. Regaining one's health is a real HIGH! Tony and Christina do not need any luck, because their lucky charms will be there sitting right next to them...I don't think you need to ask to whom I am referring. Take a wild guess! It's the two of you.
Cliff
Since there are many confirmed matches willing to donate we now have to figure out which route we want to go we ask you have a Mail young donor who is willing to donate marrow instead of just themselves has anyone experienced this I ask because he's also an ABO match for Tony. The only problem with this is that he's not available until after June 25 and with Marrow donation it's a little bit longer of a process for the donor which would put us into July pretransplant and Tony's doctor doesn't wait that long without giving him a consolidation round (which we were desperately trying to avoid giving him more chemo) as most of you know our fear nature pia is pretty severe based on what happened w my dad and Tony's two infections
So do we go with the marrow donation and do around of consolidation possibly next week or do we go with ABO mismatch stem cell transplant 10/10 donor
I know that having this many perfect matches is such a huge blessing but now we're feeling the pressure and stress of having to make a decision that we don't want to look back upon and regret
We were at peace with her last doctor's visit and the transplant date being set for June 20 now things might be changing and that always causes me severe stress. Oh and of course they've also offered to clinical trials for us to sign up for however one of them does not seem ideal for us and the other one is a pilot study that they're only doing here at the University I'll type more about that later
It should say ...
We actually have a "male" young donor who's willing to donate marrow instead of "just stem cells"
And fear of neutropenia (not nature pia ) lol
It is of course the two of yours decision. My advice is get in and get it done as quickly as possible. I wouldnt mess around with another round of consolidation unless the doctors are saying that is going to give him a way better result. And i doubt they will tell you that.
Prayers to you both to get this done and cured.
Dave J.