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
Wow, have you been through the wringer, or what? I trust that someone will correct me if I am mistaken, but I don't believe that bone marrow transplant is regarded as a "better" or more sure path to cure than SCT. I make this point only because you seem torn between the choice of the longer wait -(plus a consolidation chemo) - BMT option vs. the less long wait - SCT regimen. If I or my husband were faced with this, we'd elect the SCT (especially with the availability of the 10/10 match.) I'm afraid I don't know what the acronym ABO means.
You and Tony sure deserve a break, though, and I'm sure you are aware that you have the prayers, love, and good wishes of this entire community. Time for you and your family to put AML behind you once and for all! Please update when you can, and let us know what we can do to help you.
Robin
Dave J.
As already mentioned you guys have the prayers and support of us all for the duration.
Dave j
Now the one study that were thinking about enrolling in is a study where you're conditioning treatment is Fludarabine plus Bulsulfate plus Campath (which is a T cell depleter) and if after 50 days post transplant you do not have any GvHD they infuse small amount of the donors T cells (that they have saved separately) and continue to reintroduce the T cells to you over weeks to months and so it may cause your immune system(if tolerated) to return faster or it could cause mild GVH D issues once they're introduced. It's called DLI or donor lymphocyte infusion.
I'm torn on it -Tonys liking the concept. Thoughts?? Here's a quick link
http://www.clinicaltrials.gov/ct2/show/NCT01839916?term=University+of+Chicago&cond=%22Leukemia%2C+Myeloid%2C+Acute%22&rank=3
Dave J
Sal had a sibling donor identified months prior (if relapse occurred), but he still had a consolidation round after his re induction. We wonder why still, but maybe it was to accommodate scheduling in the transplant ward? Sorry I couldn't be more helpful.
Just my two cents, I've read a lot about DLI where it's used if leukemia cells are detected after transplant. I think it's great.
xoxo
Monique
.The plan is if I do relaspe, god forbid, they will they will give me the t cell depleted stem cells and take me off all immune suppression. They didn't didn't call it DLI but I'm pretty sure its the same.
I cannot remember the interval between my last consolidation and my transplant. My transplant was a t-cell depleted type, but I never got any DLI afterward. The theoretical downside to what I received is a lack of GVL effect. The upside is that I was never on prednisone, tacrolimus, sirolimus or any immunosuppressive regimen and never had one day of GvHD. My CD4+ cells were very low for quite a while, leaving me open to a possible opportunistic infection, but the Mepron and Acyclovir kept those at bay and I have done very well. My CD4+ count was in the low normal range some months ago and I will be having it checked again soon. If it is good, I get the last of my inoculations, mumps, which is a live virus.
Tony will do very well and I am quite confident about that. He is getting very close to recovery and June 20 will go without a hitch.
Cliff
You guys are the pros& I need help - thank you
Since you had the t-cell depleted transplant, what are your thoughts on the DLI (donor lymphocyte infusioon) study I mentioned that they offered us???