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.
We are at day -2 and things have been pretty much as you all have described, chemo week is basically uneventful, except for the significant rash and hives tony developed from the t-cell depleting chemo drug "Campath". Most of that has resolved by now, I may post a few pics to show how nasty it was. He tolerated the high dose busulfan phenomenally, has great energy and good appetite still. No nausea, just a little sleepier from some of the other meds given to support chemo toxicity. We walk 3+ miles a day plus I was able to bring izzy for a visit, which always helps recharge tony.
The team graciously switched our room on July 4 so tony could have a view of lake Michigan and the stunning Chicago skyline for the next month. we were able to watch around 50 firework shows going on at the same time from the view from his room, which was pretty neat.
Today he gets a visit from Psych (:-/) and then hooked up to the Tacrolimus/Prograft. His counts are still good, dropping slowly, not sure they will be at zero (peripherally) by Thursday. I've been told this is of no concern if his blood counts are not at zero bc his marrow is most likely already empty after 5 days chemo (Flu+Campath+Busulfan) Transplants scheduled at noon-ish Thursday and we will have Tonys siblings and parents here, as well as Father Caruso from Saint Ignacious to bless the cells.
We continue to ask for everyone's support and prays for a successful and curative transplant, and continue to pray for each and every one of you along this road to restored health
Xxoo
Lea and Tony
The team graciously switched our room on July 4 so tony could have a view of lake Michigan and the stunning Chicago skyline for the next month. we were able to watch around 50 firework shows going on at the same time from the view from his room, which was pretty neat.
Today he gets a visit from Psych (:-/) and then hooked up to the Tacrolimus/Prograft. His counts are still good, dropping slowly, not sure they will be at zero (peripherally) by Thursday. I've been told this is of no concern if his blood counts are not at zero bc his marrow is most likely already empty after 5 days chemo (Flu+Campath+Busulfan) Transplants scheduled at noon-ish Thursday and we will have Tonys siblings and parents here, as well as Father Caruso from Saint Ignacious to bless the cells.
We continue to ask for everyone's support and prays for a successful and curative transplant, and continue to pray for each and every one of you along this road to restored health
Xxoo
Lea and Tony
Tony is in my daily prayers.
Karen
xoxo
Monique
Lora
It all sounds great. It sounds like you don't need to tell Tony to keep exercising. He is already doing it. Just keep him eating and enjoying life.
Cliff
DaveJ
His whites (3.5)and Heme (10.9) are steady and stable, platelets were 46 on Saturday discharge, 51 Monday, but 43 yesterday :(. I know a lot of people said the platelets jump around a bit, early after transplant. They've been on a slow but steady rise since day +8 so of course I was bothered by this. Docs said this is "not unusual"
Any input is greatly needed&appreciated
Thanks all!
Xo
Lea
Tony's platelets will be all over the place for a while. You might jump for joy when they hit 100,000 only to be 80,000 the next time. That means nothing. Don't hang on each count. It is not worth it. He sounds as if he is doing great. I never get sun anymore (used to be perpetually tan). We should all stay out of the sun and use sun screens.
Cliff
It is a good sign that the docs are praising his progress, they wouldn't do that if there were any doubts. Good news!
DaveJ
My prayers and thoughts are with you on this special day. please keep us all in the loop. --I have my BMT probably end of August and while everyone is different, your updates assist me in trying to come to terms with this myself-- it is too much of an unknown to do by myself and you give me strength. Thank you . . . .Laaryssa
Happy to hear all is progressing well. My husband's skin is different since the transplant, he used to be on he oily side and now is dry. Could be the meds too, many of them advise to stay out of the sun. I know how relieved you must be to be on this side of the transplant and moving forward.
Great news!
Colleen and Harry
So glad that things are going well. I am very impressed that he is ready to be home already! I have heard of very few people who make it home so quickly! As for the platelets, from what Julian's oncologist said, 43, 000 and 50,000 are basically the same. In fact, apparently there is no real difference between 246,000 and 177,000 either! If it's normal, it's good. If it's low and steady it's good (during recovery anyway). I am betting that things might do a little more up and down with transplant. It seems like I hear more about lower numbers from people who have had BMT, but I cannot say from experience. I understand obsessing over numbers though, It is so hard not to--they are the lifeline for AML patients. When they are good, all is well. When they are not good, everything goes haywire (even if things might be okay). If I had it my way, Julian would always have nice, consistent, mid-level numbers for everything. I've read stories on one or two kids' pages where that is the case. It makes me jealous! :) That's crazy too, because I realistically, I think I would worry either way. Praying for complete healing,
Jacki
I think Jacki's comment was right on. I too believe that those of us who have received a BMT have more capricious cell counts. That is likely because the marrow has to get accustomed to its new environment and that takes a little while. I even had difficulty maintaining my ANC after several months of no problems. It eventually resolved and I have had no problems since that time.
Never worry about the exact numbers, expecially about the platelet count, which can vary considerably from one blood draw to another. The Hgb is the most stable number, because red blood cells live a long time (4 months), while the other cells have very short lifespans.
I too am amazed at how quickly Tony got sprung from the slammer. I got out on day 23. My counts were fine earlier than that, but I was not eating well. I finally tricked the nurses into thinking that I was eating by flushing my food down the toilet. That got me out of the hospital, but the flip side was that I could hardly eat at all. I survived and it will be 3 years post-transplant on Sept 8, my second birthday.
Just keep making Tony's favorite foods. For quite a while, I could only eat three things: eggs, pasta with marinara, and grapefruit. that was my entire repertoire for many weeks. So if he is eating more, just keep him eating as much as he can.
Happy for both of you and of course for that little Izzy.
Cliff
He can't even have water right now.
Enjoy each day and moment and keep up the improvement