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
Question- he is experiencing temperature sensitivity in his hands when he runs them under water. (Warm feels HOT) Anyone else have this? He is on Tacrolomus (Prograft) and a ton of other meds obviously.
Also a couple nights of really crazy dreams, perhaps from the anti fungal Vericonozal , we've heard or can cause hallucinating, but so far not that extreme for him.
So glad Tony is doing so well. I took vore every cycle and was warned
About hallucinations although rare. I did not have bad dreams with it.
Julie
Tacrolimus is a mean little drug. I'm still on it for GVHD 15 months out. My feet are the worst with the heat sensitivity. Bath water that my wrist says is fine feels like boiling water when I stick my feet in it. They do adjust after a few moments it feels like forever. It does lessen when the dose is lower. The month I was off the tacrolimus it went away.
For me, It causes some very strange foot cramps. Have to keep up with the Mg levels as tacrolimus chews it up quickly. Adding B complex and B12 has helped with some of the cramping. It isn't normal muscle cramp. It is more ligaments or something. It is strange. The blood vessels swell and pop up too when the cramps happen. It is worse right after dose changes. The other drug options I have, also have unpleasant side effects. My doc swears he is going to get me off of it.
I remember that Sal had a few crazy dreams around the same timeframe of his transplant but they stopped after a short while, not sure what caused them. I hope this side effect goes away soon for Tony. Sal (day +75) is still taking both Voriconazole (Vfend) and Tacrolimus (Prograf) and hasn't had any issues with them, thankfully. (His Tacrolimus dose is currently .5 mg in the morning and 1 mg in the evening.).
I love it that Tony is eating homemade Italian food from your mom!
xoxo
Monique
Dave j
Newest side affect- mucositis :( his throat is pretty sore, very painful to swallow, but they make something here called "magic mouthwash" which allows him to eat and drink and swallow without the horrible pain. he likes another excuse to eat ice cream, a silver lining!
Also, Has had a bit of blood droplets after wiping after bowel movements but no visual exterior tears or sores - maybe it's just an internal one, down in "that area" not sure, but we're hoping for his counts to recover soon and take care of these issues asap.
Still walking 3 miles a day, every day, hoping we can keep that up, as well as the food and water intake as much as possible.
Tell tony to keep up the good work, am praying for that mucositis to go away and counts to rise.
Dave J
Glad things are progressing as well as they are. I think about you too as we face this right behind you. Right now, my sis is donating the magic cells. I pray all continues to improve so life can return to normal and Tony gets to enjoy all the joys of his daughter's growing up.
Thanks for sharing,
Twilight
Blessings.
Julie
As my mentor, Dave Chung, a 15 year survivor always told me, "Don't sweat the small things." It sounds as if Tony is doing very well and the exercise can only help him.
The sensory issues will go away with time as will the dreams. I think I had strange dreams when I was on antifungals. The whole thing is one big strange (read BAD) dream, so how is there anything left to be strange?
Give my love to Izzy.
Cliff
So glad to hear from you, I actually just sent you a message earlier today. We are learning to not sweat the small stuff and accept what is par for the course in the treatment. The temperture sensitivity has subsided as well as the dreams, unfortunately the nasty mucousitis is holding steady and it's extremely painful to swallow. It's Day +8 and his WBC rose from
The mucositis was very annoying. In fact, that was the one and only time in the hospital that I had to give myself morphine in order to eat. I wish I had some now for this shingles pain. OUCH!!!!
There are many reasons that Tony will do well. He is strong and athletic and in great shape. The other reasons will all sound the same: he has you, he has you, he has you, he has you, etc. Love does amazing things for recovery.
Be well and just make sure Tony eats well and keeps doing the exercise.
XO Cliff
The mucositis is still here, but better today, hasnt needed morphine thankfully. Tonys tongue is still swollen, perhaps all the different mouthwashes and lidacaine rinses. Earrings still a challenge but he finds the strength to choke food down, each painful swallow he says "this is for Izzy"
His nurse said she anticipates the Dr telling us we will he going home in a couple days!
Xx
Lea