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.
Hi everyone
Today is day 100 post transplant for Tony. It's literally been a blur, July 10th, transplant day seems like forever ago! We are so grateful for all of the prayers and advise we've received. We have had such a long road (relapsing at 13 months w favorable inversion 16) but know that this is still just the beginning.
He has done well so far, but he definitely has ups and downs, good and bad days. He was tapered off immunosuppressive drugs early at day 52, and had his port removed then too, as had no need for it since discharge.
He really felt well early on, but as times gone by he's actually started to feel a little more crummy. It's so hard to see him this way as I try to stay positive but I get so worried too.
They (Heme/Onc) think the rash was probably gvhd but since pathology didn't confirm- guess we will never know. It's totally under control and very mild but nonetheless still potentially gvh
His latest bone marrow results are good, no leukemia cells detected, most importantly, & still full donor. U of C doesn't say "100% donor", which bothers me bc I see many people post that they are "100%" but guidelines state anything over 95% is "full donor" and they go off of bone marrow chimerism tests, not peripheral blood. Any feedback or input on this appreciated.
The haven't decided if tony will qualify now for the pDLI bc of the rash, they think if he already has gvhd, giving a DLI will make it worse. In my opinion, I want him to get it, bc I NEVER want to go down this path again.
We are down to bi-monthly visits now (which is good but stresses me out bc I have a love/hate relationship w counts) and not knowing is stressful!(esp when he is not feeling great) his latest counts are
WBC 5.3
Heme 13.5
Plates 131
ANC 3800
Oh and his Lymphocytes are getting up there finally (16%), the bottom of normal range
It's been hard to keep up w a 2.5 year old thru all this and hide our pain or sorrow or exhaustion from her. But she is everything to us, and Tonys reason to fight, to live. We were planning on having another baby this fall but those plans were shot on April 10th when we got the call from his old doctor. We want nothing more than to put this behind us and start living our lives again, and move on, go on a date, plan a trip or figure a way to maybe have a baby (I'm getting older than we wanted and I have a uterus issue, that we found when I was preggers w izzy)
Keeping izzy isolated from other kids has been hard on us bc all she wants is friends - it breaks our hearts, but there's so much viral crap out there- we can't risk it. Parents take their sick kids out and about - they don't realize the ramifications it has for people like us.
So there it all is, the good & the bad, happy and the sad, but most of all, the good. I thank God every day for healing tony again and ask him to hear my prayers to continue to keep his healing hands upon him, so izzy can have her daddy.
Live u guys
Lea
Today is day 100 post transplant for Tony. It's literally been a blur, July 10th, transplant day seems like forever ago! We are so grateful for all of the prayers and advise we've received. We have had such a long road (relapsing at 13 months w favorable inversion 16) but know that this is still just the beginning.
He has done well so far, but he definitely has ups and downs, good and bad days. He was tapered off immunosuppressive drugs early at day 52, and had his port removed then too, as had no need for it since discharge.
He really felt well early on, but as times gone by he's actually started to feel a little more crummy. It's so hard to see him this way as I try to stay positive but I get so worried too.
They (Heme/Onc) think the rash was probably gvhd but since pathology didn't confirm- guess we will never know. It's totally under control and very mild but nonetheless still potentially gvh
His latest bone marrow results are good, no leukemia cells detected, most importantly, & still full donor. U of C doesn't say "100% donor", which bothers me bc I see many people post that they are "100%" but guidelines state anything over 95% is "full donor" and they go off of bone marrow chimerism tests, not peripheral blood. Any feedback or input on this appreciated.
The haven't decided if tony will qualify now for the pDLI bc of the rash, they think if he already has gvhd, giving a DLI will make it worse. In my opinion, I want him to get it, bc I NEVER want to go down this path again.
We are down to bi-monthly visits now (which is good but stresses me out bc I have a love/hate relationship w counts) and not knowing is stressful!(esp when he is not feeling great) his latest counts are
WBC 5.3
Heme 13.5
Plates 131
ANC 3800
Oh and his Lymphocytes are getting up there finally (16%), the bottom of normal range
It's been hard to keep up w a 2.5 year old thru all this and hide our pain or sorrow or exhaustion from her. But she is everything to us, and Tonys reason to fight, to live. We were planning on having another baby this fall but those plans were shot on April 10th when we got the call from his old doctor. We want nothing more than to put this behind us and start living our lives again, and move on, go on a date, plan a trip or figure a way to maybe have a baby (I'm getting older than we wanted and I have a uterus issue, that we found when I was preggers w izzy)
Keeping izzy isolated from other kids has been hard on us bc all she wants is friends - it breaks our hearts, but there's so much viral crap out there- we can't risk it. Parents take their sick kids out and about - they don't realize the ramifications it has for people like us.
So there it all is, the good & the bad, happy and the sad, but most of all, the good. I thank God every day for healing tony again and ask him to hear my prayers to continue to keep his healing hands upon him, so izzy can have her daddy.
Live u guys
Lea
So sorry to hear about Tonys infection but happy to hear his immune system worked do well and fought it. Praying for great lab results.
Ksren
Labs today were good, and ALT back in normal range, so pDLI will be next Monday.
They also took him off prophylaxis voriconozole (Vfend) so I'm really hoping he will feel better in general. It's an icky drug, but a necessary evil. He's been on a very high dose of 700mg daily since July (2x350/day) bc he metabolizes the drug quickly
He's now only on Valycyclovir and Bactrim prophylaxis...yay, praying that is all he will need till they taper him off those down the road.
Oh his CK muscle enzyme tests were normal so the muscle cramps are not gvh but most likely just reconditioning and muscle loss
Tony is in my prayers.
Karen
Julie