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
Who wanted to give an update on my husband Tony's situation we went in for another blood draw and possible bone marrow biopsy this morning.
a quick (not really) recap of the backstory is this, he was diagnosed with a 17th 2013 with aml. Had a very high white /blast count, fever, fatigue & a staff infection at diagnosis. Bmt came back aml w inversion 16.
He tolerated chemo phenomenally sailed through induction & the first two rounds of consolidation had an infection with cdiff in round three and actually septic blood bacteria in round four
He was incomplete molecular remission at the end of all treatments with zero blasts and no sign of any inversion 16 anymore.
Early March he came down with a pretty nasty cough so did our two-year-old daughter. they both work through it and it took about three weeks. we went in for our three-month blood work checkup and doctors appointment on 3/20 which showed that he was actually borderline neutropenic at the time & his white count (which was previously 4.9) was down to 2.9 and has anc (that was previously 2.57) was down to 1.5 and so the doctor said to keep an eye on it and continue with bloodwork the following week. And so we did but or five days later and his ANC and white to continue to drop ANC was now 560 his platelets and red stayed stable so would continue to monitor him w weekly blood draws
Going on a total of 21 days now of ANC below 1500 (16 days around 500) we went in this morning for blood work anticipating his WBC and his ANCs would be up because he's feeling phenomenal, exercising running playing. He has more energy than I do.
his counts had actually dropped from the week before and is back down to about 500 neutrophils Reds came down a little bit 4 to 3.63 and platelets dropped from 158 to 154. Totally shocked.
There are still no blast and his peripheral blood work but to finally figure out what's going on his doctor did a bone marrow test.
I know I've been told that cold viruses& flus can drop your white count and I'm trying to stay positive believe that's exactly what happened here have no idea why his white/ANC are not recovering or just going up a few hundred and then down a few hundred up a few hundred and down again.
I've had a few people reply to my previous post that they were familiar with this happening with whites I just have no idea how long this can go on for or if it's a precursor to a relapse god for bid, I don't even like to say that word because he looks phenomenal and healthy and is running and feels great. it's like the counts are telling us the exact opposite and it's so scare and unnerving
It seems like many have had issue w platelets not recovering, but not many w this same issue as us. I will take as many prayers and positive vibes as we can get waiting these long five days for the bone marrow results! anyone has any input or experience it be greatly appreciated
thank you all & god bless
Who wanted to give an update on my husband Tony's situation we went in for another blood draw and possible bone marrow biopsy this morning.
a quick (not really) recap of the backstory is this, he was diagnosed with a 17th 2013 with aml. Had a very high white /blast count, fever, fatigue & a staff infection at diagnosis. Bmt came back aml w inversion 16.
He tolerated chemo phenomenally sailed through induction & the first two rounds of consolidation had an infection with cdiff in round three and actually septic blood bacteria in round four
He was incomplete molecular remission at the end of all treatments with zero blasts and no sign of any inversion 16 anymore.
Early March he came down with a pretty nasty cough so did our two-year-old daughter. they both work through it and it took about three weeks. we went in for our three-month blood work checkup and doctors appointment on 3/20 which showed that he was actually borderline neutropenic at the time & his white count (which was previously 4.9) was down to 2.9 and has anc (that was previously 2.57) was down to 1.5 and so the doctor said to keep an eye on it and continue with bloodwork the following week. And so we did but or five days later and his ANC and white to continue to drop ANC was now 560 his platelets and red stayed stable so would continue to monitor him w weekly blood draws
Going on a total of 21 days now of ANC below 1500 (16 days around 500) we went in this morning for blood work anticipating his WBC and his ANCs would be up because he's feeling phenomenal, exercising running playing. He has more energy than I do.
his counts had actually dropped from the week before and is back down to about 500 neutrophils Reds came down a little bit 4 to 3.63 and platelets dropped from 158 to 154. Totally shocked.
There are still no blast and his peripheral blood work but to finally figure out what's going on his doctor did a bone marrow test.
I know I've been told that cold viruses& flus can drop your white count and I'm trying to stay positive believe that's exactly what happened here have no idea why his white/ANC are not recovering or just going up a few hundred and then down a few hundred up a few hundred and down again.
I've had a few people reply to my previous post that they were familiar with this happening with whites I just have no idea how long this can go on for or if it's a precursor to a relapse god for bid, I don't even like to say that word because he looks phenomenal and healthy and is running and feels great. it's like the counts are telling us the exact opposite and it's so scare and unnerving
It seems like many have had issue w platelets not recovering, but not many w this same issue as us. I will take as many prayers and positive vibes as we can get waiting these long five days for the bone marrow results! anyone has any input or experience it be greatly appreciated
thank you all & god bless
I am so sorry you are going through this. I pray that your med team can give you preliminary bmb results before five days. I was always given the preliminary no blast within 24 hours probably because they know how high maintenance I am. Thor husband and I put on the same path but for a month difference and this struggle feels very closeto home. I do know of several who had similar experiences with sanc like cliff, mondreamer and lilypad who hasn't posted in a while. She was chemo only and needed neupegan shot for almost a year after treatment. They waiting is torture but I am optimistic the outcome will be favorable.
Praying
Julie
I'm where you are... Not with blood counts but chronic gvhd. I have skin thickening which is effecting my joints and compressing everything inside. It's been going on a long long time. Last clinic visit I asked is it any better. My onc sighed and said this needs patience and lots of it, your body has been through the wars and everything recovers at its own speed. Like Dave said don't look for anything in the next few weeks and by then hopefully there will be an improvement. Mine on the other hand her exact words were" kiss goodbye to the next year" I'm going to be on 3 different immusuppressent drugs for at least that length of time and my beautiful normal counts I had for a full year are now long gone.
My prayers for you
Majella
I want you to know I'm praying for you and Tony, for God's peace that passes All understanding and for a clean biopsy.
Julie
When I have faced this type of anxiety my only relief comes from reading God's word especially Matthew six and fervent prayer.