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.
We're At hospital now for tonys second preemptive DLI dose today.
He's been battling a lil mild rash and itchy dry skin since last dose, nothing major so we proceeded with the second infusion today.
His labs were ok, whites 4.6 (lately been 4.4-4.85, got to 6.2 once a few weeks ago) platelets 142, which bummed us bc this is the first drop below "normal" of 150 since mid-October (he's ususlly between 152-170)
But what really kind of worried us today was his heme. It's been stable 13.5-14 since Oct, and was 12.6 today. This is his first drop out of "normal range in months" the Reds have always been so stable. Of course his doctor wasn't too concerned (they never are really) but we discussed w her that we were. She's running a few other tests (retic count) as precautionary but reassured us not to worry. She knows us well and knows we hang on every lab- almost living week to week you could say. She actually hugged me bc she could see my distress
We have our normal appt w her on Christmas Eve, and I just pray to almighty God his reds, and platelets are behaving and back up by Wednesday so we can enjoy this Christmas together, w a lil less worry weighing on us!
Just venting I guess, I'm scared too, can't help it.
I'm Looking for those blinders to put on they dear friend cliff always talks about!!!!
Xo
Lea
We're At hospital now for tonys second preemptive DLI dose today.
He's been battling a lil mild rash and itchy dry skin since last dose, nothing major so we proceeded with the second infusion today.
His labs were ok, whites 4.6 (lately been 4.4-4.85, got to 6.2 once a few weeks ago) platelets 142, which bummed us bc this is the first drop below "normal" of 150 since mid-October (he's ususlly between 152-170)
But what really kind of worried us today was his heme. It's been stable 13.5-14 since Oct, and was 12.6 today. This is his first drop out of "normal range in months" the Reds have always been so stable. Of course his doctor wasn't too concerned (they never are really) but we discussed w her that we were. She's running a few other tests (retic count) as precautionary but reassured us not to worry. She knows us well and knows we hang on every lab- almost living week to week you could say. She actually hugged me bc she could see my distress
We have our normal appt w her on Christmas Eve, and I just pray to almighty God his reds, and platelets are behaving and back up by Wednesday so we can enjoy this Christmas together, w a lil less worry weighing on us!
Just venting I guess, I'm scared too, can't help it.
I'm Looking for those blinders to put on they dear friend cliff always talks about!!!!
Xo
Lea
DaveJ
I know I'm one of the worst offenders, but try not to let those numbers worry you. They are not a significant drop and it is only a 'snapshot' of one day. If the doctors aren't worried, I learned not to worry also. It wasn't always easy, believe me, but I worked out that if they were worried, they would move quickly to act on it. Give Izzy a huge hug for me. My 'little' one is 13 and just as excited about the summer holidays to go surfing, waterskiing etc and I'm going to be right alongside her enjoying every moment :)
You can't be more of a worrier than I. Thus the shingles. Thoughts, hugs, and prayers as you, Tony, Izzy and your families move forward. May the peace of the infant Jesus be with you all as you continue this journey.
Susan
Forget the numbers -- you cannot change them anyway -- what I would be worrying about are ways to make Tony's holidays the best that they can possibly be -- the longer that he (and YOU) forget about his problems and get on with having fun and enjoying each other, the faster his recovery will come. So, that is something worth worrying about and acting upon. We are all praying for the guy who (correct me if I am wrong) is our youngest victim. He is our champion! -- dave
It sounds like Tony is doing well. I too always look at the numbers but have now reached a point where I don't think too much about the ups and downs until I see a trend over a few weeks and then I bring it to the Doc's attention for some explanation. My wife's Doc told us to not worry about the numbers, they have 5-6 Doc's looking at them every time she has labs and they will catch anything that comes along. He also said that some of the numbers will change with medication changes and side effects. I hope you and your family have a wonderful holiday season!
Tom
You, Tony and Izzy are forever in my family s prayers. Praying for improved numbers for Christmas! You both are such an inspiration to me and others on this board. God bless you for your live and friendship
Blessings
Julie
Love to you all and ill be taking your advise, extra hugs to Izzy, and focusing on making this the best darn Christmas I can for my husband and daughter
Xo
Lea
Merry Christmas! We are praying for Tony daily and hope that everything looks good at his next appointment! It seems like the numbers are pretty sensitive to everything after transplant, so I'm sure this is just a reaction to some minor thing. We wish your family the very best! I totally understand the PTSD feeling, and trust me, it is quite possible for a caregiver to end up with true PTSD. Don't forget to take care of you too! Sending prayers,
Jacki
Tony is at 180 days today, it's hard to believe! his 6 month post transplant BMB is tomorrow and I want to ask everyone to please say a prayer for a sparkling clean marrow, no chromosome abnormalities, 100% donor cells, and just all in all, please send us positive vibes
These days are usually long and stressful
Love,
Lea, Tony, and Izzy
Blessings
Julie
DaveJ
Debbie