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, I wanted to provide an update for Sal. Today is Day 100 since his transplant on April 29 and he is doing great! No GVHD, no complications at all. His PICC was removed a couple of weeks ago and all his hair is growing back. His tacrolimus dosage will be reduced over the next three months or so.
His blood counts last week :
WBC 4.8
RBC 3.3
Hgb 11.3
Platelets 117
Because he had a matched sibling donor, I am sometimes concerned about there being no GVHD, since that also means no GVL. However, his conditioning was myeloablative to the hilt: 5 days of TBI three times per day followed by VP-16 (etoposide). That MUST have gotten all of the leukemia stem cells, right?
He still needs to get his energy back, and exercise and more time should help with that. He has some nausea almost daily, but Zofran helps with that.
In Sal's experience, he feels that BMT/SCT was easier than he expected. At the end of Sal's first induction, he was told he was intermediate risk and had to choose between chemo-only and BMT. (Sole abnormality of Trisomy 8) He was petrified of BMT, so he had four rounds of consolidation. But he relapsed quickly thereafter, so BMT was the only choice left. He has done very well so far.
Thank you all for your feedback and support for us and each other. This is an incredibly community and I care deeply about each of you.
Monique
His blood counts last week :
WBC 4.8
RBC 3.3
Hgb 11.3
Platelets 117
Because he had a matched sibling donor, I am sometimes concerned about there being no GVHD, since that also means no GVL. However, his conditioning was myeloablative to the hilt: 5 days of TBI three times per day followed by VP-16 (etoposide). That MUST have gotten all of the leukemia stem cells, right?
He still needs to get his energy back, and exercise and more time should help with that. He has some nausea almost daily, but Zofran helps with that.
In Sal's experience, he feels that BMT/SCT was easier than he expected. At the end of Sal's first induction, he was told he was intermediate risk and had to choose between chemo-only and BMT. (Sole abnormality of Trisomy 8) He was petrified of BMT, so he had four rounds of consolidation. But he relapsed quickly thereafter, so BMT was the only choice left. He has done very well so far.
Thank you all for your feedback and support for us and each other. This is an incredibly community and I care deeply about each of you.
Monique
I will keep Sal in my prayers.
Karen
Mum found the nausea was bad during the BMT, see if he can keep up the water and flush some of those chemicals through :)
xxx
Blessings,
Julie
so so so happy for your family! May each day get easier and Sal feel better and stronger, and hopefully the nausea will finally go away!
You've been on my mind and I'm so glad you posted, you're always in my prayers!
Xxoo
Lea and Tony
Lou - I have read much about RIC and how it may have better results than myeloablative conditioning. What kinds of GvHD symptoms have you had?
Twilight, I'm so glad your brother's counts are finally coming up!
Debbie, thank you for all of the support you continue to show all of us here!
Thank you Karen, Dave, Aussiemum and Julie, I will keep updating as time goes on.
Lea, Tony and Izzieyou are always in my prayers.
xoxo
Monique
My GvHD symptoms started well over 100 days after I was weaned off all medicines especially cyclosporine. Mostly skin and oral cavity problems like dry mouth, but no sores. Mild rash on the skin treated with OTC hydrocortisone creams and lotions, I was off all immune suppressants for a while and still am but the doctor saw some elevated liver enzymes recently so she's suspecting some of the other medicines but unless there is terrible signs of GvHD of the gut she;s just going to wait until these shingles clear up before messing with any drugs.