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.
As many of you know my wife Christina relapsed recently and started a trial of asp2215. This past Sunday we went in for her now daily labs and her temp was 102. By 9pm she couldn't follow directions, walk, and was largely unresponsive. Monday morning she had 2 seizures and was admitted to the ICU. She is currently in a comatose state and on a ventilator. The docs initially believed it was an infection as her temp had gone up to 103.7 but all of the cultures so far have come back negative. They did an MRI today and think that it may be posterior reversible encephalopathy syndrome (PRES), but she has a highly distinct set of symptoms that make this diagnosis rather unique for her. Has anyone had experience with this syndrome? We would appreciate any positive thoughts and prayers as this is a very difficult situation for my wonderful wife.
Thanks,
Tom
Thanks,
Tom
I'm so sorry to hear about Christina's current state. My brother started asp2215 almost three weeks ago. This past Thursday he went in for labs and he's pretty sure they changed his dosage and probably increased to the highest dose which is 300mg He was randomized to 200mg but since last Friday he's been extremely extremely tired where he needs to lay down the majority of the day. He's also been feeling very cold. Thank God no temps so far but not nearly as energetic as two weeks ago at the commencement of the trial. My brother has had temps before and all of his cultures come back negative also. In fact in July he was hospitalized for two weeks with fevers that were as high as Christina and all he could take was Tylenol. It was very difficult watching as he went through those two weeks since he was constantly shaking from the fevers. The negative labs is a good thing as this should pass quickly.
I pray this is temporary for you and Christina. I pray that she will recover from the encephalopathy and be off the ventilator. Prayers for strength and peace both of you.
Prayers that they will get a handle on this quickly for Christina!
Debbie
I too am sorry to read that Christina is not doing well. I pray thst God lays his healing hands on her and restores her health.
Hugs and prayers
Karen
As always, your precious family is in my family's daily prayers-especially for Christine's healing.
Julie
I am so sorry to hear Christina has suffered another set back, I pray they can get the fever (and PRES) under control and continue with her treatment to get her back into remission. You have all been through so much, I'm praying for complete healing
Lea
Thanks for all of the prayers and support, they mean so much to us. Christina opened her eyes and moved her limbs today, nothing purposeful, or on command but definitely a step in the right direction! She is still is in a comatose state, but hopefully she will be able to move out of it in short order. Brtwilight-The ASP2215 is a flt3 inhibitor so technically not a classic chemo drug. Christina is a strong woman with zest for life so that is an important aspect in dealing with this disease. Thank you all for your support!
Tom
I've been thinking and praying for you and Christina. I'm so glad that she's headed in the right direction. Every little step is just so precious. Please keep us posted and prayers for continual strength and healing.
I am happy to hear of Christine's improvement. Hopefully she will continue to improve.
My thoughts and prayers are with you and Christine.
Hugs and prayers for both of you..
Karen
Julie