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
Debbie
More prayers coming your way. May God carry all of you in His Hands through this difficult time.
We're praying for Christina, as well as you and the children. We don't have any experience with Clofarabine, but I hope someone here does and can share their experiences.
Hugs,
Monique and Sal
DaveJ
I too had one round of the Clofarabine prior to going on the ASP2215 trial. I handled it well, got one fever for an unknown reason and lots of nausea. Unfortunately, my leukemia came back after the Clofarabine and it came back hard ! But the 2215 has put me in remission now after four weeks. I was chosen ( by computer) to take the highest dose 300 mg.
Christina is still hospitalized and is improving slowly. She still has considerable confusion, but they removed the catheter yesterday so that is one step closer to getting out of the hospital! I think that we are going to do a combination chemo, sorafenib and azacitidine. She can do this at our hospital closer to home and come home each day. She told me on Monday that all she wants to do is go home. Since she was diagnosed Nov. 29th of 2013 she has been in the hospital about 101/2 months. This chemo regimen will allow her to be at home and also give her as good a chance as the clorfarabine. She did test positive for VRE so I am not sure if that will throw a wrench into things. The Doc did say there was zero percent chance that either of the chemo regimens will produce a sustained remission, but it may be a bridge to a 2nd transplant. Thanks again for all of the support!
Tom
Hugs and prayers.
Karen
Shane
Praying for Christina. From what I know about clofarabine, its efficacy is not great and I am very glad that she is getting a combination chemo regimen instead. As Lora said, let this be a strong bridge as Christina moves forward.
Cliff
Christina met with Dr. Hashmi, her hematologist today to discuss options for her going forward. He told us that he would not recommend any aggressive therapy and that a 2nd transplant was not feasible. Originally, after the coma, he thought that Christina would be able to to a combo chemo involving an oral chemo and an injection she could do at home. He discussed these options with the Heme team and they believe that would be too toxic for her. Today he said there were basically 2 options, 1 do nothing and go into the hospice program or 2 do a light oral chemo that could potentially extend her life for awhile, although he would not speculate on how much more time this may give to her. He also stated that if this chemo produced any negative side effects they would stop it and she would go into hospice. Thanks to everyone for your support, prayers, and positive thoughts!
Tom
So sorry. I will keep you and your wife in my prayers. May God hold you all in His Hands.
Twilight
I am sorry to hear this it seems to me that it should be up to Christine to decide whether or not she wants to try the aggressive route or not since it is the only option that has a chance at saving her life.
I will continue to pray for Christine.
Hugs and prayers.
Karen