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.
Does anyone know anything about DLI and outcomes? Let me do a short summary: my 40 yo brother was diagnosed with aml 12/13. I'm a perfect match and the only sibling so he went for bmt 4/14. Relapsed 7/13 very unexpectedly. He has had grade 3 gvhd and now is controlled. He has gone through two cycles of vidaza and sorafenib. His oncologist was surprised about the positive results from the vidaza/sorafenib treatment. He will start his third cycle next week and his team wants him to do a DLI on 9/29. UCLA hasn't started their asp 2215 clinical trial and the team wasn't sure if getting the DLI would preclude him from the trial. I'm worried about the outcome from the DLI since he had a tough time with gvhd I was hoping that he will be a good candidate for the asp 2215 trial but I understand its still a trial. If anyone has had experience with DLI and results I would greatly appreciate it!
Thank you everyone for your concerns and I am so so grateful for this forum.
Thank you everyone for your concerns and I am so so grateful for this forum.
I am so sorry to hear about your husband. May I ask where your husband is? I feel that asp 2215 is about our only hope because there was been such good results with the drug. It seems to work well with FLT 3 ITD and TKD patients.
Just to let you know, soon after my brother's relapse in July he ended up in the hospital with almost uncontrollable fever. He was absolutely miserable for three weeks and we thought he wasn't going to make it because the team could not give him anything for the fever except for tylenol. It was very difficult seeing him shivering and miserable with 104 fevers which would come and go all throughout the day. Then he was discharged for two days and had to go back for the uncontrollable nausea, vomiting and diarrhea from GVHD. Honestly his oncologist thinks its a miracle that he's even alive today since with there is extremely little research on AML with the TKD mutation. In fact, his oncologist was frank and said that he's making it up as we go along. His oncologist will continue him on the sorafenib post DLI as that's all we know for now. I will be sure to keep you up to date as each day is very different. Just three weeks ago, there was such extreme hand pain that he wanted to cut off his hands. I'm just not sure what to expect each day. We have been blessed that after the hand pain is controlled, there hasn't been any bad surprises.