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.
I will start by saying I am in a state of shock and confusion and apologize for any disjointedness:
They want to delay the transplant 2 weeks to see if Keir's heart improves with the meds, but the cardiologist signed off - this is the transplant doctor's wish. He explained it by saying that the procedure itself could be hard on the heart, which I understand, but the cardiologist felt Keir would do well - which was what we were told would be the clearance last week. Then there was a contradiction in the two biopsy reports.
I am in such shock and confusion that I am not thinking straight. I will talk to his hematologist onc tomorrow - the one I spoke to this evening; she called me from home. She started off by saying, "Lori, I am NOT worried." She then went on to say she felt the one of the two reports (surgical) that had the line "evidence of residual leukemia" was an error, because it contradicted itself (earlier in the report it said no increase in blasts) and the flow cytometry which said "NO evidence of leukemia."
She sounded very determined that Keir was okay to have this transplant and would get a second opinion if the meds didn't increase the e/f in two weeks. She said the cardiologist felt it was safe to proceed. She was willing to wait two weeks but no more and clearly disagreed with the transplant doctor.
I simply do not know what to do or think.
They want to delay the transplant 2 weeks to see if Keir's heart improves with the meds, but the cardiologist signed off - this is the transplant doctor's wish. He explained it by saying that the procedure itself could be hard on the heart, which I understand, but the cardiologist felt Keir would do well - which was what we were told would be the clearance last week. Then there was a contradiction in the two biopsy reports.
I am in such shock and confusion that I am not thinking straight. I will talk to his hematologist onc tomorrow - the one I spoke to this evening; she called me from home. She started off by saying, "Lori, I am NOT worried." She then went on to say she felt the one of the two reports (surgical) that had the line "evidence of residual leukemia" was an error, because it contradicted itself (earlier in the report it said no increase in blasts) and the flow cytometry which said "NO evidence of leukemia."
She sounded very determined that Keir was okay to have this transplant and would get a second opinion if the meds didn't increase the e/f in two weeks. She said the cardiologist felt it was safe to proceed. She was willing to wait two weeks but no more and clearly disagreed with the transplant doctor.
I simply do not know what to do or think.
We leave for the Loyola consult in a half hour. I am beginning to lose hope. If chemo is risky and bone marrow is risky, but something has to be done, and done fast, we are still confused as to what and where and how to proceed. U of C team will meet Thursday to discuss case and make recommendations.
I cannot imagine what you and Keir are going through right now. Like Dave said you have some of the top minds working with you on finding a solution and I am sure they will. The waiting though is so difficult. Keeping you all in my prayers.
Take Care,
Suzanne