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.
My husband was diagnosed with AML 6 weeks ago. He went to the ER because he had been weak several days. He thought he might have a stent clogged. After taking blood the ER doctor came in and told him he most likely had AML. We were shocked to death. He was admitted that night.
In a couple of days a bone marrow biopsy was done. The next day the oncologist confirmed AML. He told him he would have the 7 day 24 hour chemo. He really did not have a real hard time with the chemo. His numbers came back up better than the doctor thought. He said his body would not be able to withstand the consolidation chemo. He is 73. He said after rehab he will do another chemo (don't know the name yet) on an outpatient basis. It was not a cure but only to prolong life. This statement was very discouraging to me .It really left no hope.
He is in rehab now and has done great. He only has another week before we go home. He also goes back to the doctor next week.
I just cannot believe there is no better hope than this. Has anyone experienced anything like this?
In a couple of days a bone marrow biopsy was done. The next day the oncologist confirmed AML. He told him he would have the 7 day 24 hour chemo. He really did not have a real hard time with the chemo. His numbers came back up better than the doctor thought. He said his body would not be able to withstand the consolidation chemo. He is 73. He said after rehab he will do another chemo (don't know the name yet) on an outpatient basis. It was not a cure but only to prolong life. This statement was very discouraging to me .It really left no hope.
He is in rehab now and has done great. He only has another week before we go home. He also goes back to the doctor next week.
I just cannot believe there is no better hope than this. Has anyone experienced anything like this?
I would get a second opinion, this doctor sounds a bit inflexible. There are levels of consolidation chemo, demethylyzing agents and other options even if it's true that the standard protocol is not possible due to age or comorbidities. You don't mention your center and your profile doesn't have your location. Let us know where you are and I'm sure we'll have someone here to refer you to a top notch center. Keep us informed.
Lou
Two or three here only did one consolidation session and have been in remission longer than me. I am assuming your human is in remission?
Also, I know of at least three who have had sct in their 70s. Please do not lose hope, there is hope. I'm praying
Julie
Sorry for the typo
I brought a thread to the top about alternate treatments for aml to provide more hope. I pray this helps. You and your hubby are in my prayers
Julie
I agree with the others. You need to get another opinion about your husband. If you can, I would go to MD Anderson in Texas (that is probably closer than coming north). I don't know his general health or his cytogenetics, but there has to be more to offer.
Cliff
My Mother was 81 (2011) when she was diagnosed with AML. She, too, picked up on the "gloom and doom" when she first "received the news" as she called it. Too old, hard time with chemo, and so on. She asked her first doctor for a referral; and reluctantly, got one to a doctor in Seattle. She came out of Seattle with a "can do" attitude and decided to receive treatment.
She did have treatment, and had three good years, pretty much on her terms. It gave her life purpose to know, she said, that age by itself doesn't rule out treatment, if that is what a patient chooses.
Lou and Julie are spot on. A second opinion, any other conditions your husband may have, supportive friends and family, and a positive, hopeful spirit all factor in.
Lastly, I read Dave's (AML survivor and support group encourager) blog and that proved so helpful. In the beginning, it kept me, as a caregiver, from feeling like I was being knocked around in the sea without a boat.
I feel your caring spirit and I will keep you and your husband in my prayers.
Peggy
Vanderbilt is a top notch facility and one of the top transplant hospitals in the country. Speaking from experience, I would seek their opinion.
My brother had a BMT and relapsed within two months which was extremely unexpected due to his age (40 now) and cytogenics. When he relapsed this past July, his oncologist didn't really give us much hope either. I had pressed for him to be in a clinical trial but was too weak to sick from GVHD to fly up to UCSF at the time. His oncologist put him on sorafenib and then we finally got onto the ASP 2215 this past december when UCLA finally opened the study. I would look at any clinical trials in the area and I think Cliff's idea of MD Anderson is a really good choice if you can get over there.
There is a different phase of Gilteritinib (asp 2215) which they are trying on newly diagnosed AML patients which is worth some research.
https://clinicaltrials.gov/ct2/show/NCT02236013?term=asp+2215&rank=3
My brother was diagnosed in Dec 2013 and he's still hanging on day to day. We have been extremely blessed and it's a miracle that he's home now with his two little ones (3&4) considering that in January 2014 his oncologist didn't think he would survive his hospitalization. I really think that Gilteritinib is what's keeping him home.
I'll be praying for you and your husband. Everyone on this site has been extremely helpful and supportive. I know that their support has helped me immensely.
Lou