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 sister is 51 years old and was diagnosed in January with AML. She has an inversion 16 type which they tell her is a good thing. She qualified for a clinical trial in which they say they are having great success Kind of the best of the worst type. It was quite a shock to us since we had just lost my father a year ago to brain cancer. She has been through 4 weeks of isolation with chemo induction at MD Anderson in Houston, Tx and has been through two more outpatient rounds of chemo. However, she has now been almost a month without chemo due to low blood counts that have not rebounded. She has been through numerous platelet and blood transfusions in the past two weeks.
I would like to know if this is a normal thing? Her doctor says this is a setback but that it is "manageable." Just trying not to worry so it would help to hear some experiences of others and if they went through the same thing. I am worried that the longer she goes without continuing her chemo, the more likely the leukemia will start to produce blasts again.
I would like to know if this is a normal thing? Her doctor says this is a setback but that it is "manageable." Just trying not to worry so it would help to hear some experiences of others and if they went through the same thing. I am worried that the longer she goes without continuing her chemo, the more likely the leukemia will start to produce blasts again.
I will have to ask her if she knows the names of them. Due to the clinical trial, she gets 2 types that are the usual for leukemia treatment and then a third from the clinical trial. We live about 1.5 hours from MD Anderson and she has to travel 3 days in a row for the chemo. Due to the trial, she has to have the chemo at MD Anderson and cannot do it locally. She goes to a hematologist closer to home for the lab work and they send the results to her doctors at MD. If it weren't for the clinical trial, she could have also had her chemo closer to home and just travel for doctor's appointments back to MD but we were glad that we are as close as we are to MD to make it available to her for treatment.
I will ask her tonight and, if she knows, post the names of them.
I'm curious, with such favorable cytogenics, inversion 16, why did your sister feel a clinical trial was the best route for her? From what I know , inversion 16 has a very high cure rate with standard chemotherapy protocols.
Lou
My sister thinks the names of her chemo are Fludarabine ARA-C, G-CSF, and Idarubicin for inversion 16.
Lou,
I'm not exactly sure why she chose the clinical trial other than she would be getting the normal chemo anyway plus extra so that would be that much more to hopefully take care of the leukemia for good.
My attitude is let's throw the kitchen sink at this heinous disease. I would and will do anything to live! I saw from your other post that they are lowering her dose due to her count recovery. Please do not be concerned about this as it also happen. My med team said the slow recovery shows yours body's sensitively to the chemo-that is good. More of a worry are those whose counts do not go down. I had lowered dose three of my four sessions and I am in complete remission-praise God! She is going to do amazing and beat this!
Julie
My sister is a very social person and always had a houseful of people over every weekend. The isolation required for this disease is a huge point of depression for her.
I'm like your sister, a flaming extrovert, so I was worried about the isolation. My med team prescribed celexa an anti depressant and klonapin for anxiety early after dx. I am still on a very low dose of these meds and believe they have certainly me through the aml rollercoaster.
Julie
Hope this helps
She has been fortunate with no infections. She does have a 9-month old grandson that stays at her house quite a bit and it is hard for her to keep him at arms length. He does not go to daycare so the docs said if she was careful, she could still be around him. He's a cutie and does help raise her spirits.
Praying for platelets-your sisters and mine :-)
Julie
We are really worried right now because MD Anderson has cancelled her appt with the doctor again and instead now wants another bone marrow aspiration to check for relapse. She says she is now having night sweats again and she can tell she will need platelets again Monday from the little red blood blisters she is getting.
I'm praying for you and all the others on here. Enjoy your time out with your girls!
Julie