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.
Hello all, I've been lurking and reading for a while, now looking for advice and/or the benefit of anyone else's experience. My sister was diagnosed in early June with AML. She is currently inpatient at Stanford Cancer Center. Her cytogenetics and just about everything else put her in the least favorable risk group. She is 64 (but in extremely good health prior to this), her wbc count was over 500,000 at diagnosis, and she has chromosome 5/7 deletion. Following her first biopsy she was advised that she would need a BMT regardless of whether induction was successful, and they went ahead with HLA typing for my other sister and I well ahead of the normal time frame. She has had 2 rounds of induction which have brought her blasts from 85% to 15%, but still had peripheral blasts after round 2. She started induction round 3 last night, which has been described to me as a new drug that "stimulates" the leukemia cells followed by a higher dose of the previous chemo. She tolerated the first 2 rounds fairly well, fatigue and mouth sores being the worst effects. Now the good news, we found out yesterday that I am a 10/10 perfect match. I am pushing them to begin the BMT process right away, since as I understand it she will probably need to go that route regardless of remission success. The problem I am running into is that she has not yet met with the BMT team, and she's not even "on their service" yet. As I understand it if remission is achieved it may be short lived, and I wouldn't want to miss a window of opportunity for the BMT due to administrative procedure. I'm really pushing them. I know there's a lot of procedure involved, but again I don't want to miss a window based on "procedure". Any advice or personal experience is appreciated.
Debbie
Personally I would start asking her med team when she will meet with the SCT doctors and keep asking until the meeting is set.
Can you tell us your sister's first name so we can add her to our prayers?
We have a couple of members at Stanford, so maybe you will meet up with them.
Hugs and prayers.
Karen
I am very sorry to hear of your sister's diagnosis. Different hospitals have different protocols. Where my father was treated, they would not start the BMT process until remission was reached. This may or may not be the reason for the delay with your sister. Don't be afraid to ask her medical team questions - you deserve to be as well-informed as possible. Best wishes.
My brother had a BMT last summer from his 60 year old sister. He was 55 and both his sisters, me included, were 10/10. We both were excited to be matches.
That said, about 100 days post-BMT, he relapsed. He just had a second BMT from an anonymous 22 year old international donor.
This time, things seem to be progressing better. Additionally, he is FLT3 positive and has been involved in a trial for that factor.
The docs don't seem to clearly know if age trumps family - all I would say is, depending on your age: ASK. With hindsight, I wish we had gone with a younger donor last year but were not given that option.
However, others on this site have had successful sibling donors --- all, I am saying is if you are 60+, this is a question to explore. It seems they drop volunteers from the donor bank at age 60.
Twilight
Will pray for remission to bridge to a successful transplant for your sister
Lea
Sorry about your sister, I'll be praying for remission, and the cure with her transplant.
DaveJ
Thank you all for your thoughts and prayers.
DaveJ
DaveJ
If able, I would think a donor should have his or her cells harvested at the same hospital as the patient. But I don't think they typically do it for unrelated donors for anonymity. It doesn't seem like they would want the two meeting one another - they don't even let you exchange emails until a year or two has passed as far as I know.
I felt the same dragging of the feet attitude prior to my transplant. I was told that going into transplant in a solid remission was a benefit and I didn't want to lose that benefit so I pushed for a timetable. And they responded. Hell, they get paid hundreds of thousands of dollars for this procedure, when we say "jump" they should say "how high?" Anyway, if you feel at any time that your sister isn't getting the attention she deserves, make a stink and you'll be surprised how they jump to attention.
Finally, I had reduced intensity conditioning. I was 52 at the time but my hospital is big on it for virtually all patients except the most young and fit. I think it's still somewhat experimental but it's worked for me and I was high risk also, 2 inductions required and FLT3 positive. I'm in my 32nd month post transplant. And there is a gentleman on the LLS board, also high risk FLT3 positive, who is over 3 years post transplant who got a reduced intensity transplant at Stanford. So trust the doctors' judgement. Good luck.
Lou