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.
Hi all,
I'm new here! I'm a 34 year old mom of 3 young boys all under age 5. My husband and I are doing our best to navigate this new world of cancer. I was dx on Sept 25 and thankfully my AML went into remission after one induction. I'm through two consolidation rounds with two more to go and some radiation as my AML was found in my CSF (cerebral spinal fluid). I'm FLT negative, NPM1 positive with normal chromosomes (no deletions or translocations or inversions). Drs. tell me that my the only strike I have against me is the involvement of my CSF but everything else is linked to a good prognosis. That being said, I'm scared to death that it will relapse. They did already run my DNA to find a match and I have some rare mutation that normally wouldn't make any difference to anyone unless they need a bone marrow transplant. So if I relapse, it would be super hard to find a donor. I'm struggling with worry about relapse. Its the hardest part of this for me. I can deal with the chemo and such but not knowing if I'll see my boys grow up just makes me so upset. I'm trying to stay positive and keep a positive outlook!
I'm new here! I'm a 34 year old mom of 3 young boys all under age 5. My husband and I are doing our best to navigate this new world of cancer. I was dx on Sept 25 and thankfully my AML went into remission after one induction. I'm through two consolidation rounds with two more to go and some radiation as my AML was found in my CSF (cerebral spinal fluid). I'm FLT negative, NPM1 positive with normal chromosomes (no deletions or translocations or inversions). Drs. tell me that my the only strike I have against me is the involvement of my CSF but everything else is linked to a good prognosis. That being said, I'm scared to death that it will relapse. They did already run my DNA to find a match and I have some rare mutation that normally wouldn't make any difference to anyone unless they need a bone marrow transplant. So if I relapse, it would be super hard to find a donor. I'm struggling with worry about relapse. Its the hardest part of this for me. I can deal with the chemo and such but not knowing if I'll see my boys grow up just makes me so upset. I'm trying to stay positive and keep a positive outlook!
Great outlook and advise as always, we too believe in just asking the doctors the questions or voicing any concerns, in fact they know we do that so much that they actually set Tony's biweekly appointment for as her last appointment of the day because she knows he's always going to take the longest! And there's no shame in that. ;)
We've Taken a page from your book we no longer read any test results or anything on "my chart" and we only ask our doctors our questions and we are completely off the Internet for anything medica
Stay well, please!
I'm sorry, I really didn't mean to imply that you should see a non-haematological specialist without your team's knowledge or to manage your care, but I can see how it may have been interpreted that way. I also confess I have a complete lack of knowledge of the American health care system and my case is very different to yours. I'm in rural Australia and there is no local haematologist - I suspect I'm seen 'more frequently' when he visits for this very reason! My haematologist works very closely with my primary care provider. There has been occasions when my specialist felt he didn't need to (or wasn't able to) see me and arranged for me to have bloods followed up by my primary care provider. Of course if there had been any concerns my haematologist also received the results and would have been in touch! I was more thinking of this situation when I suggested having monthly bloods with your family doctor if concerned.
You do need to feel that you trust and have confidence in the team looking after you, and while you trust your doctor, you should always feel comfortable asking questions and clarifying their reasons for doing things. Every AML case is very different, which reflects the range of various experiences on this forum. Naturally no advice given here should be a substitute for the advice given by the team that is treating you and knows your individual case - however it does bring up possibilities and points for discussion with your own doctor.