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 Everyone,
After lurking on the site for a few weeks I decided it was time to join what appears to be a compassionate and caring group with whom I can share my AML journey. I am a 49 yo mother to a 12 yo daughter. I was diagnosed mid Sept 13 after a few weeks of feeling run down. I was finally pushed to go to the doctor after swollen glands and swollen and bleeding gums. Got sent for blood test that day and admitted to hospital a few hours later with WBC of 157000. Haem/onc was pretty sure I would show FLT-3 mutation that she wanted to delay induction to enable participation in a clinical trial. Was started on Hydrea which amazingly brought my WBC down to just over 4000 within 3 days. Results came back negative for FLT-3 but they did see ONE cell under the microscope missing chromosome 7. This situation made me a bit 'unique' and this 'blip' caused my team to recommend BMT over chemo only to which I had responded very well with CR at first induction with little side effects, and similarly with the following 2 consolidation treatments. Another 'unique' situation for me is that there were no donors to match me on the registry - I am bi-racial. I have two siblings - one was not a match and the other one is a full match as she is my identical twin. Normally in a transplant situation, this would be absolutely great but with BMT apparently there is no GVL so the transplant would in fact be superior to an auto relying on the high dose of chemo to be the cure and my twin's stem cells to let me live. There will be no GVHD either which is why my transplant team want to go this route instead of using cord blood - they would prefer to save that option in case it's required down the track. Heading to Royal Melbourne Hospital for admission 3rd Feb for insertion of my second Hickman and bone density scan. Protocol is no radiation but full myeoblative conditioning. My twin will fly up at the end of the week to commence stem cell growth and harvesting. Luckily I have been too busy getting my work sorted and getting my daughter ready for her first year at High School which she will start after spending the first week with her father and I in Melbourne which is the trade off we gave for choosing not to enrol her at school in another state for the 3 months I will be away. Instead we will fly her up as often as we can on weekends and we are lucky to have free accommodation through the Bone Marrow Donor Institue for the duration of my treatment. I have been blessed with minimal side effects from chemo and pray that the same will hold true this time around. I feel well, trying to remain positive and will try and hold my tears in check when seeing my daughter off at the airport :(
After lurking on the site for a few weeks I decided it was time to join what appears to be a compassionate and caring group with whom I can share my AML journey. I am a 49 yo mother to a 12 yo daughter. I was diagnosed mid Sept 13 after a few weeks of feeling run down. I was finally pushed to go to the doctor after swollen glands and swollen and bleeding gums. Got sent for blood test that day and admitted to hospital a few hours later with WBC of 157000. Haem/onc was pretty sure I would show FLT-3 mutation that she wanted to delay induction to enable participation in a clinical trial. Was started on Hydrea which amazingly brought my WBC down to just over 4000 within 3 days. Results came back negative for FLT-3 but they did see ONE cell under the microscope missing chromosome 7. This situation made me a bit 'unique' and this 'blip' caused my team to recommend BMT over chemo only to which I had responded very well with CR at first induction with little side effects, and similarly with the following 2 consolidation treatments. Another 'unique' situation for me is that there were no donors to match me on the registry - I am bi-racial. I have two siblings - one was not a match and the other one is a full match as she is my identical twin. Normally in a transplant situation, this would be absolutely great but with BMT apparently there is no GVL so the transplant would in fact be superior to an auto relying on the high dose of chemo to be the cure and my twin's stem cells to let me live. There will be no GVHD either which is why my transplant team want to go this route instead of using cord blood - they would prefer to save that option in case it's required down the track. Heading to Royal Melbourne Hospital for admission 3rd Feb for insertion of my second Hickman and bone density scan. Protocol is no radiation but full myeoblative conditioning. My twin will fly up at the end of the week to commence stem cell growth and harvesting. Luckily I have been too busy getting my work sorted and getting my daughter ready for her first year at High School which she will start after spending the first week with her father and I in Melbourne which is the trade off we gave for choosing not to enrol her at school in another state for the 3 months I will be away. Instead we will fly her up as often as we can on weekends and we are lucky to have free accommodation through the Bone Marrow Donor Institue for the duration of my treatment. I have been blessed with minimal side effects from chemo and pray that the same will hold true this time around. I feel well, trying to remain positive and will try and hold my tears in check when seeing my daughter off at the airport :(
Wow! Thanks for that story. It is so important to know that people can beat this. But it is damn scary when you go from knowing nothing to having this world thrown in your face -- or in my case, the gut!
Blessings
Br
I thought I would give a little update. I have been quiet on this forum but I have been following everyone on a regular basis. Whilst I've been rocked by some of the sadness that has occurred I am also uplifted by the success stories also. I am 5 months post transplant doing well. I have clinic visits every two months and blood draws monthly. They are still moments of stress for me but that stress is definitely beginning to lessen the further out from diagnosis I go. I have felt so well that my doctor allowed us to have a family holiday with her blessing. We are currently holidaying on the Gold Coast (for you Aussies you will appreciate us Tasmanians seeking out the warmth :). Have been swimming with my daughter, watching her surf and going for long walks along the beach - I am truly blessed.
Dave, could you please pass this update on to Lori for me. I read your update on Keir and I fully understand her reasons for backing away but Keir has been my transplant 'twin' having pretty much identical transplant dates that I wanted Lori to know that things can and will continue to go well for her precious son.
It really helps us new comers to read the great news shared on this forum especially after reading the news that someone has relapsed or passed away, so thank you for helping to restore hope and faith.
Karen
My husband had his transplant 71 days ago and is also doing well. He cannot wait to have his PICC line removed and be able to swim again, so he will be very envious of your post! He loves the beach. He doesn't have long to wait, though.
I'm very happy for you, Tas!!
xoxo
Monique
Have a great holiday, enjoy yourself and so happy you are feeling well and out and about
xx
Dave J
Xx
Lea