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 :(
Stay strong, the other side of transplant coming soon.
Colleen
Sal is feeling a bit weak, but getting stronger every day. He has an appointment with his hematologist next week, and I'm sure we will be scheduled for a bone marrow biopsy soon.
Colleen, great news that your husband was discharged from the hospital! That seems amazingly fast.great! Does he now need to go into the cancer clinic every day? Sal and I haven't heard about his upcoming transplant regimen, so we are very curious about the exact process, etc.
Monique
I will keep you and Sal (and everyone) posted on how he is doing and the follow up. Please do the same. I have learned so much from everyone.
Fyi not sure if I have ever advised but my husband's name is Harry.
Thank
Colleen
Congratulatins on all the wonderful news, it is so good to hear! You are the only one I have heard about getting a stem cell transplant from a twin, that is so awesome. Keeping you in my prayers that all goes well.
Take Care,
Suzanne
God bless you all
Julie
Thinking about and praying that all is going well today! Onward to good health!
Take Care,
Suzanne
I am glad that sibling rivalry sometimes pays off. You will get well faster than anyone else. Congrats.
Cliff
Not much report as yet. Happy Day +2 Keir - hope you are going well :) Colleen - glad hubby is ahead to give us some pointers. Suffered slight nausea the last couple of mornings but have been keeping it well under control with meds. Was untethered from drip yesterday as I was drinking plenty of fluids and as I wasn't requiring Cyclosporine my kidneys were more protected. My counts are going down slowly but still pretty healthy (wbc 2.7 and neuts 2.4) so have been able to free up the poor nurses to look after the other patients requiring more attention in their stages of transplant than me. They have assured me when it is my turn for intensive care that they will be right there :) Have felt well enough to do some work from my hospital room which has helped a bit with the tedium. Mum and my twin are still here until Sunday and my daughter flies back up tonight - yay! My twin has also been 'talking' to my cells every day telling them to 'do their job and behave'. I never argued with her so I would warn them not to do the same x.
The long distance is annoying at times, but I did manage to go back after each round last year to help out and Facetime is amazing which meant we could chat every day :)
Let me know if you would like any help or break... I can make a mean lasagna if you need some home cooked meals for the family :) .
I know what it is like to be in a strange town / house when you are trying to get better. Mum was in Perth but lives in the country so she was in a temporary apartment as well.
Good luck sending all my best thoughts :)
My mum is sick of hearing about it all but don't forget to drink lots of water :) flush all those bad things out of you
Sending lots of positivity your way
xxx
Sending a smile,
Colleen and Harry