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 :(
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Sounds like your ploughing forward keep up the positive thoughts.
Planxty
So glad to hear your counts are on the way up. I was shocked how quickly my mouth sores healed once my anc went up. So sorry about the nausea. I'm sure they'll find a med that helps.
Praying for all of team 2014
Julie
Dave is right about the sodium bicarbonate gargles. See if your nurses can make it up for you. It really helps the mouth and throat sores (since it is alkaline and neutralizes any acid that might reflux). Your numbers sound good and will only improve. It was hard for me to eat when I had sores in my throat (that was only after TBI prior to transplant). I never realized how unusual I was, but I never had nausea or vomiting during any of my treatment (they were administering anti-nausea prophylaxis). The sudden vomiting might well be reflux exacerbated by an irritated stomach. We all forget that chemotherapy not only kills bad marrow cells, but it does a number on our hair follicles and the surface epithelium of the intestinal tract. So baby your gut if you can. I also agree with Dave about increasing the water intake.
BTW, I think that Dave just might be a physician in disguise. He is always saying the things that I am thinking.
Cliff
God's Blessings,
Julie
I was also released on day +13 like you and never looked back. Today I'm +561 here's to your 561.
Planxty
Thanks for the kind words Cliff -- perhaps we are kindred spirits reading each others minds. Lots of good vibes on this thread. We are counting on Tas to give us another good report shortly -- dave
Congratulations on your counts coming up and going home! What a wonderful feeling. Fatigue was the hardest thing I had to deal with, just taking a shower and my medications wiped me out. It does get better but be patient with yourself. Living so close to your treatment center is a bonus.
Take Care,
Suzanne
If you need any comfort home cooking just let me know ( im a great low bacteria diet cooker ) .... or if you want to borrow any kitchen stuff to make things easy.... I understand keeping away from people and limiting contact with anyone, so happy to make sure its all disinfected, and just leave by the door :)
xxx
So glad you are heading home, mum is still in hospital but after that also has a 6 week wait in accommodation (as she lives in the country)
Hope her treatment goes as well as yours
xxx
Blessings,
Julie