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...
Sending you strength!
Colleen
I can only reiterate what Dave has said (you will find him to be a very wise sage). You are so lucky that you have a twin sister. There is some controversy as to how necessarily inadvantageous it is to get a match that will not lead to GvL or GvHD. My situation is, in some respects, analogous to yours. My siblings were not matches for me. I received stem cells from a wonderful young man from Germany. However, unlike the other transplant recipients on this website, I got a T-cell depleted transplant. That means that the cells responsible for GvHD were removed from the donor's marrow sample prior to transplant. What that meant for me is that I never developed GvHD, but also that I did not have the GvL effect. As an aside, I had TBI as part of my conditioning regimen. I really think that most transplant teams are not using radiation much lately. It damaged my kidneys somewhat, and I am glad you are not getting it. A full conditioning regiment is just as good.
The bottom line is that even in the absence of a GvL effect, I am well at 2.5 years. I NEVER had to take prednisone, tacrolimus, sirolimus or any immunosuppressant. That is the trade-off, and I think you will do well getting your sister's marrow.
I am glad you joined our group. Our cumulative experience (?wisdom) is there for you if you have any questions to ask. I am thrilled that your experience so far has not been too bad. Keep it going!
Cliff
I am so glad that you found this site and felt secure sharing your story with us. This IS the club not of want to belong to but are so glad we have each other. I am a 48 year old mother to three daughters, ages 13, 11 and 9 dxd on 22 Mar 2013.
Yesterday I had my end of treatment consult and my hickman port removed after four rounds of consolidation. I have inversion 16 so I went to chemo route know BMT is plan B. The amazing BMT warriors with great success stories have made me confident if/when I need a BMT I will prevail. Before finding this group, I was so afraid. Together we are strong!!!
Please stay with us and let us help you with support, prayer, advise and love.
Blessings,
Julie
Cliff, I understand from my transplant team that they did away with TBI as part of their conditioning regimen after they discovered that there was no real benefit/difference to those treated with it to those without with more radiation related complications. I must admit I was quite relieved when I heard this. It is of great comfort to know you have survived so well without the 'required' GVL effect which I've read is so crucial to prevent relapse.
Of some comfort to me going into transplant is the parallel with customs from my mother's birth country, South Korea. There, the first milestone that is celebrated after the birth of a child is the first 100 days (similar to a christening in the western world). The next milestone is the first birthday where a special ceremonial clothing is worn and a small ritual is performed. Speaking with the transplant team was the only other time I have heard these two dates hold such signficance and I hope it's a good sign :)
Welcome and I'm sorry you had to join. This too will pass. This is my mantra every day and here I am 17 month post transplant.
I am 45 diagnosed May 12 , I have 4 children .
Wishing you the best
Planxty
.
I love your story and it WILL bring you luck. We are all behind you.
Cliff
I am a fellow Aussie and was diagnosed june 2011 when I was 47. I am a chemo only survivor and today(in sydney) I celebrate my 50th birthday. I am presently on holidays in Maui so with the different time zones I will turn 50 in 9 hours!
This can be beaten.
Stay strong
Lisa
Hopefully my husband, Sal, will be joining you (and Keir!) as a member of Team Transplant 2014. He is now 45, diagnosed in May with a sole abnormality of Trisomy 8. We have two teenagers, a girl (17) and a boy (15). Initially opting to go chemo-only, Sal went through induction and 4 consolidation rounds. Just 3 days before returning to work, we got the news that he had already relapsed. He has been in the hospital since January 2, and is now doing well after a rough patch a couple of weeks ago where he was septic. The first BMB soon after chemo was clear, so we are hoping the second BMB once his counts recover will show he has achieved remission and can move forward toward transplant. Sal has a sister who is a 10/10 match!
I'm very sorry you have AML but glad you found this group. There is so much knowledge and support here.
Warmly,
Monique and Sal
I am glad to hear that Sal is doing well. Damn the torpedoes, full speed ahead!
Cliff
Warmly,
Monique
Thank you so much for your best wishes. I appreciate you taking the time to think of me when you have enough on your own plate worrying about Sal. I hope he gets to start his transplant soon with no further hiccups so that we can swap similar success stories :) My twin sister is arriving from Hobart tomorrow to start the first of the neuprogen shots and aim to harvest the cells middle of next week. How does Sal feel now he is home?
So great to hear you are progressing on schedule. How amazing to have an identical twin, no better scenario. I'm praying for you both.
Julie