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.
Hello, this is my first visit and just wanted to tell my wife's story and see if anyone had any of the same issues. She is 37 and was diagnosed on May 6th 2012. Genetics test say chemo only no transplant needed. At least not now. Went thru a week of induction fine and the last few days of May her blood counts rose quick and bmb says remission. Checked back in the second week of June for 5 days of consolidation. When it was time for the numbers to rise they didn't. It was almost 2 months for her neutrophil count to get up enough to even get out of the house. Everything finally got up just enough to do another consolidation. It was done the second week of August. The results were the same. Very long time on everything. White count is the only thing that got up to normal. Dr. says chemo is over. Another round and it may never recover. Bone marrow has to have some damage so basically the treatment is over with just induction and 2 consolidations. Moving on to the last 2 months now: Platelets got as high as 95, red count as high as 27. Last monday platelets dropped to 74, red down again too. Yesterday, platelets down to 47 and red count down to 23, white count 3.3. Her blood has been being sent to mayo and been looking fine. Yesterdays sample was sent and hope to hear something by friday. Dr. says definitely something going on. Basically waiting on those results from mayo and go from there. Just curious if anyone had any experience with some of the issues we have. Thanks for reading.
Great -- I knew there were several like me who had never had a "full recovery" as far as their blood numbers are concerned. That's OK -- we are like recovering alcoholics -- as long as we don't fall off the wagon we will be OK. That's why we never say that we are cured. Time is on your/her side -- the longer she is relatively healthy post transplant, the greater the chances of long term (normal life-long) remission. So, every day things get better. -- dave
As usual, I love your analogy. I think that alcoholics know that they have to be especially careful about their behaviors and we do too. Like alcoholics who have been sober for years, after a while our disease ceases to define us (it actually never should have defined us, but it unfortunately does for a while). What I meant in my convoluted sentence is that there is an interplay between the environment in the bone marrow (which remains after marrow ablation) and the cells that are transplanted. Sometimes the environment is just right (as in Andrea and Phil, for example). Sometimes it slowly modifies in association with the new stem cells and the counts come up in an unpredictable way (like Lily's and mine). There are immune considerations that affect the rapidity of total engraftment. As long as the marrow becomes 100% donor as it did for most of us transplant patients, that is all that matters. This may be a race, but it is a foot race and not a 100 yard dash. The good thing about the former is that you get to enjoy the scenery (which includes the love of all the people here and the love of family) as we navigate the speed bumps and move forward.
Cliff
RBL -- WOW!!!! GREAT NEWS! That's what we live for on this forum. I am a chemo only Dxed with AML caused by MDS (or perhaps better stated, correlated with it, the MDS as I understand it being the observation of weird shaped blood cells).
Being 37 and hopefully in good health, she could probably have not problem with a transplant. Some here might comment on GvHD -- it is worse for some than others. If they advise a wait and see with a frequent review of the blood and BMB, I would accept that, since that is what I am reading between the lines. I would weigh the various transplant alternatives very carefully. It is indeed a very difficult dedision.
I was greatly relieved when my onc told me that because of my age (65-66 at the time) a transplant would not necessarily give me any advantage survivalwise. It was a break even, so the decision was essentially made. Thanks -- dave
Keep moving forward. There are no words that can describe this journey of AML.
Time is of the essence and the doctors know that..
Have they already done blood tests on siblings and put your wife's name on the World BMB list? Things can change so quickly, that is the nature of aml.
Your wife is young and hopefully she is physically strong. Get other doctors opinions. Just don't lose heart...things will change again.
Your are both in our thoughts and definately in our prayers,
Sandra and Ben.
I am sorry to hear about your wife's relapse. I relapsed 11 months after achieving complete remission. I then had to have another induction chemo treatment and transplant, I received my transplant Jan 22. It has been a long hard journey for me as well as my family. Praying for your wife and you as you head to Vanderbilt. I hear that is a wonderful center and that they will have some good recommendations for treatment.
Take Care,
Suzanne
As disappointed as I am by your post today, your wife can get a transplant and start moving forward as the rest of us who have been transplanted have been doing. If you read the Team Transplant posts, you will see that we are thriving. If that is the recommended course for your wife, so be it. If an old geezer like me (60) can get through it, so will she. One thing you must already know. We are standing with both of you and will do anything that we can to answer your questions and keep you feeling positive about things.
Cliff
You ARE in very good hands. Don't worry that your wife is an only child. I have a brother and sister and neither were good matches. Nevertheless, 4 wonderful people were and I got my bone marrow from a German man in his late 20s. I am doing well, and so will she.
Cliff
I will be thinking of you and your family tonight. I can't begin to imagine how tough it is on your wife to be away from your kids during treatment; I think that she is going to be HIGHLY motivated to fight this thing and get back to them and a return to good health asap :) My Dad is going to have a transplant, as well (he just finished consolidation a week ago)- his siblings are too old to be appropriate as donors, so he may as well be an only child, too! It does look like he we have a good match from an unrelated donor - I'm sure that one will be found for your wife, too. All the best to you and your family as you weather the stress and worry of these next steps!
Robin
Im sorry that your wife is going thru this. Aml is tough to deal with, i remember my first admission into the hospital not knowing what to expect and scared out of my mind. Luckily,i had excellent doctors and nurses and i will forever be greatful. Attitude and faith is everything, make sure your wife keeps telling herself she's gonna beat this, and ask for gods help and she will get it. I'm now 3mo. Post transplant and it hasn't been easy but God baas blessed me and I'm very thankful and my friends on here. Our prayers are for you and your wife and family.
i am so sorry about your wife's relapse. It is tough to start the treatment all over again. Being so far away from kids is also difficult , which i totally understand as a mother and AMLer myself. However, i believe the kids can also be strong motivations for her to be strong and beat this.
When i was in hospital, when i was thinking the AML was going to kill me, i visualized being together with my daughter, going to school with her, playing with her, and attending her graduation ceremony, and wedding ceremony. Then, i found myself with a lot of power and confidence to fight and win this battle.
please take care. all will be good.
All of this is good wisdom. The cheerleaders are now in formation, and we are all ready for you wife to climb on our backs. We will not let her fall, so full speed ahead!
Cliff
My heart goes out to you and your wife, relapse is a big kick in the guts - I've lived it, I know - but you know what, you get back up again a be ready for the next fight - she can do it and with you by her side there is no reason she can't beat this. I'm 41 and have two kids 10 & 12, they were 6 and 9 when I was first diagnosed with AML. I found it very hard to be away from them and not part of their daily life but you get through it with phone calls and regular contact with their carers so you know what is going on. The school community were fantastic with meal rosters and offering to take my kids to and from sport training or social events. We put the message out and many put their names on the donor registry as well as blood donations as supplies were running low. Our local blood bank was inundated with school mums wanting to donate blood. Our Leukemia foundation also sent books the kids could understand to their teachers.
I'm not sure but if the blasts haven't shown up in the blood then I think that's a good thing, caught perhaps a bit earlier.
Thinking of you both. Please update the progress.
Nicole x