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.
Maybe this is a question for Cliff and Dave, but anyway, Id like to post it in public.
It was very painful to know that my AML is the M0 type. I read in some internet papers its the worst one. As I said before, in Central America we dont have public nor private labs to make advanced tests, and though I got the chance to have a citometria de flujo to find out it was AML M0, nothing else was said. No cromosomic studies at all.
Then, in Spain, doctors told me that prognosis was made depending on the type of mutations that were found in other tests that were not done on my sick tissue (blood). I also remember that my bone marrow was "packed" and useless, so citometria de flujo was done on blood.
On Christmas day, my nephew-in-law, who is a medical doctor (not a hemathologist nor an oncologist) and lives in Miami, told me not to worry about being a M0 and that this is no longer considered the worst one. He also said that blood tests and LDH (or LHD ?) where enough to find out if I was relapsing. But I remember that my LDH or LHD was normal when I was diagnosed.
So, Im confused..... could Cliff or Dave give me a hand?
Thanks....
It was very painful to know that my AML is the M0 type. I read in some internet papers its the worst one. As I said before, in Central America we dont have public nor private labs to make advanced tests, and though I got the chance to have a citometria de flujo to find out it was AML M0, nothing else was said. No cromosomic studies at all.
Then, in Spain, doctors told me that prognosis was made depending on the type of mutations that were found in other tests that were not done on my sick tissue (blood). I also remember that my bone marrow was "packed" and useless, so citometria de flujo was done on blood.
On Christmas day, my nephew-in-law, who is a medical doctor (not a hemathologist nor an oncologist) and lives in Miami, told me not to worry about being a M0 and that this is no longer considered the worst one. He also said that blood tests and LDH (or LHD ?) where enough to find out if I was relapsing. But I remember that my LDH or LHD was normal when I was diagnosed.
So, Im confused..... could Cliff or Dave give me a hand?
Thanks....
I am not Dave or Cliff :)
However, I do know about typing and prognostic factors.
Here too, I wasn't even told what sub-type I am, since they consider it an older way of sub-grouping the AMLs. They focus more on the chromosomes and genetic mutations.
For example, knowing if you're FLT3 positive or negative is key
Knowing if you have normal or abnormal Karyotype (chromosomes) too.
In both cases, if FLT3 is positive OR if Karyotype (chromosomes) are bad, here they'd go for BMT, if available.
There's other things such as NPM1 gene and other genes that are important, depending on FLT3 and chromosomes.
In any case, I believe the percentages of relapse and cure aren't something to focus on. They all depend on your age, your sub-sub-types, how you react to chemo and/or BMT, and pure luck :)
I don't know what LDH or LHD is... I know that when I get a blood test my doctor looks mostly at platelets and hemoglobin (and total neutrophil count)
Good luck!
LDH means lactate dehydrogenase. It is an enzyme that is found essentially in every cell and tends to go up when there is a tremendous amount of cell proliferation (reproduction), especially in such malignancies as leukemia and lymphoma. Like most non-specific markers, it is not elevated in everyone with leukemia. Like you, my LDH was normal on diagnosis. However. if it is elevated, that is a possible indication of relapse.
Although I am a physician, I have said many times before in my posts that we should not try to interpret our lab tests. I include myself in that warning. Labs that are not in the normal range do not necessarily mean that something bad is happening. All normal lab ranges are based on a bell-shaped curve, and someone who is not abnormal may still fall beyond the upper or lower limits.
With regard to prognosis....(and forgive me guys for repeating this)...a friend of mine who is a physics professor who is now taking a sabbatical with his wife in Viterbo, Italy [and my son got to stay with them 2 months ago after he presented his bilingualism research in San Sebastian, Spain (I live vicariously through my children these days)] told me (as a cancer survivor himself) that "cancer is a BINARY disease...you either get better, or you don't." Looking at statistics serves no purpose other than to frighten or depress us. Looking at ourselves as being the 1/10 or 1/1,000,000 who survive is the way to go. Who cares what the chances for cure are? We are taking the right roads toward good health and doing everything we can to get to the finish line (or sled to the finish line in the case of Therese).
I think that we should all adopt Ollie's attitude when he said that "we are all going to die." He was certain that he would not die of his AML, yet in medicine there is absolutely nothing that is completely certain. But if you look at Ollie's posts, his positive attitude was and I hope still is, his guiding light. Let's all look to the future. A new year is coming. There should be nothing but hope, love, and peace. It's okay if we put our "blinders" on. We deserve to be a bit selfish as we try, although never as valiantly as Ollie, to swim against the tide.
I love you all.
Cliff
And... Cliff, ddp..... thanks too, to bring me to the point.
Its true. Its our attitude what matters. In fact, it helped me go through chemo and win that battle. But going back to normal life has been so hard for me, that sometimes I lost perspective. Unfortunately, I cant change it since no mid-time jobs are available in my country.
I pray the Good Lord not to leave me since I may fall down again.... I have to keep hope.... I only need extra energy to cope with each day activities.
Thanks again. I am a blessed person, no matter what, since I had all I needed to go through that battle.
Cliff
Regarding positive attitude, of course, it doesn't hurt anyone, but I think its importance is overrated. If positive attitude would improve survival, my Dad should be surviving. He didn't think for one minute that this thing will end badly for him. He was completely sure of a good outcome. Survival and the result of treatment depend on the age of the patient, his/her general health, and genetic makeup of leukemia. If these are not favorable, positive attitude is going to do little. Just my humble opinion. I do hope better targeted therapies will be developed for AML, especially for patients over 60 who get it the most.
Regarding the positive attitude, I had an interesting conversation recently with a friend who's dad was just diagnosed with cancer (not AML), and who was angry at her dad for his lack of positivity. I don't know if there's research about positive attitude and survival.
I suspect it's not necesarily correlated.
I do think it makes the journey a bit more tolerable, both for the patient and for the family and friends.
I think you hit the mail on the head that it makes the journey more tolerable if you have a positive attitude. I'm not sure of the effect it has on outcome, and I feel a bit conflicted about it. On the one hand some doctors have said to me that they think a positive attitude helps, on the other I feel that there is a bit of a "tyrany of positive thinking" in the field of cancer treatment. There will always be days when we feel down, should we really be made to feel guilty about being upset because it may affect whether or not we make it as well? I think that, for me at least, there is some guilt attached to this diagnosis, did I not exercise enough or eat enough fruit? Silly I know but the media is so full of articles on top cancer fighting foods etc that it seems as if, had one done the right thing, this situation could have been avoided.
In reality I suppose it was just bad luck and part of how uncontrollable life really is, despite all our best laid plans. I think Ollie's interpretation of positive thinking is the best, view every day as the beautiful gift that it is and don't sweat the other stuff.
Yes, "tyrany of positive thinking" is so correct! It made me laugh. You are also right that it does make a journey much more tolerable. But I believe that it is also OK not to be positive-at least sometimes, especially because often there is not much to be positive about. To demand positive thinking from cancer patient is cruel. I believe it is OK to be upset, to cry, to be sad. And it is OK to grieve. All these are normal and natural reactions. I think that caregivers have to meet the patient where he is emotionally and not to force anything.
Mt father was a healthy 67 year old when he got sick. He had slightly elevated blood pressure and mild diabetes (both fully controlled). He always took great care about his health-physical and mental activity, sleep schedule, food... The whole nine yards. And none of this helped. So I don't believe in these articles anymore and don't read them. There is some truth to all this advice but it definitely doesn't apply in the case of AML.
About keeping a good attitude.... ouch, lots to say. I think in the very first moments we need to leave our feelings out, to let them flow, no matter what they are. I dont think of anyone happy to have cancer. Shock, anger, guilt.... they are there.....
But I do think that a realistic-positive attitude helps, once you overcome the first phases of grieving. Why? And, what is a "possitive attitude"?
I thinks its not to beleive nothing happens. That's denial. What I think "possitive attitude" is trying to help the most to get inner pace and to get the best possitive results, most of which dont depend on us.
Possitive attitude is trying to eat even if Im not hungry. Its feeling grateful for a moment of mental peace that comes even in a bad momment. Its discovering the love of our friends, of our family, of our doctors. I remember how good and grateful I felt when I saw my onc coming with shinny eyes telling me I was already in remission. I remember how well it felt when friends sent emails. When hair started to grow again. When I got my stiletto go to the onc consult and though I had to ask for a wheel chair since I was too weak to go by myself.
I dont want to say Im the example patiente I just mean that if we can focus on our "plus" instead of our "minus", we will have some peace of mind and feel better. No matter what the result is.
Blessings to all.