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.
Guys,
I think most of us who have had AML treatment and especially those who have had transplants talk about "chemo-brain." I know that I frequently get the feeling that I have lost some of my cognitive ability. Mental status post-transplant is actually a relatively hot topic of research. The problem with many of the investigations is that mental status was evaluated AFTER all of the treatment. That is not unexpected, since I doubt that any of us had any reason to have our cognitive skills tested before we were treated. In any event, I read an interesting article (ugh....I know I shouldn't read and have promised myself that I will not look at anything specifically on AML) entitled "Mental Status Changes Following Stem Cell Transplant." It was published in 2010 by the NIH. The researchers are from Brigham and Women's Hospital (where I did some of my training), and I trust them. It was a prospective study and the study group were being treated for either MDS (applicable to some of us) or CML. Nevertheless, the bottom line made me smile:
"Thus, the results from this study could reassure prospective HSCT recipients in that this particular treatment compares favorably to other treatments when mental status side effects are considered. Indeed, the overall pattern of measures of neurocognitive function indicate
that there is improvement over time."
I find this very reassuring and feel that a good portion of our intuitive feelings that we have "lost something upstairs" is due to anxiety, the effects of the many drugs that we take, poor sleep, poor nutrition post-transplant and a variety of other things, including depression.
So let's focus our concerns on getting back into the swing of life! Go Team Transplant 2013!
(Hmm....Now what was I just talking about? I can't remember....Oh yes....)
Just kidding!
Love you all,
Cliff
I think most of us who have had AML treatment and especially those who have had transplants talk about "chemo-brain." I know that I frequently get the feeling that I have lost some of my cognitive ability. Mental status post-transplant is actually a relatively hot topic of research. The problem with many of the investigations is that mental status was evaluated AFTER all of the treatment. That is not unexpected, since I doubt that any of us had any reason to have our cognitive skills tested before we were treated. In any event, I read an interesting article (ugh....I know I shouldn't read and have promised myself that I will not look at anything specifically on AML) entitled "Mental Status Changes Following Stem Cell Transplant." It was published in 2010 by the NIH. The researchers are from Brigham and Women's Hospital (where I did some of my training), and I trust them. It was a prospective study and the study group were being treated for either MDS (applicable to some of us) or CML. Nevertheless, the bottom line made me smile:
"Thus, the results from this study could reassure prospective HSCT recipients in that this particular treatment compares favorably to other treatments when mental status side effects are considered. Indeed, the overall pattern of measures of neurocognitive function indicate
that there is improvement over time."
I find this very reassuring and feel that a good portion of our intuitive feelings that we have "lost something upstairs" is due to anxiety, the effects of the many drugs that we take, poor sleep, poor nutrition post-transplant and a variety of other things, including depression.
So let's focus our concerns on getting back into the swing of life! Go Team Transplant 2013!
(Hmm....Now what was I just talking about? I can't remember....Oh yes....)
Just kidding!
Love you all,
Cliff
I was hysterical by the end of the post. My family was so worried about me losing cognitive skills that they download odd things to my iPad. My son is an interesting young man and downloads simple matching games, asks me to play scrabble, shows me intricate card tricks (is patient when I forget the card I picked). I try to play a few simple games each day. The other thing I have some trouble with is writing, so I practice every day. The other thing suggested to me was coloring in lines. All simple , but after a few weeks I felt like things came together.
A funny comment by my husband a few weeks ago, we had been talking and I completely forgot something and looked to him to reply - he looked me straight in the eye and said I forget. I asked, "what, seriously, what is your excuse, since I have chemo brain"? His reply,
"Second hand Chemo".
Never laughed so hard in my life.
Happy Sunday! The sun is out. We are here. Make is a peaceful day.
Peace, love & hope,
Andrea
I am glad you laughed at my post, it took me 5 minutes to stop laughing at yours. We are so lucky to have the spouses that we do. It keeps things a bit lighter! You have great kids, I must reiterate. So do I. I am just skyping with my son who is getting his PhD in Montreal at the Neurological Institute. Aren't computers the best?!!
Cliff
I have not heard of anyone who has been disabled by it (yet) -- my feeling is that yes, its there, and its going to catch us once in a while, but if you really get your brain back in gear after chemo it should not be a real issue. I would expect age and other things could be having as big an effect. I also think that when it comes to the brain that as long as you do not have alsheimers or one of those really disabling things, you can improve your brain dramatically by exercise. This is probably not true of the other organs of the body. But if you challenge your brain and do some memory exercises and perhaps play a game like freecell -- these things can all increase your brain's abilities. I understand we only use 10% of our brains anyway, so there is a lot to spare as long as the chemo did not just concentrate on one small area.
Food for thought -- no pun intended ... well maybe it was.
-- dave
I have been back at work for almost 1 year and chemo brain is now 90% gone.
Lisa
I have to write everything down, make tons of lists for everything.
That's the only way I can keep track of things. As I've said before, Ben seems to remember everything.
I believe it's true, what Dave and Lisa say, you can get most ,if not all your brain function back, if you work on it.with puzzles, and cognitive games.
Looking forward to another day!
Have a great day everybody!
Sandra.
The neurons of the brain do not divide and are thus very resistant to various insults. No one doubts that there are cognitive changes after going through all of this stuff, but it is so multifactorial and to a major extent reversible. If you think about it, the stress (shock) of all of this is very taxing.
I think that Lisa is a case in point. She feels that she is virtually back to normal. I do not want to remember a variety of aspects of my treatment, and hope that my fuzzy recollections of that torture will remain fuzzy.
Cliff
The point being, when I think of chemo brain I sometimes feel I have it, and when I don't I feel like it isn't an issue. I believe alot of what we have is created by the stress of what we have all gone through and I do not deny any feelings of it's validity.
One thing I KNOW is I NOW have a brilliant perspective on what is important and what is not, and in my work related environment I am no longer tiptoeing around issues. I say what I feel and am much more honest than I have ever been. This is a pure silver lining. Regardless of what I am facing "I HAVE fought bigger battles before!'
Not sure if this relates to Chemo Brain, but it does relate to stress. Sometimes when I am discussing a future project, and we decide it is best to push until "next" Fall or "next" whatever... I agree. Then I pause and wonder where I will be medically at that time in my life. This is unavoidable and definitely creates stress which might take me out of a conversation I would have normally been extremely focused on.
And "second hand chemo made me laugh out loud.
just my two pennies. love to all.
Ed
I used to have a excellent memory until I became pregnant. So with 2 pregnancies, 2 induction chemo's, 3 consolidation chemo's, 1 BMT and 6 cycles of Breast cancer chemo - my brain is no longer the Folifax of information it used to be. I now make lists - plenty of them!! Often lose my train of thought mid conversation and forget why I walked into a room, but then so does my mother!
Glad to know I'm not the only one!
Nicole
I don't know if I have chemo brain or not. I think the more I think about it, the more addled I become. There is so much to think and worry about in our lives. That doesn't help things. I now feel anxious about telling my wife or kids something, because I don't always remember to whom I had already given that information. It is especially anxiety provoking when I am told (innocently enough) by one of my kids, "You told me that yesterday" or "How can you not remember that?" One thing for sure, all of the research on cognition suggests that we keep challenging our minds, keep physically active, eat well, and get adequate sleep. That's what we all need to do.
It is also interesting, as Dave has pointed out, how some of the deficits of which we are concerned, were deficits that we have had for many years. I NEVER forget a face...NEVER. But I have had tremendous trouble with names all of my life. That is because I am so busy looking at someone's face and mannerisms that I don't pay attention to their names. My "agnosia" goes beyond that, because not knowing names has made me anxious enough that I have to rehearse the names of people I know well, before attempting to introduce them to my wife and family. I'm not great at left vs. right and hate to give or take directions to destinations. So, the bottom line is that the chemo might not have altered my mentation much. I am exactly as I always was - - only more so! Now, where did I put my keys?
Cliff
Has anyone else had problems with hallucinations during their chemo? I did. I went into a hullcination period that I think lasted for days. I was very ill at the time.
Parts of it were amazing and some of it absolutely terrifying. For a long time I couldn't talk to anyone about it. If I tried, I would start to well up.
A few weeks later, a close friend knew I was holding on to something that was disturbing me and dragged it out of me. Very helpful. Even thinking back on it now to write about it, brings emotions closer to the surface.
A part of the hallucination was that I was no longer linked to the bed. I had somehow floated away from it and had broken the link and didn't know how to get back.
Sorry for the long ramble. I usually keep this stuff locked down.
Cheers
Jon
All I will say is yes. The weirdest hallucinations ever and it had to do with mice. Enough said.
Andrea
Like you, my hallucinations came when I was septic and in the ICU. Although I do not remember any of the details, I do know that I was plagued by visions that were not real and became somewhat paranoid that someone was trying to kill me. The brain is a mass of interconnecting pathways between various brain structures involved in cognition, emotion, movement etc. When a person is very ill, his or her brain does not work well, with information taking the wrong pathways sometimes. I look at my most frightening experiences as just that - frightening experiences. Everything that we experience in our fight to become healthy is stored in our memory banks. Fortunately, as we all become stronger, the worst memories are shelved in the "annex," and the most positive feelings are on the "best seller list." I know that I have said this many times before, but being able to share the best and the worst with all of you is, to me, like a gift from God. I treasure all of you.
Cliff