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,
I am 42 years old, diagnosed about 2 months ago. Went through 7+3 and went into remission (some of the doctors think my remission isn't "good", since they saw more than 5% blasts, other saw less).
Had round 1 of consolidation chemo.
I have "good" chromosomes, negative for FLT3 and I am NPM1 mutated.
I am supposed to have 2 more rounds of chemo. And I wonder if people are really cured with chemo alone, or is this just meant to buy me time and then I will relapse and need a BMT. I'd love to hear others' experience and of people you know.
My siblings aren't a match, if I end up needing a BMT, it's not even sure I'll have a 10/10 match. Anyone had 9/10 BMT?
And finally - one expert recommended for me an autologous BMT (they'd collect my Stem cells and then I'd go through self-transplant). He thinks for my type of AML it's better than chemo alone. I am concerned that if I go through it and relapse, the chances of getting a BMT from MUD successfully are slim because of the tough pre-transplant chemo I'd go through in a self-transplant.
Does anyone know people with AML who had autologous (from their own stem cells) transplant?
Does anyone know someone with AML who underwent more than one transplant? Relapsed after transplant and had to have a second one?
Thank you!!
Abby (I know there's another Abby on this list. Funny coincidence!)
I am 42 years old, diagnosed about 2 months ago. Went through 7+3 and went into remission (some of the doctors think my remission isn't "good", since they saw more than 5% blasts, other saw less).
Had round 1 of consolidation chemo.
I have "good" chromosomes, negative for FLT3 and I am NPM1 mutated.
I am supposed to have 2 more rounds of chemo. And I wonder if people are really cured with chemo alone, or is this just meant to buy me time and then I will relapse and need a BMT. I'd love to hear others' experience and of people you know.
My siblings aren't a match, if I end up needing a BMT, it's not even sure I'll have a 10/10 match. Anyone had 9/10 BMT?
And finally - one expert recommended for me an autologous BMT (they'd collect my Stem cells and then I'd go through self-transplant). He thinks for my type of AML it's better than chemo alone. I am concerned that if I go through it and relapse, the chances of getting a BMT from MUD successfully are slim because of the tough pre-transplant chemo I'd go through in a self-transplant.
Does anyone know people with AML who had autologous (from their own stem cells) transplant?
Does anyone know someone with AML who underwent more than one transplant? Relapsed after transplant and had to have a second one?
Thank you!!
Abby (I know there's another Abby on this list. Funny coincidence!)
Thanks for the detail and honest update. I don't have much to say about the physical part of consolidation except that it is long, rough, and physically demanding on your body. The good news is your are almost over it. As for me, with my age being what it is, my chemo was far weaker than what you are receiving, which is also why the two year survival rate for those over 65 is far lower. So bad news is it is much harder physically for you, good news is it is doing a better job.
As far as the emotional wild ride you are on, welcome to the group. When I think back to last spring while I was going through treatment, it all flows together to a wild trip of highs, lows, planning for the future, worried about the future, and re-examination of what is truly important in life. As time in remission passes, it all seems like a bad dream. Has my life changed, yes. Will your life change, yes. Every morning when you wake up, realize that you are starting on the first day of the rest of your life. I can say I am a better person and enjoy life more than before this disease picked me out.
Hang in there, give thanks for your survival, and treasure the life you have.
Ollie
Chemo only can definitely work by itself. My doctors had told me initially that there wouldn't be a doctor anywhere (in or out of the USA) who would transplant me with the type of AML (inv16) I had. There is much success with chemo only for many patients, depending on the type of AML and patient health, etc. And yes, you're right, the backup plan is there if you need it (BMT). So, Im a believer in chemo only. The odds are in your favor that you wont need a BMT.
The consolidation treatments did get harder for me, too. I figured I was just weakened each time around. I think that might be a pretty normal reaction. Chemo really takes it out of us and we aren't given enough time to recoup before we get knocked down again.
About the sadness. Dont ever worry about sounding too depressed. This is the place to say it. I cried a lot. I cried because I felt so crappy and sick. I cried because I was incapacitated by the illness that took away my independence to do simple things. I cried because I might die. I cried because I didn't want to leave my family behind. I may have done it privately since I tend to be a bit outwardly stoic, but I cried rivers. Anyone coming to grips with the awful possibilities of this disease are bound to be devastated and depressed with this sudden new realization. I was lucky to never fear the thought of actually dying, but didnt want to leave my family either. For me, accepting (perhaps even embracing) the potential negative outcomes was necessary to get on with the fight. It's bad, it's sad, and now what do I do to try to get better? So for me, I needed to give voice to the sadness in order to move forward (that was not a quick process).
You, Ollie, and others have written about what we take away from the experiencea new appreciation for life. I guess that until you know, in your bones (no pun intended), what you could lose, you cant have the same appreciation for daily life and the people in it. I very much admire your ability to recognize this and appreciate life in the midst of treatment.
Sounds as though you are progressing through your treatments with both physical and psychological strength. Keep it up. Youre in the homestretch, and in a few weeks youll be feeling better and getting your life back (in more good ways than one).
Keep me posted on how youre feeling and what youre thinking. And dont forget to post your biopsy results. We all know what waiting for those results are like, even when we expect them to be good.
Therese
My bone marrow test came back normal, meaning - still in remission :)
So on with the plan of HiDAC chemotherapy.
I am taking lots of drugs against the nausea
And eye drops (I had a nasty eye side-effect in round 1 of consolidation)
And today, after chemo bag #2, my fever began rising, my body started aching like a really bad flu, my joints, muscles, bones, head.
I am the rare person who did not have a fever during induction, and during the previous 2 consolidation rounds. This is my first fever since I was diagnosed in August.
They think it may be a side effect from the Ara-C (Cytarabine). Did anyone have it?
So starting tomorrow, for the last 4 bags of chemo I'll get steroids as a prep.
Thank you for all the encouragement!
Abby2
Great news on the biopsy. Congrats are in order.
I didn't get a fever as a reaction to the chemo, so can't add anything there. Only got fevers after counts dropped and picked up an infection.
Hang in there. Hope those steroids work to take care of that reaction.
Therese
Abby
I am very happy for you.
I am having my last 2 bags of chemo coming up...and with this, tomorrow morning I'll be done with the planned treatment at this point.
This is exciting, and VERY scary.
Focusing now on these next chemo bags. Hoping they're really the last one I'll ever need, and then focusing and hoping the next few weeks of neutropenia and back up, go well.
Abby - I am joining your premeded club :)
As someone who thought 10 times before taking an advil only a few months ago, I just can't believe how many medications I'm getting on a daily basis....
And a question to those of you out there in remission or after a BMT. How long did it take for you until you felt you could make long term plans? And did the term "long term" change for you?
Thank you all. I feel very lucky to have found this group.
Abby2
Congratulations on getting toward the end of your treatment!!!
Hooray!
Not sure what you mean by long term. I don't know what I mean by long term anymore. Let me say that I made plans for a trip in February but took out trip insurance for the condo costs just in case. Am starting to think about when I will feel strong enough to go back to work, but I know it won't be in the next several months (I need to get off some of the drugs, i.e. immune suppressants, and build up a whole lot more stamina). I made reservations to take the grandkids to the ocean this summer but only put a deposit on hotel rooms cause I'm not that sure about what might happen between now and then. For me, making it one year (this Feb) will be a major milestone and making it two years will put me a very good psychological place for long term planning.
When I had my initial chemo treatment (Feb 2010), I was scheduled to go back to work the following December. This time around, since the transplant in Feb 2011, I am not as strong, so it will take a little longer, but I am looking forward to going back to work perhaps next year. Kind of long term planning? Well, maybe not what I used to consider long term planning!
A few months ago, I didn't know how I would feel the next week and was hesitant to make any plans at all, so I've come a long way!
I feel very, very positive about the future but "long term" does have a different meaning to me now.
Therese
Abby
Today I am officially DONE with chemo! This plan of treatment is done! It was an emotional moment when I was hooked into the last bag.
I asked my doctor today if there's a real chance that this is enough. And she said, she looks at it the other way around. This is the treatment indicated for my sub-type, chromosomes, etc. So this should be enough. And of course, there's a chance it can return...
Abby2
Congratulations on finishing your last chemo! Hooray! What great news. Hang in there while the chemo does its work and then you're on your way back to health!
Therese
One of the nice things that has happened is my primary doctor has switched his concern about the cancer to other long term health care. Remission is truly wonderful, and I am enjoying every moment of it. That world is also opening for you.
Ollie