I have some questions about my girlfriends prognosis

[Cameron111]

My girlfriend had very bad aplastic anemia around ten years ago, she was I dunno, five, six, seven? She was young. She came to the USA to get it treated from another county and wound up getting a BMT (bone marrow transplant) from her direct sister. She recovered and she is alive now, she isn't still sick or anything.
I got really scared though, because I have been reading about the prognosis and the "survival rates" over time. I don't really know how to understand it. I just want someone who can explain it to me so I can.
She's been "cured" I guess you could say for ten years. She doesn't go to follow up treatment anymore. Does she have a new lease on life or is she going to drop dead before we are old? After a perfect prognosis, what is the survivability once you are "cured" ?

I'm just really puzzled because I hear information saying people consider themselves "cured" practically after a very successful BMT and "live much longer".

I don't know what this means and I really want some answers from someone who would know more than me.

[Sally C]

Dear Cameron,
I can understand your concern and worry. May I be a bit philosophical although I know you want definite answers.
There are no guarantees in this life - whether one has AA, MSD or is in seemingly great health. We are all going to meet the same end at some point. If you dwell on it you will drive yourself crazy.
Two years ago when my husband was not doing well with his MDS, we had a small party for close friends who had been very supportive since his diagnosis. A month later, one man who attended died suddenly of a heart attack - he seemed the picture of health. My husband is doing great now.
Life is unpredictable and many times not fair. But it sounds like your girlfriend is doing great. Enjoy and celebrate that and try not to worry about what tomorrow brings. Statistics mean nothing to each individual case.
I wish you both well.
God Bless,
Sally

[Cameron111]

Sally thank you for your words.
I know these things and life definitely has no guarantees. I am fortunate for how well she is doing now. I just wish I understood a little bit more about the prognosis of the disease, the information online seems scant and nondescript. Should I have any reason to think AA will return to her after her successful BMT of so long ago? And do you think her brush with AA may have inhibited her total... longevity?
I know I'm basically talking in circles but I panic easily and I feel like I'd rather know one way or the other instead of keep guessing. I know there is no definitive answer but I just wish I knew enough to be ready. Like how common relapses are for successful BMTs and etc.

[Sally C]

Cameron,
There are so many on this forum who know more than I do. But I do know that whatever anyone thinks may happen is just their opinion. I'm sure there have been successful transplants that were permanent cures and I imagine there are some that weren't. I know when my Mother had cancer in 1960 we were told if she was
cancer-free for five years she would be considered cured. She did live to the age of 76.
That your girlfriend had her transplant so long ago I would think bodes well for her. We were told that the only "cure" for MDS was a transplant.
I believe you are probably much younger than I am but as much as you worry you're going to be old before your time - and may make your own self sick. I remember a movie years ago. The whole movie was about a couple dealing with the fact that one of them had a terminal illness. It ended with a car wreck - and the healthy one died.
As much as you want to know the future and as much as someone wants to put your mind at ease, only God knows the future.
Make the most of each day with your girlfriend. That's all any of us can do. You're young - go out and have fun. If you are a man of faith, try and turn it over to God. He is the only One who has the answers.
She is very fortunate to have someone who cares so much for her. I would imagine though that she would like to leave that part of her life in the past and live her life to the fullest now.
God Bless,
Sally

[Neil Cuadra]

Cameron111,

There are two reasons to assume that your friend will live an average lifespan:

1. What we know: Her aplastic anemia was a problem with her bone marrow. It couldn't make the blood cells we all need to survive. During her transplant she got her sister's "good" bone marrow, which replaced her own "bad" bone marrow. Since she ended up with bone marrow that worked, it really is a cure. Since she had her transplant as a young child, she's in the group that (statistically) has the fewest side effects, and if there any residual health issues, such as concerns about future fertility, she presumably already knows about them. After a transplant, the primary concern for aplastic anemia patients isn't aplastic anemia, but getting some type of cancer, but the chances of that get smaller and smaller the longer it's been since the transplant. Being a decade past the transplant without problems is a great sign that all is well and stay that way.

2. What we don't know: As others have said above, none of us knows what lies ahead, so we might as well assume the best. Since your friend was cured of aplastic anemia, there's no reason to asume that she will have problems in the future related to her aplastic anemia in childhood. And there are plenty of reasons to assume that her future is as bright as her sister's, or yours for that matter, since all of you have properly functioning bone marrow!

[Karenish]

I concur with the other posters on here. A point i was once told by my consultant when I too was going though similar thoughts. They had in the chemo ward a patient who was riddled with cancer they gave him a very sad prognosis, but defying all odds he went into remission.....10 years later he went fishing, cast his rod a little too roughly ruptured his spleen and died....incredibly sad, but just echoes what everyone has said. You may think the worst about AA and think that it could do all sorts of bad things in the future, but just as equally it may not - in your girlfriends case the odds are that she will be fine!!! We are all going to die, that is the only fact of life, but hell, I put that away in a cupboard and don't open the door, each day I am on the planet I cram in as much as possible, I smile for Britain every day, I make people feel good about themselves, I feel very well indeed although my blood counts are way off normal, but they are keeping me doing all the things I love to do. Please heed the warnings, don't fuss and bother about maybes.....live for today......maybes may never happen and you have wasted all that time dwelling over them. Good luck for a loving long life together. xxxx