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-   -   Long term survival? (http://forums.marrowforums.org/showthread.php?t=3667)

VANS Mon May 20, 2013 11:24 AM

Long term survival?
 
Hello, I just discovered this forum and wish I had seen this years and years ago because for so long I've had unanswered questions about all of this! First let me introduce you to my story.. When I was 15years old I was diagnosed Severe Aplastic Anemia in November of 2002 and I was told I was in a very severe state as my platelets were 4 and hemoglobins were something around 20s. Anyways, I've had a BMT on December 23th (of 2002 still) from my sister which was compatible 5/6 and everything has been going very well since then, doctors always have been telling me everything was perfectly going well! I didn't experience any kind of GVHD or whatever you call it in english (sorry I am french canadian.. I know a lot of english but when it comes to those terms.. Not really used to them haha) So yeah everything has been awesome so far! My life has been somewhat miserable the first year of recovery because of the medications I had to take (Cyclosporin was the worst..) You know teenagers really enjoyed making fun of my swollen and hairy face.. Whatever I got over all of this now and I have been really in shape and I am living a pretty decent life now!

Right now I have been asking myself a specific question about all of this.. How long can I expect to live without any complications? I have been really anxious about it lately... I was 15years old back then and now 26 so it's been 11years so far

That's all what went through my mind right now but I'm pretty sure I got tons of other questions as well that I can't think of right now.

Thank you to everyone who posts in here and whoever made these forums as well! Have a good day.

Neil Cuadra Mon May 20, 2013 01:29 PM

VANS,

Congratulations on your long-term success in beating severe aplastic anemia.

If you had radiation or chemotherapy before your transplant then those could be risk factors in your long-term health. Two other factors are good news: you didn't have a problem with GVHD and you had your transplant when you were young.

The longer you go without any reoccurrence or new disease, the closer your life expectancy returns to normal. According to one study it takes about 30 years post-transplant before your life expectancy is completely normal, but that study covered many diseases and patient ages.

If your health is fine now then your future looks better and better every day!

VANS Mon May 20, 2013 01:53 PM

Thanks alot for your reply Neil,

I only had chemo back then, one thing though: They gave me prednisone (steroids) for a whole week believing I was doing GVHD because it was itching everywhere on my body but in fact that was only the massive hair growth from Cyclosporin coming out at the same time! (I almost didnt even hit puberty when I was 15years old and trust me Cyclosporin and the transplant itself made it come to light lol.. I grew up from 5foot4 to 5foot9 in a really short time and I was basically looking like Schubaca -_-) Anyways I bet lots of people had the same exact thing too! What about the long term effects of cyclosporin, a week of prednisone and other things I might have been injected during all of that? Do you think it's nothing to worry about? Also I have heard about ATG being used for people that don't have the option of BMT, but if I am not mistaken I believe I have had some ATG as well prior to the transplant, does that even make sense?

Thank you for your time!

Karenish Mon May 20, 2013 02:00 PM

I always smile when i see this question, and can understand it to a point. However, none of us know when our life will be terminated. You could be a picture of health one day and have a massive heart attack the next, but it doesn't stop us planning and living our lives to the full. Don't get hung up on how long, but more the quality of your life. Enrich it with amazing things, plan for the future - god only knows when he will want you as a sunbeam, so until that moment LIVE! xxx

Neil Cuadra Mon May 20, 2013 06:41 PM

VANS,

ATG is an immunosuppressive therapy that's very common for SAA treatment. However, you may not have had ATG since you had your transplant so soon after your diagnosis. It seems to me that there wouldn't have been time to have ATG treatment and see if it worked. My guess is that you went straight to transplant instead. To be sure, you could ask your parents or get the old treatment records from the hospital.

Your use of prednisone and cyclosporin was brief compared to many other patients. Some of them are on these drugs for many years. Your exposure to them certainly affected you at the time (growth, hair) but there may be very few long-term consequences or none at all.

You asked if you should worry about this. The answer is that we don't know what the future holds for us, as Karenish pointed out, and we can't do anything about the past, so there is little to be gained by worrying. But I still think it's worth understanding what happened to you as a teenager.

MDSPerth Tue May 21, 2013 12:53 AM

To put it lightly, they say it is every consultants ideal that you die from anything other than what they are treating you for :)

EmilyS Mon Jun 3, 2013 12:41 PM

I did not have a BMT but when the option was on the table, my doctor said that after 7 years, your life expectancy returns to "normal". BMT is considered a cure. The fact that you have survived so long without any complications (GVHD) is awesome. One thing I have to remind myself often is that no one knows how long they have on this Earth. Something else could cause my death other than AA, so like she said earlier... Just LIVE.


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