Posted August 03, 2011
FooAtari: It's Non-Hodgkins Lymphoma PTLD (Post Transplant Lymphopliferative Disorder).
It basically develops from the immunospressive drugs you need to take after a transplant. In most cases if it happens, it happens after a couple of years of the transplant. And they now have preventatie drugs patients get immidieatly after the transplant. I got it 14 years after the transplant which is very unusual. Also didn't really know about the condition at the time of my transplant so was no preventative drugs.
I don't need an operation (wish it were that easy, had four major operations so doesn't bother me), being a blood cancer not much to remove. Although I did need to have my spleen removed once it had grown to the size of a rugby ball last year. This seems to be where the Lymphoma originated as I understand it and how it was diagnosed.
I don't intend on ever giving up but this type of Lymphoma is hard to treat. The first type of chemo I had did not work and it is the main treatment for the type of Lymphoma that I have. I have a high level aggressive Lymphoma and when that treatment doesn't work it means it's going to be difficult to cure. The docotors have already discussed with me methods to hold it at bay as long as possible rather than cure it. I'll know in a couple of weeks if it's curable or not.
I have been keeping a blog about it all, and the first post explains my medical history until preent day if anyone is interested
https://hospitalmusings.wordpress.com/2011/06/19/hello/
Stay strong brother. I couldn't even imagine going through what all you've dealt with.It basically develops from the immunospressive drugs you need to take after a transplant. In most cases if it happens, it happens after a couple of years of the transplant. And they now have preventatie drugs patients get immidieatly after the transplant. I got it 14 years after the transplant which is very unusual. Also didn't really know about the condition at the time of my transplant so was no preventative drugs.
I don't need an operation (wish it were that easy, had four major operations so doesn't bother me), being a blood cancer not much to remove. Although I did need to have my spleen removed once it had grown to the size of a rugby ball last year. This seems to be where the Lymphoma originated as I understand it and how it was diagnosed.
I don't intend on ever giving up but this type of Lymphoma is hard to treat. The first type of chemo I had did not work and it is the main treatment for the type of Lymphoma that I have. I have a high level aggressive Lymphoma and when that treatment doesn't work it means it's going to be difficult to cure. The docotors have already discussed with me methods to hold it at bay as long as possible rather than cure it. I'll know in a couple of weeks if it's curable or not.
I have been keeping a blog about it all, and the first post explains my medical history until preent day if anyone is interested
https://hospitalmusings.wordpress.com/2011/06/19/hello/