Quote:
Originally Posted by TASHMAC
I just continue to tell myself that for every year I remain alive and reasonably healthy is another year that modern medicine has to learn more about the disease and improve the means in which they treat the disease. I have tried to surround myself with positive stories and it does seem that there are a number of people out there who simply needed a second round of IST to beat this "bloody" disease and I hope that I am one of those people who has now beaten this disease. I do however believe that I will be taking cyclosporine for a very long time but hopefully the dose will be able to be reduced over time.
I wish you and your wife all the very best and if you have any questions please let me know.
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Tashmac, thank you for the long, detailed reply and for sharing your personal story. It was a very interesting read!
I completely agree and relate to your thinking, that as each year passes, medicine makes progress and that improves our odds. That's what gives me hope.
Hope alone, though, is not good enough for me - so I keep digging and trying to find new research, studies and whatnot, to try and push it forward faster
I believe that in some ways the decision was more clear to you, as you had two young children to take care of and any immediate chance of mortality was out of the question, disregarding long-term effects.
I'm very happy it worked out for you, and hope you remain in remission for an infinite amount of time (or until they finally develop a real cure!).
One of the reasons that have me worried is that my wife really wants children and I am reluctant to even think of a scenario in which a second round of IST is followed by having a child, then closely followed by a relapse. That would be a disaster.
My wife's doctors insist on starting cyclosporine at 50 PLTs, and whether it helps or not we'll find out later. The kidney-related effects of cyclosporine can be very serious if it's taken for a prolonged period, so we're trying to consider that as the doctors' main, logical reason for not starting her on it sooner.
BMT outcomes are steadily and significantly improving over the years, to the point in which - in recent years - MUD results are very very similar to MSD results, so this encourages us.