[DanL]

Sorry that I am so late to respond to these good questions. Like you, I was diagnosed at a young age in 2010 - 36 years old. I was initially misdiagnosed as having ITP, but was later found to have MDS. I did not receive any additional treatments until November 2013 when my MDS started evolving. Up until that time, I had normal white and red counts, but only had 20k-30k platelets. I did not receive any transfusions during this period of time. In 2014, I was entering a blast crisis and had 16% blasts in my peripheral blood. In February 2014 I had an unrelated donor stem cell transplant. I partially relapsed in August of 2014 and received 6 cycles of Vidaza. I have been free of disease and treatment since February 2015.

I tell you this to answer your first question about life expectancy - 4.5 years for low-risk patients is an average, but as noted in a previous post, that takes into account that the average patient, at least in the us, is 71 years old. It is rare for somebody under the age of 60, but even rarer under the age of 40. MDS is extremely individual on its effects on patients. I have met some people who have survived 10 years or more without transplant, and have met several transplant patients who have been alive for more than 20 years post-transplant.

It is not an easy disease or path, but as medical practice improves, so does life expectancy. The information on long-term studies by definition is at least 10 years old, and in many cases 20 years old. They are retrospective in nature and sometimes lack adequate sample methodology, so the law of large numbers does not apply to your case.

As for the diet, I think you have received a lot of good advice already from other members of the forum. Personal experience says that drinking makes platelets not function properly, especially when they are lower in number. Try to avoid activities that will likely cause deep bruising, especially to the head. Also try to avoid getting un-necessary infections - be careful with sharp instruments, like knives. Treat wounds immediately, and if possible, avoid people who are ill when your white counts are low.

I wish you the best of luck in your journey.