Dear rainbows and glitter,
I think you have gotten some very good, hopefully calming advice so I'm going to just try to give you some insight into NIH. I assume it's the one in Bethesda, Md.
My husband has been in clinical trials there since 4/09. We both believe they saved his life. Do not hesitate to ask any questions regarding anything to do with your care, hospitalization, hair, illness - or anything else for that matter. We have always had the doctors' and nurse's e-mail addresses and they have been amazingly quick with their responses - and extremely patient with any and all questions we have had.
When they talk about their protocol - they have a very strict criteria they have to follow before they can accept a patient. They turn many down - some that are members of this Forum. So when they say they haven't lost any patients within their protocol - they mean any patient who they have transplanted that fit the same criteria as yours. They are not in the business to mislead as they are extremely caring people whose personal and professional reputations are on the line. The #1 hematologist in the world - Dr. Neal Young - is over hematology. Their doctors are the cream of the crop and are on the cutting edge. I can honestly say that you can trust them with your life. We did with my husband's. He has MDS and at one point he was on his local oncologist's "death list". Since the last clinical trial he participated in (Promacta) he has been transfusion independent for about 1 1/2 years after two years of about 135 transfusions. Right now he is on no MDS meds. We still go every 3 months for a check-up - and as Neil said - all his care has been free. His whites and reds are now normal and at last check - this week - his platelets were 108,000.
Please feel free to e-mail me with any questions or anything else I can help you with.
shcalvert3@aol.com.
God Bless,
Sally