Sloan-Kettering Visit

So tomorrow I am heading into Manhattan to go to Memorial Sloan-Kettering to see a Pancreatic and Nutrition expert. The doctors name is Robin Mendelsohn,  she specializes in taking care of high risk cancer patients and specialized nutritional support for cancer patients. Erdheim Chester disease is not technically cancer but histiocytes do multiply and spread with the ferocity associated with an aggressive cancer and as the disease progresses, manifestations can be found in the nervous system, eyes, pulmonary system, heart, lymph nodes and kidneys.

So anyway I talked them into seeing me...with a inch think packet of doctors reports, lab reports, and Cd's of lots of tests. Plus a very serious plea that they see me soon because my weight loss is continuing (down now to 151). My appointment is tomorrow and I was going to go by myself but then DawnMarie saw the doctor.

Dr Robin Mendelsohn

So now she is going with me. Which is good because it always nice to have support at the doctors office, lol. But seriously...Sloan-Kettering also has a team of scientists that were awarded a grant from The Erdheim Chester Disease Global Alliance to do more research that will hopefully someday lead to a cure. I am hoping that Dr. Mendelsohn in collaboration with that team will end up being my support team here in NY.

If we don't get answers tomorrow then maybe we will at least start getting some of the right questions.