Dec 05, 2010 - 10:21 pm
Hi, I just wanted to reach out and join this message board as the ACS seems to have some great people involved in their programs. I recently stayed at the Hope Lodge in NYC, and man, what a great program they have there!
I was diagnosed with a high grade monophasic synovial sarcoma in my right calf on October 27, 2010. It is about the size of an apple, measuring 8.3cm at its longest point and wraps around the nerve bundle and both blood vessels in my leg. Fortunately it has not metastasized though!
I have moved to NYC for treatment by Dr. Gerald Rosen, a sarcoma specialist. He and his NP Adrienne have been around a long time and are great at what they do. They are treating my tumor very aggressively. So far my chemo treatments have consisted of one 9 day and one 16 day, 24/7 ifosfamide drip. I am currently in the middle of the second chemo treatment as well as on day 3 of 25 days of radiation. I am happy that they are going after this thing aggressively and feel truly blessed to be in such capable hands!
Upon being diagnosed, I started keeping a daily blog about my progress and the different things I have faced in dealing with this disease. When I was starting out I couldn't find much of a day to day accounting of what it is like living with this and going through treatment, so I figured I'd go ahead and start doenting it!
I don't know if this can be of use to anyone on this board (as most of you have probably already lived it yourselves!) but I figured I would put the blog address out there in case it might be able to help anyone who is just starting out!
I hope this finds all of you doing well and avoiding mouth sores! Haha.
All the best.