I am looking for opinions. My son, who is 18, just finished his 2nd lung surgery in Germany by Dr. Rolle. Dr. Rolle removed a total of 69 tumors - about 20 of them were undetectable on CT scan - Dr. Rolle vaporized them. The original tumor was in my son's hip and the recent MRI showed it was 'better than stable'. So my son has no measurable disease - which means that he is not eligible for treatment. I am working with a physician at the NIH who is going to try to get my son on a vaccine outside of a clinical trial. Does anybody know of vaccines that are FDA approved for sarcomas?
I want to share with all of you a conversation that I had with Dr. Rolle. First, Dr. Rolle has given us is hope. If he did not remove these tumors, my son would not survive. Even his oncologist at Duke was thrilled that we found Dr. Rolle. Dr. Rolle has been doing this surgery for over a decade and has it perfected. He believes that the best chance for survival once the disease has spread to the lungs is surgery. Dr. Rolle's long term survival numbers are impressive. He believes sarcoma patients need surgery and systemic therapy to improve survival.
Dr. Rolle's surgery is not FDA approved in the US and no one has been able to give me a reason as to why that is. His laser surgery is muscle sparing and does not leave his patients ' pulmonary invalids'. He expects my son to be at 90 to 95% lung function in 6 months. I want you to know about my son so that if you should learn that you or your loved one has multiple lung mets that there is another option that you can consider in addition to chemotherapy.
In the midst of this devesating diagnosis, may God give you peace. Twinmon