We woke up early this morning in Hull, MA in order to make my 8 AM appointment at Dana-Farber in Boston. I always have to make light of the situation to ease the tension: today it was the gown, at an earlier appointment it was the pain rating scale. I don’t even know how to make most of those faces??
My appointment with Dr. Andrew Wagner focused on potential medications that would ideally slow, stabilize, or even shrink the tumors that are evident throughout my entire right leg. This follow-up appointment did not yield any surprising break-throughs, but gave us an opportunity to talk more specifically about medications available, since excision and radiation are no longer options. I leave the details to Ryan, but as I understand it, my choices at Dana-Farber are a traditional chemotherapy, chemotherapy supplemented with enhancing drugs, or a clinical trial.
Chemotherapy – chemo has not shown much success in fighting Clear Cell Sarcoma. It also has significant toxicity resulting in the side effects that we are all so familiar with: nausea, fatigue, etc. Finally, it is administered at the hospital in a strict regiment requiring frequent visits. When chemo is combined with other enhancing drugs it has shown better results in some types of cancer, however, it is still not effective on CCS.
Clinical Trials – there are three different clinical trials that were suggested and currently open to enrollment at Dana-Farber. I won’t even get into the specific names or science behind them as it was extremely complex and difficult to follow. What it came down to for me was that one specific trial using a c-MET inhibitor called Crizotinib, has been used by other CCS patients and shown some success at stabilizing the disease. However, CCS is so rare that it is difficult to accurately quantify the results.
Today I decided to enroll in the Crizotnib clinical trial because it has shown the best results, has virtually no side effects, and is taken as a pill at home. I feel that this drug gives me the best chance against CCS and also allows me to continue traveling. However, it will require that I travel to Dana-Farber routinely so they can monitor the effectiveness of the drug. My only frustration is that the earliest I will be able to enroll and begin taking the drug is January, 3 2011, in approximately two weeks. I have already seen the tumors in my leg get progressively worse over the last two weeks and fear what two more will mean to the functioning of my leg. Although they help select the best drug for the patient, the focus of a clinical trial clearly seems to be on studying the drug. I am officially an experiment.
After my appointment we made our way back to Logan Airport and flew from Boston back to Orlando.