In the beginning of August I began a Phase II Clinical trial at Dana-Farber Cancer Institute in Boston. In June I found out that my other medication was no longer working at the current dose. My options were to increase the dose or explore other treatments. I didn’t want to increase the dose because I knew my body would not be able to handle it. In the beginning of July, I went to Dana-Farber to find out about the clinical trials they offered. I learned about different treatment options and eventually decided to participate in a Phase II clinical trial specifically targeted at Synovial Sarcoma. They have a whole floor just dedicated to sarcomas.
Most people in my age bracket are focusing on other things in life. Usually they are starting a new job, moving into a new home, getting married, and the list goes on in on. I, instead, was going to start a new treatment, in a new city, with a new team of doctors and nurses, and in a new hospital system. Talk about a loaded sentence. It wasn’t easy for me to make the decision but when I found out there were only 4 spots left in the trial I signed my name on that dotted line faster that anything.
You’re probably wondering what a Phase II clinical trial is and what it entails. Basically in a Phase II trial I am given the highest dose of the new drug to see how my body reacts to it. This dose is based on the results from the Phase I study. There are only about 40 people enrolled in this specific study. They are testing to see how effective the drug is against my specific cancer. If this drug ends up working and pushes through to be approved by the FDA you can thank me for being a test subject.
If you thought getting into an Ivy League college was hard, try getting into a clinical trial. Most colleges reject students because of a bad SAT score or not enough extra curricular activities. If you aren’t accepted into a clinical trial it's because of your genetic makeup. You aren't rejected because your teacher gave you a bad grade or your dog ate your homework.
Believe me when I tell you those spots go quickly too. When there are only 40 spots left for your rare cancer you have to act quickly. I had a 48-hour decision window. I signed the paperwork on a Friday and by the next Tuesday the trial was closed. I compared it to shopping at Best Buy on Black Friday. If you don’t get there early enough and act quickly your TV will be gone. Needless to say you don’t want to mess with us cancer patients when we are trying to get into a trial. We can turn into that crazy lady in line who’s guarding her TV. Simple rule is don’t mess with us. We too are racing against the clock in some instances.
Once you sign your paperwork, your spot is saved. The next step was completing a bunch of screening tests to make sure you were eligible for the trial. If you passed those tests, then you could begin the trial. I however kept pushing my start date so that I was able to go to HITS Saugerties with my barn for a week. As soon as we got back from the horse show and I got Joe squared away, we drove to Boston to complete my testing and started the trial.
Thankfully this trial is a pill. I take 4 pills twice a day. I have to keep a diary of when I take the medicine and it’s strange for me to take it with food. With my other medicine I had to wait to take it on an empty stomach, which meant 1 hour before or 2 hours after food. The drug also looks like the Sam’s Club Brand Ibuprofen that my mom buys. Don’t worry she hasn’t tried to take it……. yet.
In a nutshell my treatments have now taken me to Boston. Thankfully I love Boston. Both my sister and I went to school in New England and loved it here. I however chose to go to a school on the cliffs overlooking the ocean instead of one on the Charles. It’s funny to be back in Boston now for treatment. As we were walking around the city the other day I felt like I was back in college. I don’t think of my life before or during cancer. I think of it just as my life. I hate when people refer to there life as before, during, or after cancer. No need to dramatize it, just deal with it.
I am a private person and didn’t want to share this new treatment until I was accepted into the trial and started taking the new medication. We are in uncharted territory and are learning to just roll with it. We are still trying to get used to the new clinic and how it works.
I initially chose to start this blog to document the bizarre and funny things that have happened. Let me tell you, with a new treatment that means plenty of stories to share. I didn’t start writing to draw attention to myself or to gain sympathy. If you took one look at me, you would never guess my situation. I’ve had several people tell me things like “its great to see you out” or “you look amazing”. They clearly have no idea that I spend the majority of my time at the barn with Joe. When someone says that I look good I have started responding with “it doesn’t hurt to take a shower”.