February is a whirl wind month. It is the shortest month and encompasses a school vacation, so it generally goes by very quickly. In addition to its usual fast pace, I also had to sneak in a multitude of appointments for one thing or another, while I continued to labor over my decision whether or not to enroll in the clinical trial option offered to me.
As a Type A, I tend to be a planner, a researcher, a person who actually creates the pros and cons list rather than just says the words pros and cons in theory. So I spent some quality time with my good ole Macbook looking into the clinical trial, the perceived outcomes, and checking with my support group to see if anyone had already participated using this particular drug combination. I learn best from discussion and this process has been no different. After conducting my research I was still no closer to my decision and was thankful for the opportunity to get a second opinion with O’s office in New York City. So we hopped on the MetroNorth and went to the big city and I am so glad that I did.
At O’s Office, I met Dr, A who was very fashionably dressed (an important side note) and had a whole new outlook on my situation. She was very optimistic and explained in a unique cohort of Hodgkin’s Lymphoma patients that the disease may need to be looked at more like a chronic illness. In other words, it may be necessary to try a variety of treatment options for a duration and monitor to ensure that there is no progression. If progression occurs, introduce a new treatment and restart the process. So unfortunately, I may have to experiment with a lot of infusion therapies but on the upside if constantly monitored and altered, my disease should be kept minimal. This opinion was a whole new way of thinking for me, one that did not involve an immediate transplant or impending doom. It seemed somewhat more manageable. Dr. A’s office thought the clinical trial opportunity was a step in the right direction and had some similar options to offer. Unfortunately, my insurance does not cover out of network oncologists when they believe the same services can be provided in network. Thus it was a fleeting moment with Dr. A, but I will keep their office in mind in the future. I can always file an insurance grievance and hopefully get the out of network situation voided.
So I opted to go with the Ipiliimumab (pdl-1) and Nivolumab (pd-1) trial out of Boston, partly due to my insurance contraints and partly because I worried that I would regret not taking an opportunity such as this that is only offered to 180 people in the nation. Clinical trials are definitely a gamble, but one that just may be worth taking. Based on my preliminary research and the data coming in, immunological therapies such as these have an incredible response rate in some patients. I guess I’m just hoping to be one of them. Even if I’m not, there are still numerous combinations I haven’t tried, that I still can. This trial however does require a significant amount of screenings and time spent in Boston, which is somewhat frustrating to me because I still maintain my full time teaching position and a very active social life. But it seems that it is most intrusive in the first few cycles and evens out after that, so I can continue to do those things without a problem. In some ways it feels selfish to say that, but I think it is so important not to let cancer consume my life. I prefer the days where it is an after thought rather than at the forefront of my thoughts.
I have been given a new team of oncologists as part of the clinical trial study bringing my grand total of oncologists to 27. Perhaps a slight exaggeration but if I added my oncology nurses and thoracic surgeon, it comes pretty close. There is no ‘one size fits all’ oncologist or course of action for cancer, which is why you have to ‘try on’ so many and end up with a ‘number of styles’; some of which you would have picked out for yourself and others that were given to you. Next week, I get to meet my new oncologist and rumor has it, he is French. The French always did have a sense of style, let’s hope. While I may have close to 27 oncologists and oncology nurses (all of which I am thankful for), I have to admit I’d much prefer dresses (and dress season which will hopefully show up soon)!