Trial and Tribulations

I have spent the majority of this month adjusting to the life as a trial patient, which I should clarify is somewhat different than any other kind of patient in the sense that you are pioneering this new treatment. The powers that be in the medical field do not yet know the ‘ins and outs’ of these courses of drugs and it is your responsibility as the patient to serve as the vessel that helps them make these discoveries. I use the word vessel, because as a trial patient the goal is to better understand the treatment not the patient; the curative possibilities to the patient are the desired outcome but not the sole purpose of the trial study. For example, I am in a phase two safety study that is collecting data on the use of a two drug combination and at what dose toxicity might occur if at all. The phase one study yielded excellent results for both the drugs’ efficacy as well as the patient response, but more is needed before the drugs will be FDA approved in the treatment of Hodgkin’s Lymphoma. Thus the phase two study.

In some ways I am excited to be a pioneer, on the ground breaking level of new and exciting research in the field of immunotherapy cancer treatments. I am one of one hundred and eighty in the nation. Despite that I lack a love for science, I can’t help but totally geek out when thinking about how this study could potentially alter the future treatment of Hodgkin’s. However I need not be reminded of the fact that I now serve the same purpose as a lab ‘mouse’ (I just hate the word rat) or guinea pig. People agree to these trials or at least I did, because my alternatives were even less desirable options. This trial despite that it may lead to some potential adverse effects still offered a possibility for me to reach a state of complete remission. And CR is my end goal in the event that a cure is no longer a real option. So people who have exhausted other options hope for the opportunity to try clinical trials because in essence it provides possibility, new hope, or at the very least buys time. So alas a guinea pig I will be.

The tribulations of my trial status include spending countless hours in the car traveling to and from Boston in order to participate. The days of infusion are completely worth it because this new combination immunotherapy could be the treatment that actually kicks my Hodgkin’s ass; but the ten minute blood draws that have to be completed in Boston seem somewhat asinine. I understand that the drug companies that initiate these studies are very particular, but it is further proof that a trial study is about the drug and not the patient. I have come to terms with the travel and even the tedious draws despite that by the time the ninety three week trial has concluded I should no longer have blood cancer because they will have withdrawn it all for study purpose. The other tribulations so to speak are that I am completely unaware of any other participants in the trial at my hospital and I am a huge proponent of the ‘strength in numbers’ mentality where you can talk to others about side effects (which at this point has only been annoying itching thankfully), thoughts, experiences, etc. Thus, I rely on my online support community so I can talk to people doing similar trials at least. And lastly, huge cancer centers like this one lack the personal atmosphere I have come to expect and love about my local cancer center. I know everyone by name and they know mine. It is sort of like CHEERS only instead of getting the draft on tap I get an IV filled with a cytotoxic cocktail. I probably shouldn’t strike judgment just yet considering I have only had one infusion and several blood tests; but it just seemed easy to fade into the background when there are over hundred and twenty infusion stations in one building and countless employees that you rarely see twice. I’m hoping I’m wrong and will get to see familiar faces as the process continues, but I’ll guess I just have to wait and see.

Regardless of the logistical issues and thus far noted impersonal nature, I have to say that I am amazed by the research and studies offered and the cutting edge technology used. Farber was a pioneer when he started the hospital and it has certainly stayed true to his initial vision by constantly trying out new methodologies in the hopes of one day eradicating this awful and sadly ever more common disease. In addition to feeling like I get to be part of that pretty amazing history, I also get to take in Boston! And well who from Massachusetts doesn’t occasionally like to sing “I love that dirty water” when they pass by the Charles, or watch a game at the historic Fenway, window shop at Copley, and go on a Duck boat?


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