According to the March, 2014 issue of Personality and Social Psychology Bulletin by Angela Legg and Kate Sweeny, the way you deliver or receive news is important to how it affects your mood. This study came to the conclusion that people who ended on a good note felt better overall compared to those who received the good news followed by the bad news. So in attempt to leave everyone on a good note, I will model the delivery aspect based on the finding of this study.
My personality dictates that as a patient I need to be fully prepared for any conversation pertaining to my illness, which means that I thoroughly read all the research studies, investigate clinical trials, search for testimonials, and gather the information I need to have a fully informed conversation with my team of oncologists. Unfortunately, that also means that I am very aware of the statistical data stacked up against me when dealing with refractory Hodgkin’s patients and based on these numbers the five year survival rate is not good. However, I believe very little in numbers considering I was initially told I had the “good kind” of cancer that would easily be taken care of by the frontline treatment. So when I opted out of that majority things got a little more complicated. Then I got the two percent of people get this side effects of some of these treatments, which was just fitting. So honestly this data has little impact, but it is out there and does certainly weigh on my mind at times. Fortunately, advances in medicine have yielded great results and studies indicate the future for refractory patients is not as bleak as initially predicted. So new studies are being conducted but have not yet had the opportunity to be full longitudinal studies with data that contradicts the historical outcome for patients like me. I choose to believe that it will. Even when I am at my worst, which Steph and Josh can probably attest to, I still whole heartily believe this.
Sometimes in life good just isn’t good enough. So while radiation eradicated some of my cancer cells, the stubborn ones remaining make me ineligible for an autologous (using my own cells) stem cell transplant. I was not overly surprised by this news nor was I overly upset by it. Based on my conducted research many refractory patients who fail multiple treatment variables like I have, fail the auto transplant and need to pursue alternative treatment options after. In other words, my probability of failing this course of treatment was already high. So why put your body through that grueling experience unnecessarily only to find yourself in this position five months later? I like to think of it as skipping a step. Unfortunately many clinical trials require you to have failed this step in order to be eligible for their studies. Luckily, my Boston oncologist was able to find a loophole and reserve me a spot on one of the promising trials out at the moment. This trial involves Nivolumab (pd-1) and Ipilumamab. I personally think the names of these drugs should be made much more simple like cell killer and lymphominator, they would seem so much more intimidating. Pd-1 was initially created for melanoma patients and had noteworthy success, it was tried on relapsed and refractory Hodgkin’s patients and yielded an amazing response rate of 89%. Some involved in the study ended in complete remission, other had a partial response which allowed them to pursue other options like an allogenic or bone marrow transplant, and others at least had stable disease without progression. The hype surrounding these findings has generated a lot of talk in the cancer community and may just blow earlier statistical data out of the water. This trial is budgeted to last 93 weeks or a year and a half and would require me to go to Boston to receive an infusion every other week for that duration of time. I can opt out at any time and the side effects reported have been very mild and none considered high on the adverse effect scale. I will be able to work and live my life much like I have been throughout this process. My concerns lie in the step that follows or if one has to and that is uncertain at this time. The clinical trial has not been out long enough to determine whether or not it can lead to sustained complete remission, which would mean I would be closely monitored afterward and if disease reoccured I would more than likely have to have a bone marrow transplant. At the start of this trial I will be put on a national registry to see if a match will even be available, if at some point this becomes my only option. I would like to put off a transplant for as long as possible because doing one has many potential risks involving Graph Versus Host Disease and would also make me ineligible for future studies. So at this time I consider this a last resort. I have reserved a spot in this trial but am seeking a second opinion in New York city with Dr. O, the Wizard of Oz in the lymphoma world, just to ascertain that this is my best course of action. I am hoping to review the evidence with Z and make the best possible decision within the next few weeks. So while there is no light at the end of the tunnel anytime soon, I think I may at least be traveling in the right direction.
Radiation was most definitely a success. I definitely won Round 4 and fully stand by my previous statement that the reality is that this was absolutely a small victory for me! At this time I have only two lymph nodes with a slight uptake, meaning that I have minimal active disease and am mostly (98%) cancer free. I potentially could do nothing for a duration of time and never have any physical ramifications. I will not do that, but the point is that I could. This means that I have lots of time and opportunity to fully take advantage of any potential trials or experimental options that exist. I am in good health otherwise, as Z likes to remind me when I am in the mist of a category five hurricane due to information overload. He likes to remind me because I am just fine with the exception of these few stubborn cells and can go about my business as always. So yes I may have to deal with the heavy shit that is cancer and making decisions pertaining to it, but in all reality I can get out there and live my life as usual. So instead of having a treatment blitz, as Josh called the auto stem cell transplant, I get to continue on my scenic route. Spend some time in the city every other week and keep keeping on. Sometimes you just have to fight a battle more than once (or five battles) to win!