A Small Bump in the Road

Welcome back to the next Thriving Not Just Surviving blog post. I am happy to report that I was discharged from the hospital Friday, September 8 after an 11-consecutive day stay.

On Tuesday, September 5 I underwent a full colonoscopy as well as an upper endoscopy. The goal of these procedures was to find the source of my gastrointestinal symptoms. The results showed that I have significant inflammation in my small intestine. Since I’ve never had prior issues with my small intestine, my oncologist believes that I experienced an autoimmune response from my cancer treatment. In other words, my immune system started attacking the small intestine causing the inflammation.

As I have stated in previous posts, the primary concern for me with immunotherapy was for the immune system to start attacking something noncancerous. The interesting part is that most patients that experience this usually have the lungs attacked by the immune system, not their small intestine. According to my oncologist, the patients that have the most powerful responses are usually the patients that experience an autoimmune response. My response has been overwhelmingly powerful so it’s not shocking that this happened.

Currently, I have been put on steroids to reduce the inflammation of the small intestine and “rev down” my immune system. This should continue for the next few weeks. My oncologist said the likely path forward will be to discontinue treatment indefinitely and revert to a monitoring strategy. This may sound bad or disappointing, but keep in mind that my cancer is nearly gone. My doctor has had patients that received only 1-2 rounds of immunotherapy treatment and their immune systems have kept the cancer from growing for years. It is our hope that my immune system has been trained from the 8 rounds of Keytruda and can prevent the cancer from growing and spreading. I will continue to receive CT scans regularly to ensure we catch the cancer early if it starts to grow again. The primary and unavoidable concern is if the cancer comes back very quickly in multiple places. However, my oncologist reassured me that they have a full arsenal of cancer fighting weapons to combat the recurrence of cancer including: chemotherapy, radiation, proton therapy, immunotherapy, and clinical trials.

I have a follow up with my oncologist on Thursday and we will continue to discuss this new approach, but it’s likely that the final decision will depend on my physical condition. 11 days in the hospital and the gastrointestinal symptoms for the past month have taken a toll physically. I lost 16 pounds of weight over a two-week period. My goal over the next few weeks is to start regaining weight and strength. I usually bounce back quickly and I know I can do it again.

In light of everything mentioned so far, this week does represent a “small bump in the road.” We are deviating from the original plan of receiving immunotherapy for the full two years. However, there is an incredible opportunity. Instead of waiting two years to see if my immune system can keep the cancer in check, we are going to find out over the next few months. There is no way to determine the duration in which the immune system can keep the cancer in check, but my immune response during treatment is certainly promising. Furthermore, if the 1 tumor begins to increase in size we will blast it away with radiation, which would eliminate the remaining cancer from my body.

My body used the immunotherapy to the fullest extent. Most patients that receive this drug for the full two years never get close to experiencing the shrinkage I experienced in just 5 months. In fact, my oncologist is leading a research project on patient responses with this drug and he will be analyzing killer T cells from my immune system to identify characteristics that produced such a powerful response. The goal of this research is to better predict individual patient outcomes with immunotherapy.

I am ready to return to a normal routine again. This whole saga has been nearly a month and it's nice to begin enjoying food and feeling good again. I will stay in St. Louis for the next week for the follow up appointment with my oncologist, but I plan to return to Kansas City the following week. There will be much more information to come in the near future.