Getting Back on Track

Welcome back to the next Thriving Not Just Surviving blog post. I spent the last week in St. Louis recovering from my hospital stay and getting my routine back on track.

It’s been a very fruitful week and I am feeling my normal self again. I’ve returned to working out and have been able to gradually increase the intensity of my workouts.

The follow up appointment with the oncologist went well. He has started decreasing my daily dose of steroids with the intent of moving completely off steroids by the end of the month.  The plan for the next few weeks is to continue withholding treatment and undergo a CT scan at the beginning of October. This next scan will be huge because it will be the first scan in which we have stopped treatment. The hope is that the cancer has not grown or spread which would provide evidence that my immune system is keeping the cancer in check. The progress I’ve made over the past several months is promising, but it’s impossible to know for sure how the cancer will respond without undergoing regular treatment.

My oncologist has not ruled out a return to immune therapy, but right now my body needs to continue to heal and be free of steroids. Traditional chemotherapy and radiation could be options as well if the cancer returns, but my oncologist really wants to avoid these options.

I’m looking forward to hopefully having a few quiet weeks in Kansas City before the CT scan on October 5. Maureen and I continue to thank everyone for the prayers and support. 

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.

Working Through Complications

Welcome back to the next Thriving Not Just Surviving blog post. Unfortunately, I am writing this post from a hospital room at Barnes Jewish Hospital in St. Louis. I will use this post to summarize the results of the past few weeks and detail how I was admitted to the hospital.

A few weeks after having my August 3 infusion I began to experience severe headaches and nausea. I initially believed it was a stomach bug. However, after the symptoms did not subside after 4-5 days I reported them to my oncologist. There was much concern surrounding these symptoms as they can be a side effect of the lung cancer cells metastasizing to the brain. Other than traditional brain cancer, lung cancer is the most commonly known cancer to metastasize quickly to the brain. I received a full brain MRI the next day which fortunately came back clean. It would have been rare for the cancer to go to the brain considering that my immune system has eliminated the cancer in most areas of my body. However, the implications for a brain tumor could be devastating to my prognosis so it was beneficial to rule it out.  

Following the brain tumor scare, the headaches improved but the nausea and additional gastrointestinal symptoms developed. My oncologist prescribed several medications to control these symptoms. They worked for a few days and I was able to receive the eighth round of treatment on August 24. Unfortunately, the symptoms returned with increased severity in the following days. As a result, I was admitted to the hospital on Tuesday, August 29. Over the past few days I have been undergoing a variety of tests to determine the source of the symptoms. To-date, all the tests have returned negative results. I have been under observation to ensure that the symptoms do not cause extreme weight loss or dehydration.

I am scheduled to undergo a full colonoscopy on Tuesday afternoon. This should be the last test and the findings or lack of findings will determine our new approach. The new approach could be as simple as  using antibiotics to treat an infection that has embedded itself in my digestive system. Or it could be discontinuing Keytruda altogether and developing a completely new treatment plan. It’s impossible to predict the outcome at this point.

Despite these complications, the doctors are fairly certain that these symptoms are not from the cancer spreading in any way. To the best of everyone’s knowledge, I still have only 1 small tumor remaining in my right lung.

Maureen and I continue to appreciate the prayers and support as we have experienced a lot of uncertainty the past few weeks. In the beginning, I knew that there would be times like this in which complications would arise. It is my hope that we are on the verge of obtaining clarity and an updated path to move forward.