Preparing For January

Welcome back to the next Thriving Not Just Surviving blog post. Its been over 2 months since the last post. Life has been pretty crazy and I just haven’t had the time I thought I would have to dedicate to this. For the most part, it has been slow in terms of cancer updates but I will provide the most important updates below.

In my post in October I had mentioned that I was completely off the steroids. Unfortunately, after being off the steroids for about three weeks, the autoimmune symptoms returned in October. These were the same symptoms that had put me in the hospital at the end of August. I started taking the steroids immediately after the symptoms returned so there was no need to seek medical care. I have spent the last 8 weeks tapering down the dosage. I had my last dose last week and I have now been off for 1 week. I am hoping and praying that the autoimmune symptoms do not return again.

The autoimmune symptoms are not concerning by themselves because the steroids are very effective at regulating them. However, there is concern in the bigger picture of my future cancer treatment plan. If the symptoms keep returning and I continue taking steroids, it may impact my eligibility for future immune therapy treatment.

The only other piece of news is that I have made the decision to temporarily reduce my hours at work. My body has worn down significantly over the past 2 months. I think its due to a variety of factors including the steroids and still recovering from the hospitalization earlier in the fall as well as the fact that I still have active cancer in my body. After discussing it with my nurse, I felt that reducing my hours was the best way to improve my health and ensure that my body is ready for any future cancer treatment.

I had planned to develop a Facebook page for lung cancer awareness. That is still my plan, but it has been put on hold for now. I hope to have more energy to dedicate this sometime in the beginning of 2018. I do plan to start blogging more regularly again.

The next CT scan is scheduled for January 4^th. This will be the most significant scan to-date because it will the first time its been a full three months since the previous scan as well as not receiving any treatment since August. The reduced hours at work will hopefully allow for me to fully prepare for this and ensure I am as healthy as possible. 

Finished with Treatment…For Now

Welcome back to the next Thriving Not Just Surviving blog post. I am pleased to report that we had another great CT scan on Thursday, October 5.

As we were all hoping, the remaining cancer in my body did not spread or grow since stopping treatment last month. In fact, the only remaining tumor continued to shrink. The degree of shrinkage was very minor, but this is the first piece of evidence that shows my immune system has been trained to keep the cancer in check. My oncologist continues to have confidence in my outlook. He currently has patients with stage 4 lung cancer that continue to have their immune systems keep the cancer in check over 5 years after discontinuing immune therapy treatment.

The plan over the next few months is to be off treatment and monitor the remaining cancer. My oncologist wants to wait a full three months before the next CT scan. Three months seems like an eternity and a lot can happen in three months, but that is the current protocol for patients on immune therapy.

The good news is that life should return to normal as much as possible for the next three months. I am completely off steroids now and the steroid’s side effects should gradually diminish over time. I will continue to live a healthy lifestyle and continue with my regimen of holistic remedies including: vitamins, probiotics, essential oils, and cancer fighting foods.

I am thankful and happy with the amazing progress over the last several months. My cancer journey has been very different from most other lung cancer patients. My doctor was able to achieve amazing results without having to expose me to radiation or chemotherapy. I haven’t had to suffer through the normal chemotherapy side effects. I don’t even have a port.

All that being said, the journey is far from over. Most likely the cancer will come back at some point. My specific lung cancer, adenocarcinoma, varies in severity significantly across patients. My oncologist did confirm that I do have a very aggressive and fast moving form of adenocarcinoma. Typically, the worst forms cause the rapid build up of fluid in the heart and lungs, which is exactly what happed to me in February. However, it was encouraging to hear from my oncologist that there are clinical trials underway specifically for patients that had a powerful response to immune therapy, but had to be discontinued because of an autoimmune response. If the cancer comes back, this will most likely be our treatment plan. In 2017 there is no cure for stage 4 lung cancer, but there are plenty of options to keep it in check for an extended period of time. The advances that have been made over the last 5 years are moving in the direction of making lung cancer a chronic illness instead of a terminal illness.

Now that things are quieting down, I am planning to take lung cancer awareness and the story of my journey to the next level. Currently, this blog is the only channel I use to create awareness. I am planning to reactivate my Facebook profile and create a page dedicated to my story as well as to increase awareness for lung cancer in young nonsmoking patients. I am still in the planning phase, but I plan to have more narratives, photos, and videos to help illustrate my journey as well as use it to track advancements in lung cancer treatment. I will be sure to post a blog update when everything launches later this fall.

In the meantime, I have added an option on the right hand side of the blog page that allows readers to sign up for email updates. This feature will send subscribers an email every time there is a new blog post. I highly recommend subscribing to this feature so that you don’t have to keep visiting the blog to check if it’s been updated. On the right side of the page type your email in the field below “Follow By email”, click “submit”, and follow the instructions in the pop up box. This should make it more convenient to follow the blog.

I expect to take a few weeks off from blogging while I begin preparations for the Facebook page. Unless something unexpected happens, I expect the next blog post to occur when the Facebook page goes life within the next month. 

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.

Revisiting the Results and Looking Ahead

Welcome back to the next Thriving Not Just Surviving blog post. I would like to use this post to further review and discuss the results of the last CT scan.

It’s still sometimes difficult to realize how well everything is going. As I explained last week, no one could have predicted this degree of tumor shrinkage at such an early stage in the treatment plan.  

The most amazing part of the test results showed that only a single tumor in my right lung remained. While this is certainly great news, it’s worth noting that millions of cancer cells need to be present in order to be viewed in a CT scan. Therefore, there is a chance that there are small amounts of cancer still present in these “clean” areas. However, given the rate of tumor shrinkage, it is also likely that the remaining hidden cancer cells will eventually be eliminated over the coming weeks and months.

Despite the smashing success of many immunotherapy drugs, one of the primary critiques against using them is the lack of understanding regarding the massive discrepancies among patients’ responses. Some patients, like myself, experience aggressive responses from the immune system and see significant shrinkage quickly. Others experience a halt in cancer growth and spread, but do not see the elimination of cancer. While other patients see no positive response, despite their cancer exhibiting the specific tumor markers that make them eligible for a specific immunotherapy drug. As more immunotherapy drugs are developed it is everyone’s hope that researchers create methodologies that are much more effective in determining which patients will experience positive results with these types of treatments.

I am grateful and blessed that I am a patient that experiences positive outcomes with immunotherapy. However, my doctor informed me that there is no way to predict the duration of the positive response. The duration could be anywhere from a few months to forever. If the duration is short, the plan is to add an additional immunotherapy drug to my current treatment plan. My doctor is fairly confident that other immunotherapy drugs should be effective, based on my response with Keytruda.

There is a lot to be excited about in the coming years regarding lung cancer treatment. The overnight success of Keytruda and many other immunotherapy drugs have caught the attention of the medical industry. The next generation of immunotherapy drugs are already in the late phases of clinical trials, many of which are accessible at Siteman Cancer Center. Even more significantly, clinical trials are underway in Buffalo New York for a lung cancer vaccine which was imported from Cuba. There is a long road ahead in getting this this treatment approved, but the results experienced in Cuba show that it might be possible to turn stage four lung cancer from a terminal illness to a chronic illness.

I have the next round of treatment on Thursday, August 24 and I expect to have the next blog post published by Sunday, August 27. 

One Tumor Left

Welcome back to the next Thriving Not Just Surviving blog post which will review the CT scan on August 3. Before I dive into the details I want to briefly review the results of the last scan.

On June 1, we observed approximately 50% shrinkage throughout all tumors in my lungs, chest, and lymph nodes. In some areas tumors were completely gone. The remaining cancer included the main tumor in my right lung, several enlarged lymph nodes, and a few smaller tumors in my chest.

The CT scan on August 3 showed significant and amazing progress on the remaining cancer. I have summarized below the major points taken from the pathology report.

•    The main tumor in my right lung shrunk 35% compared to the size observed on June 1.
•     All lymph nodes are normal size and do not exhibit signs of disease.
•     All other tumors are completely gone with no evidence of disease.
•     There is no evidence that cancer has spread to any other organs.
•     The heart and lungs remain free of cancerous fluid.

As I’m sure you can deduce, the only cancer remaining is the tumor in my right lung. My immune system has pulverized the cancer from every angle and eradicated it from almost every place outside my right lung! My doctor now calls me the poster child for immunotherapy. Immunotherapy is far from a perfect cancer treatment, but there are a small percentage of patients that experience stellar results. I am one of those patients.

After the CT scan in June my doctor had mentioned that it might be best to add a clinical trial drug to my current regimen in hopes to enhance the response. As of today, I am ineligible for any clinical trials because there is not enough measurable disease left in my body!

Even with the amazing progress I’ve made in such a short period of time, I sometimes find it difficult to not take this for granted. Therefore, I think it’s worth discussing the initial and likely scenario we were faced with at the initial diagnosis.

•    When I was in the ICU for 5 days at the end of February, many of the symptoms I was experiencing are normally experienced by lung cancer patients in the final few weeks of life. These included pericardial and pleural effusion (significant fluid buildup in the heart and lungs). Fortunately, my body was able to recover and I was able to start treatment.
•     The genetic and molecular makeup of the cancer cells left us with only two treatment options: traditional chemotherapy or immunotherapy. My doctor estimated that there was a 30% chance that chemotherapy would provide a response and immunotherapy a response at 40%. It is worth noting that a response does not assume that shrinkage will occur, but at a minimum slow the progression of cancer. 
•     Contrary to popular opinion, after my own informal research and discussions with my doctor, I have found that age is not a strong predictor of success in stage 4 lung cancer patients. In fact, many young non-smoker lung cancer patients are at a disadvantage because their cancer is not detected until the disease is very advanced. We met a woman during treatment who had a 25 year old niece who passed away very quickly from lung cancer.   

I’m not revisiting these facts to be morbid, but to highlight the fact that I am not experiencing a normal or expected response. My great response is a direct result of many prayers, exceptional medical care, fighting spirit, and my overall good health. Moreover, there are patients that have these same advantages, but still don’t make it. I have much to be grateful for and there is still a long road ahead.

I will be continuing the current schedule of treatment every three weeks and undergoing scans every nine weeks. The biggest concern right now is not the cancer, but if I was to have an adverse reaction to the immunotherapy drug. Some patients using this drug have had their immune systems start attacking healthy tissue and organs. Although serious, there are drugs that can be given to remediate this issue and I likely could continue to receive treatment. However, it is important that I remain aware of any new side effects or symptoms.

I could keep writing, but it’s already a very long blog post so I will try to wrap this up. I do plan to start publishing blog posts more frequently (Expect the next blog post 8/13). In closing, Maureen and I continue to be amazed, humbled, and blessed by the outpouring of support. I never imagined that our lives could be enriched this much as we undergo a serious illness.