Preparing for the Next Big Milestone

Welcome back to the next Thriving Not Just Surviving blog post. I took a 6-week break from posting, primarily due to no major news following the amazing CT scan at the beginning of June. However, I am now ready and refreshed to start posting regularly again (probably every three weeks).

I received round 6 of treatment last Thursday, July 13. I continue to feel good and exhibit signs of further progress in my fight. The enlarged lymph node on my neck that was visibly smaller at the beginning of June is now completely gone. I can no longer feel it and my doctor was unable to locate it at the last appointment. This is a positive sign that further shrinkage is occurring since the CT scan. Furthermore, twinges of pain that I’ve experienced since the diagnosis when I move in a specific way have significantly decreased, or in some cases, stopped completely.

My doctor’s confidence in my long-term future has also improved. During round 5 of treatment at the end of June he stated that I am “off the bell-curve” in terms of stage 4 lung cancer survivorship percentages. The bell curve that he is referring to is the bleak outlook that many stage 4 lung cancer patients (including me) are faced with at initial diagnosis. I won’t get into specific percentages, but most patients do not live more than 1-2 years and almost no one makes it past 5 years. Its impossible to know how much my long-term outlook differs from this bell curve, but as long as I continue to respond to treatment there is no limit to my long-term future. It’s rare, but patients have beaten stage 4 lung cancer. It’s encouraging to know that my progress continues to make this a feasible outcome.

Another piece of encouraging news is my future treatment plan. Currently, my doctor believes that I won’t be needing to undergo traditional chemotherapy. If Keytruda stops working for me, the fallback plan is to add additional immunotherapy drugs to combat the changing molecular structure of the cancer. According to my doctor, they have over 40 other immunotherapy drugs that can be combined with Keytruda that can be effective against my cancer if it evolves into something that circumvents treatment. The long-term plan is to continue to take Keytruda and any other immunotherapy for 2 years. It is believed that this is the amount of time it will take to fully train the immune system to recognize and fight the cancer.  Following the two-year window is the great unknown. It’s impossible to estimate the long-term response of immunotherapy drugs. In fact, we are already partially into the great unknown. According to my doctor, they have not yet seen a patient as young as me, with this aggressive of a lung cancer, that has responded so powerfully and positively.

The next big milestone is August 3; the date of the next CT scan. It is an understatement to say that this is paramount. The continued positive progress made since the last CT scan present us with the potential to see tremendous results. During the last scan over 50% shrinkage was observed. If we see anything close to this, there won’t be much cancer left in my body. I do think it is extremely unlikely that the cancer is gone completely, but any further progress since the last scan will be positive. Over the next few weeks I will continue to work out as much as possible, eat healthy, and rest in preparation for the next scan. As expected, fatigue continues to be an increasing side effect and I’ve had to get creative in managing an active lifestyle while getting enough rest.

Thanks again for the prayers and support! I expect to have the next blog post published following the CT scan on August 3. 

A Magnificent Response

As the title of this post suggests, it’s been a great past few days. On Thursday, June 1 I underwent a CT scan and visited with the doctor to review the results.

I am ecstatic to report that the results were nothing short of amazing. Our doctor said that this was the best CT scan after only 3 rounds of treatment he has ever seen. Tumor shrinkage of over 50% was observed throughout the majority of tumors. This degree of shrinkage is rarely seen this early in the treatment schedule. I have summarized some of the details provided from the CT scan pathology report.  

•     The 3.4 centimeter tumor in my right lung has now been reduced by approximately 50%.
•     At initial diagnosis many of the lymph nodes throughout my chest were significantly enlarged Many of them now normal sized and the ones that are still enlarged are significantly smaller.
•     My heart has reduced in size by 2 centimeters. At initial diagnosis my heart was enlarged from swelling which can be attributed to the fluid and the close proximity of tumors. The heart returning to normal size shows that my body is recovering from the damage left by the aggressive cancer.
•     Numerous tumors throughout other parts of the chest and lung were either smaller or gone.
•     There is no evidence of the cancer spreading to any other parts of my body.

Going into the test I felt confident that the results were going to be positive, but I really wasn’t sure how good. My doctor was prepared to see the tumors increase in size as a result of the immune response. No one expected the immune response to be this powerful this early in treatment. My doctor said that it is likely the tumors are even smaller than what the CT scan displayed, primarily due to the T cells attached to the tumors. Additionally, when there is a response this quickly and dramatic, it is possible that some of the tumors showing up are partially comprised of dead cancer cell tissue.

There will be no change in my treatment plan. I received the fourth round of treatment after the appointment on Thursday. I will be undergoing another CT scan in another 9 weeks after I have completed the 6th round of treatment. However, I do plan to make some minor lifestyle changes to compensate for the increased fatigue I’ve been experiencing. Since my immune system has been performing at an insane level to shrink the tumors, additional fatigue is to be expected. This is a side effect I will gladly accept.

Since my cancer is stage 4, it is not medically possible to be “cured.” However, it is possible to have a complete response, meaning that the cancer goes away completely and tests show no evidence of disease. If that happens, which I am certainly praying and hoping for, the next milestone would be the duration of the response. The response in which cancer does not return could be anywhere from a few months to a permanent response in which the cancer never returns. It is very rare for someone with stage 4 lung cancer to have a permanent response. However, immunotherapy drugs are starting to lengthen the responses because the drugs help train the immune system to recognize and fight cancer cells even after treatment stops. My doctor said that there isn’t enough research with Keytruda to accurately estimate a response time, but having a dramatic and quick response is very encouraging.

Not only is treatment working, but the prayers and support provided by everyone is playing a significant role. I cannot thank everyone enough. I keep saying that everything is going as good as I could possibly expect; and I pray that it continues. Despite the progress made, I still have a long way to go, but Maureen and I have renewed confidence in winning this fight.

I expect to publish 1-2 blog posts over the next 9 weeks leading up to the next CT scan. 

Remaining Cautiously Optimistic

Welcome back to the next blog post. The last few weeks have been fairly uneventful, which is a very good sign.

Last Friday I received my third round of treatment and visited with the oncologist. The oncologist is very impressed and encouraged that my physical condition continues to not only be great, but also improve as I’ve undergone the early stages of treatment. My body continues to exhibit the signs that indicate that treatment is working. I will undergo a CT scan on June 1 which will give us a better indication on my progress.

The oncologist has instructed us to keep a few things in mind when analyzing the results of the CT scan. I will do my best to summarize these points because my situation is quite different from a typical cancer patient receiving traditional treatment.

Since I am taking Keytruda, a type of immunotherapy, there are certain factors that can impact the results of the CT scan. By their very nature, immunotherapy drugs stimulate the immune system to attack the fast growing cancer cells. During this process the immune system will start to rapidly create immune cells (killer T cells) which will attack the cancer cells by attaching themselves to the tumors. The hope is that there are significant amounts of T cells actively fighting the cancer during treatment. However, when the CT scan is performed, there is a good chance that the increased numbers of T cells may create the appearance that the tumors have grown and in some cases spread. This can be alarming to the patient or someone who does not understand how immunotherapy treatment works.

Keeping this in mind, my doctor informed me that my overall health and physical condition will be a driving factor in the decision to change or continue treatment. If I continue to feel great and progress, it is likely that the treatment is working regardless of how the CT scan appears.

Currently, this is very promising as I have increased the intensity of my work outs and continue to live a normal life as much as possible. Most of the time I feel no pain from the cancer and fatigue is the only constant reminder that I have this disease. 

I have more information regarding the long term “best case” scenario for my treatment, but I am going to hold off until the CT scan and I have another discussion with my oncologist on our next steps. In the meantime I am praying that I continue to feel healthy and that whatever the CT scan shows in June that it indicates a powerful and successful response from my immune system.

Once again Maureen and I are grateful to everyone for the ongoing prayers and support. We are thankful that everything continues to work out for us in all aspects of our lives during this fight.

Building Upon Positive Developments

Welcome back to the next blog post. It’s been a while since the last posting so I’m providing an update covering the past few weeks.

As stated in a previous post, I returned to Kansas City following the first round of treatment. It was great being back in the office at work and having the opportunity to interact with more people on a daily basis. I returned to St. Louis for the second round of treatment on April 20. The second round went well and my doctor was very encouraged that side effects and pain have been minimal. This past week I remained in St. Louis for another echocardiogram of my heart and follow up appointment with the cardiologist. The echocardiogram checked for fluid build-up. The results of the test were outstanding as my heart continues to be free of fluid. You might remember from an earlier post that the lack of fluid in heart and lungs is a positive development regarding the treatment of cancer. It could mean that treatment is working; however, I won’t have a more definitive answer about the treatment’s effectiveness until I undergo tests at the end of May. Cancer treatment can be unpredictable and I’m not assuming anything. Maureen and I are remaining cautiously optimistic.

Over the past few weeks my physical condition has continued to improve. In addition to the lack of pain, my energy level has increased and I have even started to work out in a limited capacity. Four to five times a week I do a brisk walk for 45-60 minutes. This past week I have incorporated a jog into that walk for about 10 minutes, and I finish with push-ups and ab exercises. The exercise has helped both mentally and physically. My goal is to become the best in-shape stage 4 lung cancer patient ever.

Reflecting over the past 2 months it’s astounding to see the progress I’ve made. It started with a trip to the Emergency Room and nearly experiencing Cardiac Tamponade from the fluid in my heart. I then was admitted into the Intensive Care Unit for 4 days and diagnosed with stage 4 lung cancer. I returned to the Emergency Room a second time to have fluid drained from my lungs. Treatment is now underway and I’m feeling great. I am providing this recap to highlight the contrast in my condition from the initial diagnosis to present day.  The prayers and support that Maureen and I have received have certainly played a huge role in this recovery. 

The next two weeks should be fairly routine. The third round of treatment is scheduled for Friday, May 12. Following the third round will be the most significant milestone to-date; in which I will be re-scanned to determine the treatment's (Keytruda) effectiveness. Stay tuned for more updates. I expect to have another post following the third round of treatment (May 12). 

A Return To Kansas City

It’s been an encouraging past few days. With the exception of fatigue, side effects continue to be minimal from last week’s treatment. On Thursday I had a chest x-ray and an appointment with my pulmonologist. The x-ray showed that my lungs had minimal fluid buildup since the left lung was drained three weeks ago. This is a great sign because now we can focus 100% on the cancer as long as the fluid remains under control. As long as I have cancer there is always the potential for fluid to accumulate in the heart and lungs; however, once the cancer begins to shrink, any fluid should dissipate.

Since I continue to feel good and don’t have any upcoming doctor appointments, I have returned to Kansas City. It’s certainly great to be back and I’m looking forward to working in the office for at least a few days this week.

My next round of Keytruda (immunotherapy treatment) is scheduled for Thursday, April 20 and will continue to be administered every three weeks. Following the third infusion I will undergo a battery of tests to determine if the drug is working. This will be a significant milestone. If it works, we will probably continue with the current plan and there will be time and flexibility in my favor. At this point I’m not thinking about the scenario in which it doesn’t work. I’m going to leave that to my medical team. Fortunately, along the way, there will be minor signs that can provide some guidance on the effectiveness of my treatment. As stated previously, if my lungs and heart continue to be free of fluid that could be a sign that treatment is working. Additionally, if I continue to feel good and have minimal pain, that will also be encouraging.

Now that my life and health has stabilized to some extent I don’t expect to have as much news every week. Therefore, I expect that the blog will be updated less frequently. For now I expect to have a new blog post uploaded at the end of April following the second round of treatment and an appointment with the cardiologist. If something significant occurs I will definitely post an update as soon as possible, but hopefully things will be stable for the next few weeks.

My best course of action is to remain positive, maintain a healthy lifestyle, get plenty of rest, and pray. Maureen and I continue to feel the impact of the support and prayers that everyone has provided. I have come a long way since I was taken to the emergency room in February. Part of it is due to my body’s willingness to fight and much of it is from the prayers and support.

The Fight Has Begun

Another eventful week is in the books. I am excited to announce that I received my first round of treatment Friday morning. This was a week earlier than expected, but my oncologist finalized the treatment plan during the week and wanted to go ahead and begin treatment immediately.

Unfortunately the final test results continued to show that my cancer did not possess any of the biomarkers that could be treated with targeted therapy. As a result, this limits the amount of treatment options available.

However, I am receiving a newly approved immunotherapy treatment called Keytruda. My test results showed that my cancer has high levels of Programmed Death – ligand 1 (PD-L1). PD-L1 suppresses the immune system and masks the cancer from detection, resulting in the cancer’s powerful ability to grow and spread. The immunotherapy is designed to expose the cancer cells and activate the immune system to fight and hopefully eliminate it. This marks a stark contrast to chemotherapy and many other forms of treatment, which typically involve chemicals and radiation to kill any fast growing cells. Fortunately, this means that immunotherapy side effects are less severe and will keep me eligible for new treatments or clinical trials that are developed in the future.

It took longer than anticipated to finalize the treatment plan, but the decision was made based on the culmination of a variety of tests including: CT scans, PET scans, brain MRI, lymph node biopsy, echocardiograms, blood tests, and fluid tested from my heart and lungs. Additionally, my oncologist sought feedback from a board of lung cancer specialists who unanimously agreed that immunotherapy was best for frontline treatment.

This treatment is not necessarily considered curative, but everyone responds differently to cancer treatment. There is minimal research on the effectiveness of this treatment for young non-smokers with advanced stage 4 cancer. It’s possible that this drug will not generate the required results or it could work magnificently. There have been many cases in which people have had prolonged positive responses to Keytruda. My oncologist is estimating that there is a 40% chance that the cancer will respond positively. I have faith that the prayers and support can bridge the gap of uncertainty and result in a success.

I’m excited for this treatment because it relies on my body to fight and not poisonous drugs to kill any rapidly growing cells. My body is ready to fight. Since my immune system is my main weapon, I have revamped my diet in an effort to rev up and supercharge my immune system. Some of these changes include: increasing my intake of dark green leaves (spinach, collard greens, and kale), other fruits and vegetables, herbal remedies, and vitamin supplements. Anything that I can do in addition to the treatment is going to help

Overall, the first infusion of the drug was a positive experience. Keytruda is given intravenously and takes about 30 minutes. This is significantly less compared to traditional chemotherapy which can take up to 8 hours for an infusion. At the time of publication of this blog post side effects have been minimal, resulting in only fatigue.

It was very sobering observing the other cancer patients receiving their treatment. It is amazing to see the strength of so many others that are battling cancer. Despite having stage 4 of the deadliest form of cancer, I certainly recognize that there are many in worse situations. I have plenty to be thankful for and I thank God for it.

Thank you once again for the prayers and support. I feel the impact of it every day. Despite my current situation, this has been one of the least stressful and most peaceful times in my life and I know that is not by coincidence. It is certain to get treacherous as I progress through treatment, but I have all the ammunition necessary to be successful. 

A Test In Patience

Welcome to week 4 of Thriving Not Surviving. Time continues to fly by since the initial diagnosis. It feels like I’ve lived with the cancer diagnosis for much longer than a few weeks.

This week was expected to be significant, but turned out fairly routine. We were scheduled to meet with our oncologist on Friday to determine a treatment plan. However, our oncologist wants to run additional tests from the initial biopsy, so our appointment has been postponed until this upcoming week. Apparently the initial biopsy results came back negative regarding the cancer biomarkers that would allow for targeted therapy. This is unfortunate, but our oncologist still believes that there is the potential for a biomarker and therefore the tests will be re-performed. We are also waiting to see if I am eligible for a clinical trial which includes a new type of cancer treatment for stage 4 lung cancer. We are still praying and hoping that I test positive for one of the cancer biomarkers as well as be eligible for the clinical trial.

My medical team continues to expand. In addition to the oncologist, we now have added a cardiologist and pulmonologist to my treatment team. Since the cancer in my lungs is advanced, there is the potential for complications with the heart and lungs.  I am very thankful that I have access to some of the best medical specialists around.

Patience is the hardest part of life right now. It’s extremely hard to wait for treatment when I know that I have an advanced form of cancer. From what I’ve heard from other cancer patients, the initial wait for treatment can sometimes be long and mentally grueling. However, it is very important to select the right type of treatment for my specific diagnosis.

It felt good to log a full five day work week; the first full week of work since February. Since I’ve been in St. Louis I’ve been working remotely from my parents’ house. The routine certainly helps and the feeling of productivity is empowering. I’m looking forward to maintaining a good working routine and interacting with coworkers and management as much as possible.

Thank you again for the continued prayers and support. Knowing that Maureen and I have an amazing support system gives me strength and has made the past few weeks easier. We will continue to keep you updated and let you know if there is anything you can do. Already you have done an incredible job with your prayers and well wishes.