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. 

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. 

Still Awaiting Many Answers

As anticipated, this past week was much more eventful than the previous week. On Tuesday the KU Oncologist gave us the preliminary test results from the PET scan. I have a 3.4 centimeter tumor in my right lung, an enlarged lymph node on the right side of my neck, several more lymph nodes closer to the heart, and the area around the heart is cancerous. It was also confirmed as stage 4 Adenocarcinoma, a type of non-small lung cancer. Obviously these are not great results, but they could have been much worse and the cancer could have spread to other organs. KU did recommend an immunotherapy treatment, but we have made the decision to undergo treatment through Washington University (Siteman Cancer).

On Thursday we had appointment with our Washington University Lung Cancer Oncologist. After only a few minutes into the consultation Maureen and I knew that this was going to be our best option. Washington University has an entire team of Oncologists, Thoracic Surgeons, Pulmonologists, and researchers dedicated to Lung Cancer. If you are interested in additional information, I have provided a link to their lung cancer website. I truly believe that this is going to be my best chance of success. Additionally, it has been refreshing to be with my immediate family once again. You don’t realize the strength and courage that can be gained from being with family; especially when you have lived out of town for the past 6 years.

I will be in St. Louis for the next week for several other appointments and hopefully by Friday we will have the information required to decide on a treatment plan. At this point I’m unsure how my time will be split between St. Louis and Kansas City.

We are still awaiting the results of the Biopsy I had last Friday so our Oncologist is holding off on determining a treatment plan. We are hoping and praying that the Biopsy shows one of the biomarkers that would make me eligible for targeted therapy. This treatment is typically given in pill form and is programmed specifically for the type of cancer mutation. Many times this has better results than Chemotherapy and does not include the harsh side effects.

Given that I am a nonsmoker, in terrific shape, and have no family history of lung cancer it is impossible to determine the cause. Even more perplexing is that I’m only 28 years old. Our Oncologist put it best in saying that I basically “got struck by lightning”. These cases simply do not happen often.  The astonishing reality is that it is likely that I have had lung cancer for the past 3-4 years. It boggles the mind to think all of the things that I have accomplished during this time.

On Friday morning I had started to have pain in my left lung and was taken to the emergency room. After running a battery of tests the doctors determined that the pain was coming from a buildup of fluid in the left lung. I had 650 cc of fluid removed later in the day. The fluid buildup is from the lung cancer and until the cancer responds to treatment, there is always the risk for the fluid to return.

With the information gained this week I feel like a boxer in a fight with cancer. Unfortunately for the past few years I have been blindfolded and have had my hands tied. Not until I start treatment will this be a fair fight. However, I am very confident that my body will respond positively to whatever treatment is administered. I have already started to prepare emotionally, physically, spiritually, and mentally for this fight.

The support from everyone in my life will help in the fight as well. Maureen and I continue to be humbled and amazed by the support from everyone in our lives. I am not going to attempt to list everyone out for fear of leaving someone out, but you are all amazing. 

More Tests and More Questions

Fortunately, this last week was not nearly as eventful as the previous week. I have continued to settle back into daily life and into processing the news from the week before. On Thursday and Friday I underwent a PET scan and Biopsy. The results of these tests will hopefully be known sometime in the next week.

At this point we don’t have many more answers. However, after further discussions with doctors, it is likely that I have stage 4 Adenocarcinoma which is a type of Non-Small Cell Lung Cancer. The test results will give us much more information on this next week. Fortunately, I received a CT scan of my head when I initially entered the emergency room and that test showed that the cancer had not spread to the brain.

The most significant news of the week is that our KU Oncologist is referring us to the Siteman Cancer Center in St. Louis. This is a world renowned center affiliated with Barnes Jewish Hospital and Washington University School of Medicine. They have significant resources dedicated to lung cancer and our KU Oncologist thought it would be best for them to diagnose me. Maureen and I will be traveling to St. Louis on Wednesday, March 15 for a consultation on Thursday.  As many of you are aware, I was born and raised in St. Louis so this works out perfectly with being able to stay with family.

On another positive note, I was able to work remotely on Thursday and Friday. It was refreshing to be productive and focus on something else. I expect to return to work in a more expanded capacity this week in-between doctors’ appointments.

The ongoing support from everyone has been humbling and amazing. St. Therese (our parish) has done a phenomenal job in providing meals for Maureen and I. Additionally; the support from friends, coworkers, and other cancer survivors has been incredible. The next big milestone of this journey will be viewing the test results. These results will directly impact my treatment plan. Please continue to pray that the test results will allow for an effective treatment plan resulting in a full cure.  

For all the non-Catholics out there, Catholics will pray through those who have led exemplary lives and have gone before us (as in Rev 5:8 “the prayers of God’s people"). We are not putting them above God, but recognizing the life of virtue they led that we all aspire to as Christians as well as asking for their prayers, as we ask of yours (1 Tim 2: 1-5).

For all of the Catholics reading this, we have a very special prayer intercessor we would like you to pray through; Venerable Father Solanus Casey.  Venerable Solanus Casey was born and raised in the US. He was a very humble man who always had an “Attitude of Gratitude.” He always kept close, his faith and trust in God and he would always console and encourage anyone who came to him. He had a connection with the well-known Benedict Groschel, whom Maureen and I have both met. In order for Venerable Sonalus Casey to be declared a Saint by the Catholic Church, he needs two miracles attributed to him. We figured that if we are praying for a miracle and a miracle can help him and his story be more known, if God wills it, let it be! Please join us in praying:

Prayer for the Beatification of Venerable Solanus Casey

O God, I adore You, I give myself to You.

May I be the person You want me to be,

And may Your will be done in my life today.

I thank You for the gifts You gave to Father Solanus

If it is Your Will, bless us with the beatification of

Venerable Solanus so that others may imitate

And carry on his love for all the poor and suffering of our world.

As he joyfully accepted Your divine plans,

I ask You, according to Your will,

To hear my prayer for Greg Fiudo, that he may be fully and completely healed of Cancer,

Through Jesus Christ our Lord. Amen. 

The Initial Diagnosis

Welcome to the first blog posting of Thriving Not Surviving which will serve as a way to keep everyone updated. To be completely honest, I am typically a very private person and not used to sharing intimate details. However, as I continue to process the news over the past week I have realized the need for everyone’s prayers and support. Since this is my first time writing a blog I’m not completely sure how often it will be updated, but I will try for at least once a week.

To start off, I would like to recap the events of the past week. On Sunday, February 26 I was taken to the emergency room after having pneumonia like symptoms, chest pains, shortness of breath, and passing out in the bathroom. They ran a variety of tests and found what appeared to be pneumonia enveloping my entire chest. Additionally, there was a significant amount of fluid around the heart. They scheduled an emergency procedure to remove the fluid from around my heart. I also received antibiotics for the pneumonia on Monday and Tuesday. My condition began to consistently improve each day and it appeared that I had a very severe case of pneumonia.

On Thursday, March 2 they ran tests on the fluid that was around my heart and found that the cells in the fluid are typically found with lung cancer. Later that day Maureen and I received the news that it was lung cancer. On Friday we followed up with an Oncologist at KU and he confirmed that it is Stage 4 Non-small cell lung cancer. Obviously this was what we did not want to hear, but it is the reality of the situation. We are scheduled to have a PET Scan and biopsy later this week to identify the extent of the cancer and treatment options.

To say that this has been a tough week would be an understatement. I have continued to ask myself over and over again how this happened. Less than two weeks ago I was working out 5 times a week with ease. There is the saying that, “God will never give you anything that you can’t handle.” As I think about the battle ahead I know that I can handle whatever God has in store for me. I am far from a perfect person and I have fallen many times; however, my Catholic faith is something that I take very seriously and it constantly influences my thoughts, words, and actions. My faith is going to help get me through this.

In addition to my faith, the amazing support of family and friends from all aspects of my life will get me through this. I am writing this blog for you. The outpouring at our Church has been overwhelming. Over the past 5 years I have had the opportunity to work with some of the best people in the world at the Federal Reserve Bank of Kansas City. I do not consider you coworkers, but also friends. Your support has been incredible as well.

At this point Maureen and I are still determining what are support needs will be, but we will let you know. Right now prayers are the biggest ammunition that we have in this battle. I’m sure we have missed some people in our initial release of this information so please provide the link to this blog to anyone you think might want to know. It will also be posted to Maureen’s Facebook page.