Seizures

Welcome back to the next Thriving Not Just Surviving blog post. Its been another eventful week of doctor and hospital visits. 

 Up until a few weeks ago I didn't know what it was like to experience a seizure and I never gave much thought about epilepsy. Since Sunday, February 11, I've had 4 seizures with each one increasing in intensity. This past Tuesday I experienced another seizure during the night. I was taken to the emergency room the next morning and I experienced another seizure in the emergency room. I have no memories from these seizures, but I experience intense pain from the convulsions when I wake up. In fact  one of the seizures was so intense that I actually partially fractured my right shoulder.

I was admitted to neurology center at Barnes Jewish Hospital on Tuesday evening to undergo testing. I was seen by several different neurologists and underwent an Electroencephalography (EEG). This test monitors the electrical activity of the brain. The test failed to reveal anything abnormal. I also had my spinal cord tapped for fluid. The first round of tests completed on the fluid revealed nothing significant, but we are still waiting for some of the results.

Despite all the testing and checkups from multiple neurologist,s we were not able to identify the cause. I continue to exhibit epileptic symptoms with no identified cause. The good news is that I respond positively to anti-seizure medicine. Fortunately, epilepsy is treatable and most patients are able to keep seizures under control by taking a daily medication. So far the medication appears to be working. However, my oncologist is still wanting to learn more about this because there is no reason for me to be having seizures.

I was discharged from the hospital on Friday afternoon and I am spending the weekend recovering from a grueling hospital stay. During my stay I was seen by many different doctors in an attempt to diagnose my seizures. Thus far in the cancer journey this has been the most painful part. I have no memory of experiencing the seizures, but the pain is intense when I wake up after the seizure has passed. I experienced more pain during the past two weeks than during any other part of the lung cancer journey. I am very thankful for high strength narcotics.

The cancer journey was bound to get tougher. I just never expected that epilepsy would play a role. This week I resume physical therapy to continue recovering from the seizures. I'm looking forward to putting the pain behind me as much as possible. 

A Rough Week

Welcome back to the next Thriving Not Just Surviving blog post. I initially planned for a blog post this week that discussed how no news was good news. However, the events of the past few days have dramatically changed that plan.

On Sunday evening as I was falling asleep in bed I experienced two fairly severe seizures. Each one was about a minute in length and a minute apart. The only recollection I have is being unloaded from an ambulance at the emergency room. A CT scan of my brain later in the night revealed nothing imminently wrong. After I was discharged a few hours later Maureen and I departed for St. Louis to be in closer proximity to my cancer medical team.

On Monday I underwent a full brain MRI to check for brain tumors. Fortunately, the MRI came back clean. This is very good news. With the exception of actual brain cancer, lung cancer is the type of cancer that most often spreads to the brain. It’s not uncommon for lung cancer patients to have numerous tumors throughout their brain once they start exhibiting the common symptoms of brain tumors. Seizures are one of those symptoms.

The bad news is that we don’t know the cause of the seizures. According to the neurologist we visited with, 60% of people that experience a seizure never have them again. I hope that I’m part of the 60%. However, I am restricted from operating a motor vehicle for at least 6 months. This is a precautionary measure for my safety and the safety of other drivers. This piece of news was very frustrating, but I am thankful that I should still be able to live an otherwise active life.

Muscle pain is the only residual effect from the seizures. I saw an orthopedic surgeon on Wednesday and he x-rayed my back to check for fractures. The x-ray came back clean, but he prescribed several rounds of physical therapy to manage the pain and regain my range of motion.

Obviously this has been a tough week. Over the last few weeks I felt that I had put the lung cancer in the rear-view mirror; at least for the next few months. Now I have to manage lung cancer AND the potential of future seizures. As frustrating as the seizures are, I’m confident that I can put this behind me as well. I’ve beat back terminal lung cancer over the past year which was significantly more serious than an episode of seizures.

Over the next few weeks I will be in St. Louis to complete my physical therapy and for follow up appointments with various doctors. I can’t overstate the gratitude that Maureen and I have from the outpouring of prayers and support. 

Another Good Scan

Welcome back to the next Thriving Not Just Surviving blog post. On Thursday I underwent the scheduled CT scan and visited with my thoracic oncologist.

I am pleased to report that for the most part it was another great scan. The only remaining tumor was consistent in size from the scan in October. Since treatment had been discontinued from the end of August we were not expecting the tumor to shrink again; but we were hoping that it would not increase in size either. So, this is good news and further evidence that my immune system is continuing to keep the cancer under control.

The one area of concern is a new "spot" that appeared next to the primary tumor in the middle lobe of my right lung. My oncologist said that it’s probably not a progression of cancer, due to the primary tumor remaining the same size. Its most likely an infection in the lung. An infection would be consistent with the symptoms I’ve experienced the past month including increased fatigue and achiness. It’s likely that I acquired this infection from a weakened immune system from the steroids, and its taking longer than normal to heal. Despite the likely scenario of an infection, my oncologist is expediting the next CT scan. The next scan will be in two months instead of three. If the new spot is still present in the next scan, then it’s likely a progression of the cancer.

The other good news is that I continue to be free of autoimmune symptoms after discontinuing steroids 4 weeks ago. Hopefully I’m done with steroids forever and I my immune system can continue to recover.

It feels great to have this scan completed. It was mentally difficult to go a full three months in-between scans. As a cancer patient, there are always thoughts and fears of the cancer rapidly progressing. Fortunately, the immunotherapy continues to work and hopefully will keep the cancer in check for the foreseeable future.

It can’t be overstated enough how well I have benefitted from immunotherapy. There was a 30-40% chance that it would work, but no one anticipated success to this degree. The big unanswered question is “How long will it work?”. With every passing month new drugs are being developed and its my hope that when I do have to undergo treatment again that the available drugs will be even closer to making lung cancer a chronic condition instead of a terminal one.

Over the next few months I am going to have a renewed focus on eating healthy, exercising moderately, and resting. It is vitally important that the potential lung infection heals completely.

In March 2017 I never would have expected to be in such good condition. There were times when I wasn’t sure I was going to see another Christmas. However, world class medical care, prayers, and support have gotten me to where I am today. Maureen and I have much to be thankful for.

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.