A Long Awaited Update

Welcome to the next Thriving Not Just Surviving blog post. This post is written by Maureen, it has been a while so I will provide an update on everything. 


If you remember, Greg began chemo in February 2019. After enduring the chemo for 8 rounds, at the end of July, the doctor decided to give his body a break to recover. At this point he had been experiencing extreme fatigue. After two stable scans and no signs of growth, the doctor decided to end Greg’s chemo treatments for the time being. The plan is to scan every three months to watch the tumor and lymph nodes for any changes. If things start to grow or change a new treatment will be started. In the meantime, Greg is off treatment.


Greg has remained seizure free, praise God! He has been meeting with his neurologist every two months and we are continuing to find the best medication regimen. The doses of medicine remain high and Greg is working through the sedating effects.

Through all of this, Greg continues to work remotely.  He logs time when he can and takes naps as needed to give his body the rest and recuperation it needs. The doctor said the chemo effects can persist through six months after treatment has stopped. He stopped treatment at the end of July, but the fatigue and nausea linger.



Thank you for the continued prayers.

Positive Results but a Long Journey Ahead

Welcome to the next Thriving not Just Surviving Blog post. This past week I underwent another CT scan to monitor the progress of the last 4 rounds of the 2 drug chemotherapy regimen. This time the scan revealed that several of the enlarged lymph nodes were slightly shrunken in size and the others remained stable. So this is encouraging progress. 

Now that I have completed the initial four rounds using the 2 drugs my oncologist wants to continue with a single chemotherapy drug (Pemetrexed) for the long term. In this case the "long term" means up to two years or until the cancer stops responding. Right now it's hard to wrap my mind around receiving a chemotherapy infusion every three weeks for the next few years, but such is the life of a stage four cancer patient. The goal is to get the "best bang for your buck" out of each treatment option before moving on to the next. 

Additionally, our only other option is the clinical trial that I had briefly mentioned in a previous post. This option is still available, but its only a phase 1 trial and there is little information regarding its efficacy at this point. If my current regimen stops working we will move to this trial, but for now we plan to move forward as discussed with the chemotherapy. However, as with all things medical, everything is very fluid and there are constantly new advances being made every month that could impact our plan.

We also met with the neurologist and made adjusted adjustments to some of my secondary seizure medications that were interacting adversely with the anti-nausea medication. It's been a constant battle trying to balance the use of anti-nausea and anti-seizure medications at the same time because they both work similarly on the brain. I would not wish epilepsy and stage 4 cancer on my worst enemy, as the side effects have continued to worsen with each round of cancer treatment. 

As always, Maureen and I continue to be thankful for the prayers and support from everyone and will continue to share our journey that God has given us. 

Cancer Update and a Seizure Diagnosis

Welcome back to the next Thriving Not Just Surviving blog post. This post will be a little longer as I will recap the last month of appointments concerning the cancer and seizures. I hope this provides some information to clarify what has been going on as I haven’t posted for a few weeks.

Cancer
Round 2 of chemotherapy was successfully completed approximately three weeks ago and I received round 3 this past Thursday. Additionally, this past week I underwent my first chest CT scan since starting chemotherapy treatment to determine its effectiveness. The scan showed the three enlarged lymph nodes to be stable in size; meaning that nothing shrunk, grew, or spread. While I would categorize these results as good and not great, I am still thankful to have a very limited amount of cancer remaining in my body.

My oncologist said that we will continue to complete the fourth round with the two current chemotherapy drugs and rescan. If the scan continues to shows stable results, he will continue the regimen with only a single drug. If the cancer grows or spreads, he’ll switch over to a clinical trial.

Now that I’ve had three rounds of the 2-drug chemo combination the side effects are more noticeable including fatigue, nausea, body pains, and headaches. Additionally, my blood counts have started to drop slightly and my liver enzymes are slightly elevated. My oncologist said its quite possible that my anti-seizure meds are exacerbating the side effects. I’m doing whatever I can to balance work, rest, and life. So far, it’s been fairly manageable, but I expect it to be more difficult moving forward.



Seizures
Since my seizures started over a year ago, we’ve been on a wild goose chase to determine what is the overall cause of the seizures. As a review, the primary possible causes of the seizures included: nonepileptic, autoimmune, and traditional adult onset epilepsy. I’ve provided a description below as well as our evidence and our final determined cause of the seizures.

1.       Nonepileptic Seizures – These are not true seizures and are psychotic events caused by trauma (such as a terminal diagnosis) and often present themselves as a grand mal seizure in which the patient stiffens and jerks. Traditional anti-seizure meds do not have any effect and the episodes occur without pattern. No abnormal brain activity occurs during a nonepileptic seizure.

a.       As you can see based on the description some of these symptoms align with my situation. However, once we were able to obtain a video recording of my seizure our epileptologist was able to study the video and look at my stiffening, movement, and breathing. He conclusively ruled that my seizures were epileptic. Therefore, we have eliminated nonepileptic seizures from our list of causes.

2.       Autoimmune – An autoimmune response could have explained a cause for the seizures as well. This could have been from the immunotherapy treatment as well as from the actual cancer. The immunotherapy drug could have caused my immune system to go haywire and attack a certain portion of the brain resulting in a seizure. Even without the immunotherapy drug some cancer patients experience what is referred to as paraneoplastic syndrome in which the immune system also goes haywire and can attack certain organs including the brain which could have resulted in the seizures.

a.       At the time of my first seizure this was one of the most likely causes that was considered. I underwent two different lumbar punctures 6 months apart to look for biomarkers in the cerebral spinal fluid that would indicate an autoimmune issue. Both tests came back negative. Additionally, it’s been 18 months since the immunotherapy drug was discontinued and if that was the cause, the seizures should have stopped. The final piece of evidence that ruled autoimmunity out had to do with the last seizure that occurred in February. When I received my first round of chemotherapy they started me on a dose of oral steroids and gave me a high dose intravenously as well. Steroids are the main form of treatment for autoimmunity issues in the brain. If autoimmunity was causing the seizures this would be the time for seizures to not occur.

3.       Traditional Adult Onset Epilepsy – Now that I’ve gotten to the end of the list of potential causes it pretty easy to assume that this is what has been concluded. However, its important to know that it’s not just because we eliminated the other causes, but also because there is a preponderance of evidence that supports Adult onset Epilepsy as the diagnosis.

a.       From my limited research I’ve found that about 30-40% of all epilepsy is genetic; meaning that its inherited from family members or relatives. Epilepsy does occur on my father’s side of my family and both cases were adult onset. Additionally, throughout the past year it may seem that there was no pattern to my seizures and they seemed to happen at random. Only part of this is true now that I had the seizure in February 2019. There is something referred to as drug resistant epilepsy. This epilepsy occurs when it’s very difficult to find medication to effectively treat seizures for an extended period of time. Many times when the patient first begins the medication regimen the medication appears to work (the honeymoon period). My first honey moon period was nearly three months last spring. It appeared that the first medication we tried stopped my seizures and I was able to return to the office. However, after three months I had another seizure so my neurologist increased the dosage. I went another 6-8 weeks without a seizure and then experienced a more severe seizure. We added a secondary medication and then from that point on I averaged a seizure every month or less with increasing severity (despite increasing the medicine dosages), ultimately permanently dislocating my shoulder which required an emergency surgery. The sliver lining is that after the seizure that dislocated the shoulder my neurologist switched to a completely new medication and the “honeymoon” period lasted 4 months allowing my shoulder to fully heal. None of the other potential causes would have this type of pattern. It would be extremely ironic and when combined with the other evidence it makes for a solid diagnosis.

We are not sure the frequency and severity of the seizures in the future, but we are glad to have arrived at a conclusion for the cause of the seizures. We are not going to stop seeking positive steps toward living with the seizures (more effective medicine with less side effects, potential surgery, less severe seizures etc..). We thank you for your continued prayers and support. Even though we are in St. Louis, we still feel your presence and appreciate your support from people all over the world.

Recapping the Seizures

Welcome back to the next Thriving Not Just Surviving Blog post.

I was hoping to use this post to briefly highlight the completion of round 1 of chemotherapy on February 7. It is true that I did complete round 1. However, on the evening of Saturday, February 9 I experienced 3 seizures as I was going to bed.

After laying down in bed I experienced an aura which is what a seizure patient sometimes experiences right before a seizure. For me it’s usually a déjà vu feeling, mind racing, and a familiar music or song playing through my mind. Overall, the aura can be very hard to describe, but it’s very important because it can help a seizure patient get to a safe place before the seizure occurs. In this situation it allowed me a few extra seconds to pull off my CPAP mask and lay back in bed before the minute-long seizure occurred.

After the first seizure ended there was a 15 second break and I experienced another 30 second seizure. With the help of my parents, Maureen was able to keep me from injuring myself during the seizures while my dad called the ambulance and my mom filmed the seizures. Ever since we were unable to record a seizure in the Epilepsy Monitoring Unit (EMU) our neurologist, who is also a trained epileptologist, has been wanting for us to record one of my seizures. A trained epileptologist can sometimes look at a video of a seizure and determine if the cause is epileptic or some other cause. We’re hoping that the videos we have will be good enough to make a determination.  

When I arrived at the hospital, they did a CT scan of my head and right after the scan I experienced another minute-long seizure. I struggled to breath during this seizure so they fitted me with an oxygen mask and moved me to the ICU where I spent the night. On Sunday I they performed a full brain MRI and I was seen by the neurologist who was working at the hospital. The MRI did not show any evidence of cancer or structural abnormalities that would have caused the seizures. These results were consistent with every other brain MRI I’ve undergone. On Monday I was discharged from the hospital.

It’s worth nothing that it had been 4 months to the day since my last round of seizures. It’s quite an accomplishment to make it 4 months between seizures, but it’s equally as frustrating. The silver lining is that these seizures were not nearly as severe. My shoulder did not sustain any damage and I am resuming my physical therapy this week.

We still don’t have a definitive answer yet to the cause of these seizures that have now been occurring for over a year now, but I think we are getting very close. That being said, I expect to continue with round 2 of chemotherapy on Thursday, February 28.  

Beginning Treatment

Maureen and I finally received the highly anticipated genomic testing results. As it seems with most of my medical tests, the results were a “mixed bag”. We did similar testing when I was first diagnosed two years ago and we completely “struck out” regarding eligibility for a targeted therapy for my specific cancer mutation. Fast forward to today and the best analogy I can give is that we reached first base on an infield error.

More specifically, the mutation that came back in the test results does not have an effective approved targeted therapy. There are a few clinical trials that are in the early phases related to this mutation and only one of them appears to be promising. This clinical trial is currently considered an “investigational” drug and has very stringent eligibility requirements. One of the requirements is that the patient has to have already undergone standard chemotherapy, which I have not had.

Therefore, Maureen and I have decided with the advice of our oncologist to do several rounds of standard chemotherapy and see how it goes. The scheduled chemotherapy regimen includes two drugs infused every three weeks. The plan is to do at least 4 rounds and rescan before the third round.

Fortunately, we caught the cancer early so there is a good chance the chemotherapy knocks out the cancer. The best-case scenario is to be cancer free after the chemotherapy regimen and also then be eligible for the clinical trial should the cancer return.

The first infusion is scheduled for Thursday, February 7. At this point, I’ve known about the cancer returning for over a month; so, I’m just ready to begin treatment and start fighting again. I know there will be side effects and the potential of increasing my seizure risk. However, I’m confident that my body will rebound as it has with every challenge over the past two years and I will continue with daily life as much as possible.

Preparing to Fight a Familiar Enemy

Welcome back to the next Thriving Not Just Surviving Blog post. I am pleased to announce that I (Greg) am back to writing the posts. I am very grateful for Maureen’s fantastic job at writing the last few posts. As a warning, I haven’t written in a while so I’ve got a few months of “cabin fever blogging” built up so it’s going to result in a longer than usual post. I hope you are ready for it 😊.


Its been a crazy past few months with the transition to St. Louis, shoulder surgery, adjusting to new seizure meds, and starting physical therapy. On a positive note, my shoulder is continuing to heal and I began physical therapy at the end of December. Its also been over 3 months since my last seizure, which is by far the longest seizure-free period I’ve experienced since the seizures started nearly a year ago.

Despite all this good news the primary reason for this post is that after running a variety of tests we recently determined that my lung cancer has returned. I know this may sound crazy considering we stated that my scan in December showed stable results. So, I will elaborate further.

Over the past few scans we detected activity in my lymph nodes. A July scan detected a few very slightly enlarged lymph nodes. They were barely larger than normal so my oncologist decided to wait and rescan in September. The September scan revealed the previously enlarged lymph nodes to be shrunken back to normal size, but different lymph nodes were enlarged. In most cases this does not represent cancerous activity, but the body struggling to fight infection. The December scan revealed a similar type scenario, but with more lymph nodes enlarged and larger in size than previous scans. Throughout all these scans the tumor in my right lung remain unchanged, indicating stable results. At the end of December, they biopsied one of the lymph nodes in which they take actual tissue from the lymph nodes and test it to determine if the cells are cancerous. This is by far the most conclusive test that can be done. As you might expect, the test came back positive for cancer.

What Does This Mean?
The silver lining is that we did catch the cancer early. As of December, the cancer was characterized as slow growing. It also means that the tumor that we had been monitoring since discontinuing treatment in August 2017 most likely was not cancerous and simply left-over scar tissue from the golf ball size tumor that appeared at the initial diagnosis. If it was cancerous, it most likely would also be growing along with the lymph nodes.

My oncologist has now submitted the biopsy tissue for genomic profiling of the cancer. This is the most advanced testing that can be done on cancer cells today. This testing involves sequencing the DNA of the cancer cells to identify what mutation(s) exist that are causing the cancer. There are several mutations that can be treated with a “targeted therapy”. These targeted therapies are a type of cancer treatment that can be given in pill form to a patient and are designed to attack only the cancer, unlike traditional chemotherapy which attacks all fast-growing cells. This results in much better outcomes for the patient and less side effects than traditional chemotherapy.

There is no guarantee that my cancer will test positive for a targetable mutation, but that is what we are hoping and praying for. I hate to get too much into hypotheticals, but I am also a planner and I like to analyze so I’ve already broken down and ranked the potential treatment options based on what the test results may be. I prefer to think of it as “drawing up the battle plans” for the fight ahead.

1.    Targeted Therapy – This is by far the best treatment option offering the least amount of side effects, best chance of a prolonged response, and least impact on daily life.

2.    Clinical Trial of a Targeted Therapy – Its possible that I may have a mutation in which there is no approved targeted therapy. However, there are many clinical trials underway testing promising new drugs for newly discovered mutations. If I have a mutation that aligns with a clinical trial, this will be our course of action.

3.    Immunotherapy / Chemotherapy – I’ve already undergone immunotherapy which worked amazingly well, despite discontinuing treatment early because of toxicity issues. There is no guarantee that it would work again and there is the risk of experiencing toxicity issues again. Traditional chemotherapy is always an option, but brings the most side effects and the least chance of prolonged remission.

We have options and have caught the cancer early. This time around its more complex, due to my seizure history and partially repaired shoulder. Adding any type of cancer drug will increase my seizure risk and most likely exacerbate the side effects of my seizure medication. There is a very small chance that my oncologist may want to wait and monitor the cancer for a few months, but I am by no means depending on that.

Next Steps
Maureen and I have an appointment later this week with our oncologist and hopefully we’ll receive the test results and decide on a course of action. Based on my lengthy explanation above we are definitely hoping that I am eligible for a targeted therapy. However, I am mentally and physically prepared for whatever course of action is needed.

Reflection
I was initially surprised at this news, but being a stage 4 lung cancer patient, I always knew that the cancer was going to come back at some point in the future. It’s unfortunate that the majority of my progression free time was spent dealing with seizures, but nothing is going to change that now. I am very blessed for all the support that Maureen and I have received over the past two years. At times its been frustrating that I cannot drive anymore, but it does make life simpler not worrying about traffic or commuting. I expect that this will help as I begin whatever cancer treatment is decided upon. I will be posting again once we receive the test results and decide on a course of action.