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.