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.
