I have Stage 4 Esophageal cancer. What does Stage 4 mean? It means my cancer can be controlled, not cured. I could go into remission but the cancer is most likely to recur in the first five years after treatment ends.
- Decreased distal esophageal wall thickening with residual, very low level FDG uptake, improved compared to prior.
- Interval resolution of previously seen hypermetabolic left periaortic and left pelvic lymphadenopathy.
- Findings are consistent with complete metabolic response.
But notice DR. CC’s impression reads “Findings are consistent with complete metabolic response”?
*Complete metabolic response doesn’t necessarily mean you are cured but it is the best result that can be reported. It means the cancerous tumors are now gone and there is no evidence of disease.
So what does this mean? It means I am scheduled for an upper endoscopy. With this endoscopy they are going to be more invasive and get a biopsy of the tissue in my lower esophagus.
*An upper endoscopy is a procedure in which a thin scope with a light and camera at its tip is used to look inside the upper digestive tract — the esophagus, stomach, and first part of the small intestine, called the duodenum
The biopsy is going to reveal whether or not there is any cancer left.
Dr. CC said there is a good chance cancer still exists in my lower esophagus. She is going to review the endoscopy and biopsy and present her findings to the oncology board at UIHC and determine a course of action.
I will likely be put on what is called maintenance chemo for an undetermined amount of time and continue follow up scans for the rest of my life.
Surgical resection of the esophagus is very controversial in Stage 4 cases due to recovery and statistical evidence that cancer can and likely will return. It is a quality of life concern. It’s a “does Matthew want to live off protein shakes for many weeks and possibly months” concern. Also, there is a strong history of pulmonary complications following surgery including but not limited to aspiration and swallowing problems. Quality of life can drastically tank. If aspiration occurs post surgery, some patients have spent 50 plus days in intensive care. In one case, a man spent 139 days in ICU. Respiratory issues due to the surgery could last a long time and because our blood needs oxygen, surgery induces the possible risk of diminishing my life expectancy, in spite of the cancer.
So enough about all that…let’s talk about chemo induced peripheral neuropathy. Good times.
Effects of neuropathy:
Tingling (or a “pins and needles” feeling)
Burning or warm feeling
Discomfort or pain
Less ability to feel hot and cold
Cramps (in your feet)
In the past month, Dr. CC decided to remove the drug, Oxaliplatin from my chemo regimen. The reason: my hands and feet are going numb and tingling. At night, my fingertips feel like they are trying to explode. Couple this with my existing carpal tunnel syndrome and cubital tunnel syndrome in both hands/arms…exciting stuff!
So what do I do about the neuropathy?
Here is a real zinger. Some of my neuropathy may be permanent. All of it will take a long time to subside or just get better. Yesterday I started taking Gabapentin which helps control nerve pain. I will have to take three, 300 mg pills per day on top of Pantoprazole for reflux control, Ativan for anxiety control and Ritalin to combat the chemo and various drug induced brain fog and lack of focus (it works well).
I started taking the Gabapentin and already feel much relief from the nerve pain in both my hands and feet. I look forward to attempting to play guitar again and being able to walk up the stairs without risk of spraining my toes (this happened). Numb feet, not good.
I decided to leave my position at Geonetric as a Senior Front End Developer with full support of family and friends. I have many reasons for making this difficult decision. I can sum it up with the following: in June of 2018, a tenured oncologist told me I might live another three years. I followed this up with extensive research only to further validate his statement. The five year survival rate for Stage 4 esophageal cancer is not good.
My plan is to focus on my health and figure out the next chapter of my life. I still have health insurance. I am not broke, yet. I will need work, eventually. Let’s get rid of the cancer in the mean time.
Thank you for reading and to all my friends at Geonetric, you are missed! Geonetric and its employees have been very supportive since my diagnosis and I will never forget this. I am very grateful.