Sep 21, 2017 Latest post:
Jun 26, 2018
We are using this CaringBridge website to keep family and friends updated in one place.
I started treatment for a squamous cell carcinoma of the head and neck (SCCHN) involving the left tonsillar and some of the left cervical lymph nodes on Monday, September 25. So, how did I get to this point?
Vickie was having choking/coughing problems and we found an excellent ENT physician (Dr Franklin) to evaluate her situation. It turns out that the small piece of thyroid that was left from her previous goiter surgery several years ago had grown quite large and was the source of her problems. A needle biopsy came back as a follicular neoplasm. The results were suspicious for cancer but Dr Franklin felt it wasn't. So, the decision for surgery came down to how much discomfort Vickie was willing to put up with from the enlarged thyroid tissue.
Also during this time (sometime in early to mid June of this year), I developed a cough due to something in the back of my throat that I couldn't cough loose to swallow or spit out. When I mentioned to Vickie that I thought I should have Dr Franklin take a look at my throat, she said, "Oh, sure - copycat copycat!" [smiley face]
We scheduled Vickie's thyroidectomy surgery for August 30 and an initial appointment for me. The soonest I could get scheduled as a new patient was August 28.
Vickie's surgery went well. Although, when she was still groggy from anesthesia, she appeared to be having trouble swallowing water and I asked her if it hurt for her to swallow. She replied, "They just cut my throat open, ya nut job!" [smiley face]
My cough became severe and the sputum contained some frank blood. So, my appointment with Franklin was moved up to August 22. At that appointment, a scoping of my throat revealed a huge left tonsil. Dr Franklin was frank with us (pun intended) as he informed us that he was fairly certain that we were looking at cancer and probably a squamous cell carcinoma rather than a lymphoma. Two days later over his lunch hour (he squeezed me in), Dr Franklin removed most of my left tonsil and submitted it to pathology. The pathology report stated that it was a high grade squamous cell carcinoma that tested positive for the p16 marker (associated with HPV positive cells). CT and PET scans showed activity in the tonsillar area and in at least one of the left cervical lymph nodes. So, under the current cancer staging system, I have a stage 4a cancer (not real comforting).
As an aside, the current cancer staging system is very old and it's in the process of being updated. Since the p16 positive SCCHN cancers respond well to radiation treatment, I would be a stage 2 if the new system were in place now (we like that much better).
Our initial visit with a medical oncologist at Stormont Vail Hospital in Topeka didn't go well. Aside from the pathology report, he didn't have anything (e.g., CT and PET scans) specific for my cancer but he went into a lot of treatment detail and supposition that scared Vickie and Rebecca. He made some self-deprecating comments we believe were intended to relax us but all they did was diminish our confidence in him. We believe he's young and still sorting out his bedside manner. On the other hand, Vickie and I were very pleased with Dr Tejwani, a radiation oncologist also at Stormont Vail, and would have been very comfortable with him being involved with the treatment.
We decided to go with a couple of KU oncologists specializing in head and neck cancers. Dr Chen is my radiation oncologist and Dr Neupane (I use "new pony" as the mnemonic) is my medical oncologist. Both practice in the Kansas City area - not as convenient as having the treatment in Topeka but Vickie did some "extending of life dollar cost averaging" [smiley face] and we decided it will be worth the drives. She actually wants to keep me around - who would have guessed?!
Rather than the traditional chemo drug cisplatin, I'll receive cetuximab. From Wikipedia: "Cetuximab is an epidermal growth factor receptor (EGFR) inhibitor used for the treatment of metastatic colorectal cancer, metastatic non-small cell lung cancer and head and neck cancer. Cetuximab is a chimeric (mouse/human) monoclonal antibody given by intravenous infusion that is distributed under the trade name Erbitux in the U.S. and Canada by the drug company Bristol-Myers Squibb ...".
As I stated above, my first treatment was Monday, September 25. Due to some of the possible side-effects, I was admitted into the KU hospital for the infusion treatment. since the initial treatment went well, I'll have weekly infusions of cetuximab at the KU Cancer Center rather than the hospital. My radiation treatments started Monday, October 2 at the KU Radiation Pavilion. I'll have daily radiation treatments (Monday through Friday) for about 7 weeks.
We have a rough patch of road ahead but we'll get through this. I'm in a good place mentally and spiritually.
We appreciate your kind words of hope and encouragement. Thank you for visiting.