Treatment Information

31 January 2010
I called Dr. Akins office on Friday (29 Jan) to find out if my referral had been approved by Tricare and found out the original doctor that Dr. Akins wanted me to see wasn’t on the approved list, so I was being referred to someone else, and he is in the process of moving offices. I should find out something on Monday, 1 Feb.

I then talked to Dr. Akins and told him I wanted to go forward with the radiotherapy and to start the ball rolling. His office set me up with appointments on the following Thursday (4 Feb) for my mask fitting and the so-called tattoo markings on my neck for targeting. We also talked about treating my lymph glands in my neck and we agreed that radiotherapy was a better alternative to a radical neck dissection at this time. We also discussed using amifostine to mitigate the affects of radiation on my salivary glands. He didn’t recommend it, due to its side affects and lack of medical personnel to monitor me during its use. I wasn’t happy with that answer and fumed about it all the way home from work that afternoon. Dr. Akins said he would call Dr. Richards (hematology) and discuss chemo therapy alternatives. He is also contacting the dental clinic to have me evaluated to see if I need any dental work prior to the radiotherapy and to have them make me up some radiation splash guards for my teeth.

Once I arrived home I got a call from Dr. Richards, he asked if I could come in on Tuesday (2 Feb) to discuss chemo/anti-body treatment. He wanted to do this face-to-face rather than over the phone, but we still talked about the options. He said he had talked to Dr. Akins and that he had recommended using Erbitux (cetuximab) ((Cetuximab binds specifically to the EGFR on both normal and tumor cells, and competitively inhibits the binding of epidermal growth factor (EGF) and other ligands, such as transforming growth factor–alpha. Cetuximab can mediate antibody-dependent cellular cytotoxicity (ADCC) against certain human tumor types. Studies have shown that cetuximab inhibits the growth and survival of tumor cells that express the EGFR.)) I’m guessing all of that is good. Erbitux will have to be started a week prior to radiotherapy, so we need to make up our mind quick which drug we are going to use (erbitux or cisplatin). Erbitux has some pretty ugly side affects that pile on the radiation side affects so I’m not looking forward to its use.

We also discussed the use of Cisplatin, a platinum-based chemotherapy drug used to treat various types of cancers. It was the first member of a class of anti-cancer drugs. Platinum complexes react in vivo, binding to and causing crosslinking of DNA which ultimately triggers apoptosis (programmed cell death). Again, I guess this is good.
It also has ugly side affects.

Dr. Richards also suggested installing a central venous catheter ("central line", "CVC", "central venous line" or "central venous access catheter") is a catheter placed into a large vein in the chest (subclavian vein). It is used to administer medication or fluids, obtain blood tests. Certain medications are preferably given through a central line (i.e. cisplatin etc.) He also recommended installing a Percutaneous endoscopic gastrostomy (PEG). The purpose of a PEG is to feed patients who cannot swallow food and to provide fluids and nutrition directly into the stomach. A surgical opening into the stomach is made through the skin using a flexible lighted instrument (endoscope) passed orally into the stomach to assist with the placement of the tube and secure it in place.
Don’t these 2 procedures sound like fun? They’ve had trouble finding veins to take blood and for the biopsy procedure on the 8th, so the CVC is probably a great idea if I’m going to undergo chemo. The PEG on the other hand is a precaution to when or if I can’t eat due to the side affects of radiation/chemo. Two people I’ve talked to that have undergone the same treatment haven’t had a PEG installed. One didn’t need it, but the other probably did, he ended up in the hospital a couple of times due to dehydration.

So it looks I’m going to be having a great time over the next 2 weeks preparing for my treatments starting (hopefully) on 16 Feb.

We make a decision, I think.

26 Jan 2010,
Today I find out a co-worker had the same cancer as me 13 years ago. He offers to talk to me about it and we meet almost immediately. He tells me his story and recommends staying away fromr surgery. Our bodies weren’t meant to be cut into, stay away from any invasive treatments. In addition to a tumor on his tongue, he also had a lymph tumor and they did a radical neck dissection on the left side of his neck. His cancer was cured by chemo and radiation. He was given the full dose of radiation and will not be able to be radiated again. He’s been cancer free for 13 years.

Dr. Akins called this afternoon and said they were recommending radiation as a course of treatment. I asked him about the referral and he said he was hand carrying my records to a colleague and see if they can set up the referral through the proper administrative folks. Meanwhile I need to make a decision and let him know so he can set up the simulation and schedule the treatments. My head is spinning again.

I talk to Terry and we discuss the pro’s and con’s of the surgery and radiotherapy and decide to go with the radiotherapy. I can probably learn to deal with the dry mouth.

Sales Pitch

I met with Dr. Richard on 19 Jan 2010 to discuss chemotherapy. We went through the medical history drill, my symptoms that led me to being diagnosed and then a discussion about chemo treatments. In the end Dr Richard said this cancer wasn’t a good candidate for primary chemotherapy, but he’d talk to Dr. Eller, meet with the tumor board and see what everyone else was recommending. He then gave me a physical exam and talked about hockey.

My wife and I met with Dr. Akins on 20 Jan 2010 to discuss radiation therapy. Again the medical history drill, blah, blah, blah. Dr. Akins then went through what radiation therapy he would recommend. Then we started asking questions. What technology was available? He said they have IMRT. I asked him if they had TOMO radiation therapy, he said no. I asked him if TOMO wasn’t better than IMRT, he said they do good PR, and make a big deal of the technology, but it really isn’t any better than IMRT. I wasn’t impressed with his answer. He said IMRT is a good treatment for my diagnosed tumor and I should seriously consider it. We asked for a referral, he wasn’t impressed. I asked him if he had seen the CAT scan, and if it showed how deep the tumor went into my tongue. We went and reviewed the CAT scan. I was impressed; I’d never seen one before. It showed my tumor very well, but we couldn’t tell how deep it went into my tongue. We talked some more, he did an exam. Then he offered a different procedure. The procedure consists of placing radioactive implants in or near the tumor twice a day for 5 days. They can give higher doses for shorter periods at the primary tumor site. This appealed to me because it was a shorter treatment time, affected the salivary glands less, but the procedure wasn’t offered at my medical facility. Dr. Akins said he’d call a friend that works with the procedure on the east coast and see what he recommended.

Off To The Internet

In between the appointment on the 15th and my next appointment with hematology we both spend a lot of time doing research on the internet. There’s a lot of good, bad, mediocre, and down right crap out there. Be wery, wery careful. The biggest problem I had was finding information about my exact diagnosis. Every anecdotal case I came across was similar, but not exactly the same, or not similar at all, but had some good information. I was scared to death and couldn’t find enough good information to make an informed decision on which procedure to go with. I was afraid they were going to take too large a chunk out of my tongue and I wouldn’t be able to swallow, or my salivary glands were going to be destroyed by the radiation and I’d end up with serious dry mouth and swallowing problems. I was more afraid of the outcome, than I was for getting through whatever procedure I decided on.

So Now What Do We Do?

15 Jan 2010, Terry and I go to see Dr. Eller. Not as long of a wait in the waiting room this time. Dr. Eller sits us down and goes over the pathology report. 2.4 centimeter tumor, T2, N0, M0, squamous cell carcinoma (SCC), on the back of the tongue. Dr. Eller goes over what all that means and our heads spin. Next comes a lot of talk about possible procedures, surgery, chemo, radiation, combinations of each, radical neck disections, speech therapy, not being able to swallow, dry mouth, feeding tubes. Lots of notes that now don’t make any sense. Dr. Eller sets me up with appointments with hematology, radiation therapy, speech therapy and says we’ll meet again once I’ve talked to everyone else and gotten their sales pitch.

What the heck is a panendoscopy?

My appointment on the 8th was for 10:15 am. I hadn’t eaten since 8:00 pm the night before. My wife and I got to the check-in desk at 9:45 am. They took us into another room, took my blood pressure (it was high), filled out some paper work and was given a pair of nice little booties and two hospital gowns (put one on frontwards, and one on backwards). We then went to a room, a regular hospital room only without a bed and waited. About an hour later, they came in and said they needed the room for someone coming out of surgery, could we please move to the waiting room. We moved. At 12:00 pm my wife went to check if we’d been forgotten. I had gotten a splitting headache, bordering on a migraine. At 12:15 they finally came and got me.

I was taken into the pre-surgery prep room and they proceeded to try and find a vein. That was a lost cause, but after trying several places they finally found one in my left arm. The anesthesiologist came in, assembled what he called the peace pipe and had me breath through it for a while, his assistant then gave me two shots . . . and then it was 4:30 in the afternoon.

I woke up with a sore throat and lots of confusion. It’s all pretty much a blur until the couch in the living room. My wife was trying to make me comfortable and I remember trying to eat some soup. I don’t care what anybody says, do not eat ice cream after a panendoscopy, you will regret it. If I remember right, water wasn’t much better. Then I took a Percocet and everything was good. When my head cleared the next day my wife went over the conversation she had with Dr. Eller after I came out of surgery. I was diagnosed with squamous cell carcinoma (SCC). The next 4 days were pretty much just sitting around trying to deal with a sore throat. Every day it got better.