The Taber Family Blog

Baseline blood draw

Things are really moving now. Today I had my follow-up appt with the doctor who will be administering my chemo. Dr. Vikstrom told me he had consulted with Dr. Jones about whether to use Cetuximab or Cisplatin and the concensus is to use Cetuximab. So I’m pretty excited about that!

Actually treatment with Cetuximab is not even called chemo. It’s called antibody therapy and the side effects that I’ve written about previously are not nearly as bad as cisplatin. I’ll start this IV therapy on the 5th of February, about a week before the radiation begins.  The first dosage is considered a loading dose, so I’ll be sitting during the 2.5 hour procedure, probably listening to my iPod. I was told I might not even feel any effects of this dosage, but I won’t hold my breath. He even went on to tell me I probably wouldn’t even need a feeding tube, since the nausea and eating related side effects of Cetuximab would be much less of a concern than if I were to be administered cisplatin. Amazing.

So after the consultation, I was introduced to the technician who would be administering my therapy, and they took some blood to create a baseline for future monitoring of my magnesium levels, which can be effected by Cetuximab. I’m feeling much better about things now, and have even started to think some Spring time performances by my band might even be possible! Yippee.

Pain scale today: 2    (10 being the worst)

Today I got a call from my new “complex” caseworker from the North Bay Group who had just been assigned to my case. Essentially as a new diagnosis of cancer and with all the required coordination of doctors and information about my case, my medical group sees fit to assign someone to assist me with managing all of the various bits of information, dates and other communications among all the doctors with whom I’m involved. Pretty cool idea from what can discern so far.  My case worker told me I am to rely on her to make sure everything moves forward in a coordinated fashion and that she’ll take care of all the details.  She graciously allowed me to whine a bit about why things seem to move so slowly, and about my new daily battle with pain in varying degrees. She had a lot of good information and somewhat put my mind at ease for now.

I also learned that Dr.’s Woolf and Kaplan concurred that the best path forward was radiation and chemo, so I feel relieved that issue has been put to rest. So I’ll start my radiation treatments on the 12th of February, along with chemo for a total treatment time of roughly 6 weeks.

The pain in my mouth has steadily gotten much worse and I’m having trouble getting to sleep at night for about the past week. It takes time each night to feel like I’m in a good position, with a good airway and convince myself I won’t snore so badly this time. Right!  One other downside to this whole fiasco is the snoring. Denise has been very understanding, but I know I’m sounding like a lumberjack during the night. The pain has started to make its way past the Advil and Aleve, and sometimes it becomes almost unbearable to speak. Feels like someone is pinching behind my tongue with a pair of needle-nose pliers pretty often these days.  Thankfully I did get a prescription for Tramadol from Dr. Woolf today for the pain. And I’m starting to spit up small amounts of blood each morning. UGH. Sorry for the gory details. I can’t wait to start this treatment and feel like something is finally being done about this whole thing.

I’m halfway through a little book called “The Key to Yourself.” I got this book from Denise, who got it from my Uncle Lynn. A very positive read that insists that every great success in life, whether it be personal success, or even winning against disease begins with a single thought, or mantra. Personal empowerment and healing achieved through intense focus and positive thought on the end result. It’s an ancient concept, but clearly a very powerful idea everyone can relate to. I was also given another book as a gift named Anticancer: A New Way of Life. I haven’t started reading it yet, but it looks to be a very comprehensive reference for cancer causes and ways to fight it with food and lifestyle changes.

And finally, my princess Denise has gone into overdrive with her amazing cooking, targeted at anti-cancer foods and ingredients. I’ve been given a hearty re-introduction to cabbage, tumeric, deep green vegetables and many other things I wouldn’t have ordinarily eaten. What can I say… she knows best.

Lately I’ve been tossing around the idea of getting rid of my cable TV service, Comcast, and simply not paying for a television feed any longer. Seems like such a waste of money, especially since we don’t really watch that much TV. The kids enjoy cartoons and some of the programming on Nickelodeon! and the Disney channels, and I’ve been known to be a big fan of the History channel. Oh there’s also HGTV that can keep Denise and I engaged for hours. UGH. But since we primarily use our TV for video games and for watching our BluRay and DVD movies, there really is no justified need to keep allowing Comcast deep into my wallet each month. Would it be a drag to lose some of that great programming? Sure, but could our family live without it? Absolutely!

I’ve recently learned that it is entirely possible to get free HD (high definition) programming over the air, using nothing more than a low cost, specialized antenna. Amazing! My older brother Louis introduced me to this in early January and I’ve been intrigued by it ever since. Of course the programming you’ll receive over the air is by and large limited to what you can get from broadcast locations in your local area. That’s good, because I would certainly prefer my local network stations HD feed over a standard resolution, since I can add in an OTA DVR device later to record some of my favorite network TV shows like SNL, CSI and major league baseball games.

So far, it appears you can use inside and outside antennas that vary in prices from $30-$100. The two that I’m drawn to so far are the Terk HDTVa and the Philips High Performance Amplified Indoor Uhf/Vhf/Fm/HDTV Antenna. I really like having an indoor antenna (especially with the high winds around here), and both of these have been highly rated by other buyers. You can mount them in the attic of your home without having to re-adjust the antenna. I’ll make the switch to OTA HD programming within the next month or so and happily say goodbye to Comcast!

Today was a quiet and rainy day on the home front. We spent the morning attending the Bethany Preschool’s 35th anniversary event and watched Owen sing his heart out with a boatload of other little preschoolers. I actually brought my camera along but forgot the memory card at home. DOH!

The kids pelted by hail

Later we watched a DVR’d SNL from two weeks ago and saw the skies suddenly darken and then a really nice hail storm started. Pretty cool, because it doesn’t happen much here in Vacaville. Snapped a pic since I was in close promoxity of my memory card. The photo is of Grant, Lauren and Wyatt.

I had my appointment with my radiologist today. It was initially a consultation, but we were able to start the preparation work as well. This is a good thing, because lately I’ve been feeling like this whole process has been crawling along at a pathetically slow pace. I’m ready to start this process and I’m tired of waiting!

Today’s meeting with Dr. Chris Jones was great. He had a lot of really good information about what seems to work and what doesn’t with cancer at various stages. Not only with radiation, but with the entire regimen of treatment options available. Today was the first time I heard that chemo using Erbitux should probably be what I choose. Even better, it was the first time a doctor told me my treatment options are ultimately my choice.  Very cool.  Anyway, Dr. Jones told me the use of Erbitux/Cetuximab has been seen as very effective for stage II head and neck cancer, in combination with radiation, and without the horrible short and long term side effects. Erbitux does have some side effects of its own, including skin rashes and acne, but I can certainly handle that.  Dealing with potential nerve damage, kidney damage, hearing loss and many other well documented side effects of cisplatin is something I would like to avoid. Additionally Erbitux doesn’t give the patient nearly the level of chronic nausea either. All good news. I was concerned about the cost of Erbitux, but Dr. Jones says it’s an FDA approved drug and my HMO would cover it. Whew.

We also talked about the short term effects of radiation, including the facial sun burn, scarring of the skin in my neck and the need to really take care of my teeth. He reminded me that I would need to treat my teeth with flouride before bed for the rest of my life. Denise will certainly have all the “tools” to help my short term skin problems. Thanks MK!

One other point we covered was the dreaded feeding tube. He actually recommended against having one, since chronic reliance on the PEG tube can lead to your muscle forgetting how to swallow. Try it yourself. When you swallow, there are so many muscles involved. Lots in your throat, but others even near your ears and jaw. It’s a complicated process. So he says to try as many ways possible to avoid having a tube, but if you must, force yourself to swallow often with small amounts of water, no matter how much your mouth hurts.

After our conversation about treatment options, we decided to move ahead with the preparation and scan simulation, so when Dr. Woolf and  Dr. Kaplan decide whether my tumor is well or poorly differentiated, all the preparation will have been completed to jump right into radiation and chemo. I was taken in for another CT scan, but this time, I was fitted for my own custom molded radiation mask before the scan. This CT scan will be used to exactly calibrate where to zap me later. They brought out this warm and wet mesh material, laid it over my face and pulled it down tight and held it there until it became hardened. Then the two technicians marked my face and neck with pens, took various measurements and then pulled my new mask off.

My radiation mask and x-ray

Then I got my tattoos… Two very small pin dots on both sides of my jaw line that will apparently be there forever. Cool

When we were done, I took a quick photo of the computer showing the CT image of my skull and of the new radiation mask. All in all, a very productive visit. I’m scheduled to start radiation 5 times per week on the 12th of Feb.

Let’s GO!

p.s. I’d like to give another “shout out” to my lovely princess Denise. I’m so blessed to have her come along with me on this journey. She’s truly the pot of gold at the end of my rainbow.

Wineroad Gang - 2009

Denise and I spent Saturday and Sunday attending our January ritual in Sonoma County. This will be our 4th year drinking and discovering new wine and winemakers along the Russian Wine Road. The annual event is a three day affair over the MLK weekend with over 100 local wineries taking part and always a lot of fun. This year, the unusual spring-like weather made for a great couple of days in the famous and beautiful Dry Creek, Russian River area of the north San Francisco Bay. Seemed like short sleeve and shorts weather to me and difficult to believe it’s January, when nearly the rest of the country is freezing in record cold weather. Certainly one of the few aspects of living in California that I still like.

We were joined this year by our friends from church and fellow wine lovers, Janet and Daryl Sisco and had a blast driving around this beautiful country. Here is a listing of the wineries we visited this year.

My consultation with my oncologist went well today. I’ve got some great doctors and he was one of the nicest and most informative so far.

Today we discussed the range of treatment possibilities based on the current diagnosis, but ultimately we’re waiting for two doctors to agree on the exact nature of the cancer before a final treatment plan is put into motion. The plan originally was always radiation and chemo, since the tumor was thought to be poorly differentiated. However there is some discussion between my own doctor and the chief of head and neck surgery at Stanford that the cancer may in fact be well differentiated, which would steer us toward surgically removing the tumor and possibly avoiding the chemo and radiation entirely. My pathology results have already been sent to Standford along with the slides and images so Dr. Kaplan can make a final assessment.

So my chemo doctor today told me the standard for chemo treatment is cisplatin and has been since the 70’s. However it is notorious for making you vomit frequently as is well documented in the various cancer blogs I’ve been reading. The stats collected since the 70’s indicate cisplatin and radiation working very well together for patients who are older than me and have other health risks such as alcohol and smoking. A new chemo drug on the scene is erbitux (aka Cetuximab). Stats show similar results as cisplatin, but the stats for men in my age group with no other health problems are inconclusive. Probably about the same, but the data to support this conclusion is simply not strong enough. I’ve also learned that erbitux is extremely expensive. Not sure if that has any bearing on which way I end up going or not. I guess it’s ultimately up to the doctors and my HMO. Anyway, today my doctor was honest in saying because I’m still fairly young and in good health he would probably recommend throwing the book at me, meaning moving ahead with cisplatin.

He also mentioned that cisplatin increases the effect of radiation, so heavy sores in the mouth and an almost inability to eat for a while would occur. So he said having a PEG tube installed early would help to keep my weight up during the time I’m not able to eat. Possible dental problems and dry mouth forever are highly likely. Lovely.

Nothing more for me to do here until Dr.’s Kaplan and Woolf agree on a course of action. I’m starting to root for surgery. I also have a consultation with Dr. Jones, the radiologist, on the 23rd of January. Hopefully we’ll have a final treatment plan in place by then.

So I’m in good shape, living normally and the pain in my mouth is completely manageable with Aleve. Evidently I still have some time before things begin in earnest. Yippee!

A couple good resource links I got from the doctor today.

www.nccn.org The National Comprehensive Cancer Network

www.cancer.org American Cancer Society

www.cancer.gov The National Cancer Institute

And one I found on my own, concerning clinical trials of Cetuximab

http://www.cancer.gov/clinicaltrials/results/head-neck-cetuximab0604

I’m starting to get the timing right with the advil, so today was pretty much pain free. And that is a good thing (for obvious reasons), because I had a ton of work to catch up on at Key today and the rest of this week.

Been reading a lot of other blogs over the last week and starting to get a bit alarmed at the weight loss other folks are having near the end of radiation and shortly thereafter. I’m reading about losses ranging from 12-50 pounds over a period of 3-4 months. UGH. I can’t imagine losing that kind of weight. I’d be back lower than my weight in high school. Geez.

Here are some helpful blogs for various tonsil cancer survivors.

http://www.users.globalnet.co.uk/~raphaels/

http://derekparis.blogspot.com/

http://www.howstom.com/

http://doubleablog.wordpress.com/

http://tonsilboy.blogspot.com/

Rockville Park, looking toward Twin Sisters

Went with some friends and the kids on a day hike over at Rockville Park, near Cordelia, CA yesterday. We’re having some real nice warm weather right now (supposed to be 72 today!), so outdoor adventures are great while the weather holds. This time of year all the hills turn a pretty green shade of green, so the good weather and beautiful scenery makes for wonderful hiking. Only had my phone with me, but the photos are still pretty good.

I spoke to Dr. Woolf by phone and he told me the slides, pathology and images were at Northbay and someone was supposed to have called me to pick them up and take them with me to Stanford yesterday. Oh well. Never got that call. Anyway, the slides weren’t really necessary and the treatment remains the same apparently.

Dr. Woolf will set up the radiation treatments on Monday and they’ll start soon after that. One to two times a day, probably only one though. Dr. Kaplan at Stanford recommended a radiologist named Dr. Chris Jones in Sacramento, and Dr. Woolf also felt this would be a good choice. Woolf also told me Dr. Jones has an associate’s office here in Vacaville where I could be treated. Which would greatly reduce my trips back and forth.

Still feeling pain every day and Advil continues to be my close friend.