We are moving along slowly. I anticipate starting my radiation the week of the 21st of September if not slightly before. Thus far I have four appointments next week. I meet with the dental oncologist on Tuesday the 8th. I think he will be telling me what I need to do to protect my teeth, what toothpaste to use, fluoride treatment, etc. On the 10th, Thursday I have a Simulation appointment. I believe this is where I get measured for the mask I will be wearing during the 6 1/2 weeks of radiation. I'll have more about this mask in later posts. On Thursday the 11th I go for patient education where instructions will be given as to the therapies I will be undergoing and I'm sure I will have an opportunity to ask many questions. My other appointment on that day is at the Head and Neck Planning Clinic. I'm guessing that I will be given a calendar which will list time, dates and procedures.
The day before yesterday, an interesting thing happened. My oncologist, Dr. William William (yeah, that's really his name) called. He asked me if I wanted to participate in a clinical trial. Previously I was told that in addition to the radiation I would also have an additional therapy. It is something called C225 or Erbitux. This is a little extra something that is administered by infusion once a week for the duration of the radiation. It is an antibody which is a new type of "targeted" cancer therapy which starves the bad cells without harming the healthy cells. But I digress. The new protocol which was offered to me is called ZD6474 (Zactima) This is a phase one study of a antibody that has been used effectively in treating lung cancer. This is the first time it is being tested for head and neck cancer. It limits new blood vessel growth as well as starving the bad cells. This is administered in pill form and is to be taken daily for eight weeks and supposedly has fewer side effects than the Erbitux.
We all know that there is no such thing as a free lunch and that is definitely the case with Zactima. The pharmaceutical company is AstraZenica and they require a bunch of nasty tests, the keeping of a diary, two years of follow-up study, etc. They do pay for the pills and some of the tests but I kept hearing the refrain of an old song from Tennessee Ernie Ford in the back of my head,"...I owe my soul to the Company Store"
Dr. William told me he would have his nurse call me and go over the information. She did call and did fax over 21 pages of information. She told me that I was offered the last slot in this arm of the protocol and she needed to know very soon weather or not I was going to participate. I needed to have further discussion with Dr. William. He called me at 9:15 yesterday morning. One of the things I really like about him is that he returns calls. I wanted him to tell me what I should do. I even sked the great question I had formulated at 3:05 A.M. "If your father was diagnosed with the same cancer and offered the same alternatives as treatment, what would you as a son and a specialist in the field recommend?" Of course, he didn't provide an answer. He said it was a tough question and he didn't know what he would advise. Riiiight!
I reiterated that he told Sally that my kind of tumor has a good prognosis and that I will get well; that this is one cancer that will respond to treatment very well. He agreed with this statement. He told me he felt radiation alone would be enough to cure me and that anything else was just a bonus, the icing on the cake. He felt the outcome would be good. He said the pros for going into the clinical trial was that the side effects would be milder and that it was a pill vs. an infusion. I kept hearing "I owe my soul to the company store." I finally told him I was not going to participate in the protocol opting to go with something that has been proven. He did say my choice was a good one.
So, there you have it. Another day in the life...
Friday, September 4, 2009
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This is my first comment... It is Nicole, Julie's friend, and I just wanted to put it out there that I appreciate the updates on how you are doing and I am praying for you.
ReplyDeleteIt sounds like you are making the right choices for you and if there is anything I can do in the future to make it easier please let me know. I know there isn't much I can do but I could bring over some meals or possibly give you a ride if you ever need it. I have been known to send cards so keep your eyes peeled. Just let me know how I can help and know I am thinking about you.
Nicole
Charles, my name is Kelly Bolin. Your daughter Julie worked for my father for a number of years. I learned about your cancer the hard way, as I went through the exact treatment a year and a half ago. I will say that the next six months or so will be very difficult for you and your wife. There is just no way to sugarcoat that. However, I am living proof that the treatment works. I am now almost completely back to (new) normal. I still have problems with my saliva glands, and that is probably permanent, and I am still 40 pounds lighter than I was when it started. Otherwise, all is well.
ReplyDeleteIf I could give one piece of advice, it would be "don't fear the feeding tube." I was told this many times, and I completely agree. It will make your life so much better.
I wish you luck in your treatment. Please call if you have any questions. It helped me to speak to others in the same position (713 960 8956).
Take care. KB