I began treatment today in a clinical trial. The title is "Phase II Randomized Trial of Surgery followed by Chemoradiotherapy plus C225 (Cetuximab) for Advanced Squamous Cell Carcinoma of the Head and Neck Region." It may be of interest to you if you have had surgery but have not started chemo or radiation therapy. Today I had the "loading dose" of Erbitux, the Bristol-Myers Squibb Company C225. Beginning next Monday and for the following six Mondays (if all goes well) I will have an infusion of Erbitux followed by Docetaxel, the chemotherapy agent. Also beginning next Monday and for six weeks I will have radiation therapy (2 Gy/Day) Monday through Friday. No side effects at this time, but it has been just 7 hours. So begins the most arduous stage of this journey.

Zenda, you will find that the rad treatment is very difficult. You can get through it, though, so hang in there. There is an end to the treatment and recovery and once you start, before you know it, you are in the recovery mode. You are to be congratulated for taking part in a study to improve the knowledge base on this disease. Thank you for your dedication. Hope all goes well.

Hi Zenda,
wow what a new year's - i notice the date of your diagnosis.

You've come through the surgery, so you are a fighter. The radiation is tough (didn't have chemo so I can't address that), but you can do it. I found it helpful to just kind of brace myself for it and figure that was my job at the time - to go through the treatment and battle it out. So, I didn't plan on doing much else and allowed myself to be "sick". The good news is that you are fighting this disease, and while the treatment is rough, you can do it!

We are here as you journey through it.
Best of luck and keep us posted.
Michelle

ps how's the tongue doing? Eating? Speech?
If eating is okay now, eat up and enjoy your favorites (yum... ice cream & whipcream!), because radiation will limit your choices in the upcoming weeks.

Kirk and Michelle: Thank you for your encouragement. I'm a little anxious but ready. I will begin chemo and rad on Monday. No further side effects from the Erbitux at this time, but about 90% of patients do get an acne-like rash on face, chest, back within two weeks so that may be on my agenda.
Michelle: My tongue is still numb on the right side but it has straightened out considerably since the swelling is down. My swallow is much better and with nectars, orange juice with pulp, milkshakes I have no problem. Also doing very well with many foods -- so great to get away from the soft stuff for the time being! My weight is good and I'm in fightin' shape! My speech is a little lispy with "S" because I'm missing a bottom tooth due to the surgery, and if I have phlegm my speech can be a little mushy, but I'm pleased with my recovery and have no problems with communication. I'm seven weeks out from my surgery, so for those with a similar cancer and at the surgery treatment phase there is sunshine ahead. Thanks for asking, Michelle, and I hope you are doing well.

Zenda,

My aunt has been on the Cetuximab for about 6 months now as part of her treatment for fNHL lymphoma, along with a regimen of 4 chemo agents (the CHOP protocol). It hasn't been easy but she is now finishing up.

As Kirk mentioned, thank you for doing what you are to help advance the knowledge of this disease and helping to develop further treatment options.

I am wishing you the best and feel free to ask anything as you travel this bumpy road.

Ed

What a "newbie" I was on March 7 when I began my clinical trial with Erbitux! I finished Erbitux and Docetaxel, my chemo agent on April 22. I will complete radiation April 27 -- just four more treatments. My face absolutely bloomed (due to the Erbitux) with rash, which looks like acne, for about 4 weeks. The other side effect from the Erbitux was dry skin on my fingers and heels which did crack. Aquaphor for my heels and the worst splits on my fingers was effective, and I massaged a sunscreen with SPF 30 into my hands several times each day. I have a bad case of mucositis which wakes me 6-8 times each night: Ultra Soft Puffs with Aloe are the best for mouth clearing. I'm using Biafine RE for my radiation burns and have found it to be effective for soothing and healing. I do have a feeding tube and have maintained my weight. Lost my sweet tooth so I'm probably not taking in as much as I should by mouth to maintain my swallow, but I do drink water and eat ice chips. The "cardboard" food is too much for me to force!

I have come to the Forum frequently to research and to feel that I am not alone on this journey. Thank you for the support, compassion, and practical suggestions you have all provided.

Zelda
I'm 8 months out from surgery, have lost my sweet tooth, BUT not everything now tastes like cardboard, so there is light at the end of the tunnel. GET the rest of your treatment out of the way and then RED WINE still tastes good.LOL.
Sunshine.. love and hugs
Helen