oh...sheesh... where to start? I'm taking care of my sweetheart Zeno. He was diagnosised in March with T1N1M0, squamous cell carcinoma, primary tumor in his right tonsil. He had a major tonsilectomy three weeks ago. He's having a PEG put in this thursday, and starting radiation/chemo on May 8th. He's amazing....in gorgeous shape, only 57, handsomely dutch, strong to the edge of stoic, a thoughtful philosophy professor with a drive from childhood to help literally save the planet, analytical with sudden stipes of warmth. I adore loving this man, and even though in the ealy honeymoon of our "us", we are making this cancer into as much opportunity as two smart people can allow themselves . I am an amicably divorced mom with two shared custody and homeschooled kids (12 and 9), improv theater and dance keep me floating, and my part time job is reading and editing for a blind woman.
Our main question of the moment: What is the common chemo protocol for this situation? We are fishing for medical oncological info...
so far it looks like IMRT and rather large doses of cisplatin every three weeks followed by slow drip flououracil every week. Is that typical? What about Erbitux?
Thanks for your attention and any ideas

Hi Thalia,

The approach I used was weekly Cisplatin and Erbitux. My radiation went 6-1/2 weeks so I had 7 chemo's. I also had daily Ethyol shots which are thought to help eventual recovery of saliva gland function (I've got some saliva, so it seems to have helped).

You can browse through the forum posts and see what other treatments have been used (most members put their diagnosis and treatment at the bottom of their posts, which you should consider doing).

If you search through my posts, you will also find more information on my experience.

Best wishes,

Chris

how do I put our dx ect at the bottom of my message?

Hi Thalia,

Welcome. You can put the diagnosis and other information here by going into your member profile under signature, there's a space for it.

Cisplatin is considered a gold standard in many CCC's because it's been around a long time and has a track record. Combining it with 5FU is a protocol that is also used. Erbitux is a recent addition but starting to be used in the primary treatment phase. There are a number of clinical trials on that. It has been more commonly used for treatment of recurrences but it is getting a lot of attention as a promising therapy.

You are quickly going to discover that there is more than 1 treatment protocol so don't let that throw you. Ask about side effects and toxicity for all of them and make your decisions based on that information. We recently went to a HNC patient conference and the oncologist who spoke told us that all chemo is toxic and there are varing degrees of side effects that happen. Some protocols provide a slightly better risk of survival in certain circumstances. He advised us to think about what our personal risk tolerance was versus quality of life issues from potential side effects in making any treatment decision.

No 2 cancers are exactly alike. Location, health, medical history, stage, how aggressive the cancer is, poorly or well differentiated, whether it is extracapsular or still contained in the lymph nodes all factor into this.

For example, Cisplatin caused a high frequency hearing loss and neuropathy in Jack but also had a slightly higher survival rate in long term studies. It had been around longer and was a known quantity so that made the side effects worthwhile for us. We would make that choice again but I want to stress that everyone is different. You should ask about carboplatinum as there is some evidence this may have fewer toxic side effects.

Spend a little time clicking on the links on the home page of the website, there's great information there. You may get answers to some of your questions. Also look at the Getting Through It project posts on this forum and What I Wish I knew.

Whatever you decide just know that you will get through this.

Regards JoAnne

Welcome Thalia & Zeno
You two sound like a great couple. Please read "Halllo, just introducing myself" by Richard Clegg in this forum. I wrote a lot of helpful hints about this website. I'm the first responder to his post. Please take good care of Zeno. We do need someone to "save the planet". Good Luck on your journey. Petey

Thalia,

Editing Signature Line:

It helps the responder to your Post if you include facts about your Diagnosis and Treatment, etc under your Signature. See mine below as an example. To add to your signature go to the top of the screen and click on MY PROFILE. Then click on EDIT PROFILE and scroll down to the Signature Block and type away. Once you add it, It appears every post you make and your questions and even responses are more understandable