Robr: We have similar situations, so thought I'd jot you a short note. I had a stage IV tumor in my #2 Lymph node (3.5cm)which we found out later had migrated from my right tonsil. The tonsilectomy on 11/19/03 was the telling blow as they found a 2.0 cm tumor there after removal. Interestingly enough, the ENT didn't find it even after removal. Anyhow, had 37 rad treatments on lymphnode and neck, 3 cisplatin treatments during the rad and just had my modified radical neck dissection Tuesday, 5/4/4.I sounds like you came through OK which is a good thing. Whatever happens, we get through it and on to a better day. That is the primary message on this board. Welcome and keep talking with us. Rgds, Kirk Georgia

Hey Robert. Too many things to respond to here. So I'll respond your original post. I've done alot of research on the Internet and elsewhere as well. Probably motivated by the same thing: fear of recurrence. You're right, most of the data on the Internet is very out dated in addition to being pretty dismal. Since I'm part of a post-treatment chemo-prevention study, I had a chance to look at some of the previous study data (none more than four years old) which supported the study in which I am participating. The stats in these studies were only marginally better, but the size of the sample groups were rather small. I would certainly be intested in seeing data you might have come across that paints a happier picture.

Since I was ranomized into the control group for my study, I don't get any of the meds. As far as I know, Acutane is the only thing that looks promising as a preventative agent. Unfortunately, Acutane is not approved for perscription except for acne. With all this in mind, I put myself on a supplemental regimine -- which I would be happy to share with anyone who's interested (but we'll need to start a new thread).

Anyway.....welcome aboard.

-Brett

Brett,
I'm very interested in what you know about Acutane as far as chemoprevention. If it is still there, I started a thread on this when my husband first finished treatment about a year ago. I actually brought the subject up to our radiation oncologist (based on some internet research I had been doing) and he gave me an article to read from one of his journals that make it sound like the isotretinoin (sp?) benefit was pretty iffy. I'd love to hear more. Though, as my husband is now almost 14 months post treatment, it may no longer be an option for him.

Thanks,
Anita

Brett,

I would be interested in any data or information on Accutane. I would love to hear about your maintenance program.
I had created a post on this site with links to several web sites and a current report by
Dr. Everett Vokes. It is in the introduce yourself section under "Studies For Head And Neck Cancer" Here is the link to the vokes paper. http://theoncologist.alphamedpress.org/cgi/reprint/8/4/350.pdf

I am currently on a phase II clinical trail utilizing a drug called Iressa. You may have heard of it. It is a EGFR drug. It has been proven to reduce and in some case eliminate tumors in non small cell lung cancer patients. It is FDA approved for lung cancer. It's all over the net. Check it out.

I spoke with my doctor last week and he informed me that he (they) are very hopeful this drug will kill the "fuel" that makes SCC cancer return.
Of the 50 people in the study (most of whom have been in it a lot longer than myself, some just about a year) they have only seen one reaccurance. These are execpional numbers according to him. It is not a randomized trail. All patients are getting the same drug, same amount. This could be, I stress could be a possible solution for some people. I hope it's me.


Talk to you soon,
Robert

My daughter Amy, who is now 21, had problems with Cystic Acne on her back when she was 15 years old. The dermatologist put her on a course of Acutanne. She had her blood drawn steadily and they monitored her closely. The severe depression she went into from the drug was horrible. I know they are doing studies on the depression caused by Acutanne, just wanted to share that information.

Please see my post under Adjunctive Therapy for the info I have regarding Acutane. I'll post more later regarding supplements.

-Brett