Hello Brett

I can't help with your treatment options question but I am very sorry to read your news. You certainly couldn't be treated at a better center - no doubt they will offer everything they can to you.

Best wishes and love from Helen, you are in my thoughts.

Brett,
What a horrible decison to have to make. You can see my history in my signature.

The one thing I asked for before I opted for the surgery was a PET scan to make certain this hadn't escaped to other areas. I did not want to undergo a total laryngectomy to find out I had termianl cancer eleswhere. They didn't re-irradiate in those days so my only other option was chemo to shrink it. Since I was stage 1, they felt surgery would leave me cancer free and thus far 4 years later has. My situation was much less dire than yours.

Why do they feel your odds are so poor even if you undergo surgery? What is the difference in your odds if you have chemo alone or with re-irridiation and no or limited surgery. And if you make it the two years, what are your long term odds for survival? All questions which they can't answer with accurancy but things I would want to consider before undergoing that debillitating a surgery. Do they think you will be able to talk or eat after all this is done? What a scary set of decisions you have to make. My heart goes out to you.

Keep us posted on what the doctors think and what you decide.

Take care,
Eileen

The hard, cold fact is that if we go with the radical surgery I will never eat, drink or speak again. From the research I've done on this option, it isn't always a return of disease that proves fatal. In other words, the surgery itself along with the resulting disabilities are life-threatening as well. In my mind, this surgery is not an option. Since this new ride started, I have always felt that the best option would come from the medical oncology folks. In fact, I met with my medical oncologist yesterday and after the extreme grim-ness of the radiation oncologist his attitude was like a breath of fresh air. He offered me a phase-II study which involves a 21-day chemo cycle with Cisplatin and Docestaxel along with a daily pill-dose of a new drug that is a EGF(Epithelial Growth Factor)-inhibitor. That new drug is called Tarceva. He said they are experiencing good results with this so far and seemed to think this was just the thing for me and my new tumor. This is the best option I have been offered so far and I'll probably go with it. I plan to make my decision tomarrow when I meet with my surgeon as they want to start me on this beginning next week.

Brett,
So sorry to hear your news. My husband had STage IV BOT/larynx as well. Having had rad 10 years prior he needed to have the surgery as 1st line of treatment, He had total glossectomy and partial laryngectomy, which left his vocal cords but removed epiglottis. So he can speak and they think he'll be able to swallow liquids (thin and thick). Is partial laryngectomy an option for you?
Doreen

Hello Breet,

Sorry to hear the bad news. I hope this new chemo treatment plan can turn things around for you. My prayers and hopes are with you.

Danny Boy

Hi Brett,
That treatment plan is a breath of fresh air after the previous doctor visit. I don't think I would go with a surgery that left me permanently unable to eat or speak either without trying everything else first.

Here's hoping this new trial works for you and you do not have too many side effects.

Take care,
Eileen

Hang on in there brett, try to remain positive hugs and prayers your way best regards .....maz

Brett --

At Hopkins there is a Tarceva trial which is showing a lot of promise -- one fellow had very large "untreatable" mouth/ throat/palate cancer (this dx at another institution) -- and last time we spoke to him his tumors were shrunk almost 75% and he was only 1/2 way through the trial! These new EGFR drugs do not act on the cancer in the same way as conventional chemo (carbo, taxol, etc.) and are a good option for you. The Hopkins trial involves a 15-day induction with the Tarceva (at which point our friend's tumor had shrunk more than 25%) and then Tarceva and cisplatin, plus radiation (so not same as your trial). I think the Tarceva is continued for some time afterwards as well.

Another possible option might be brachytherapy -- there is a woman at Hopkins who had that in NYC -- Beth Israel? -- a few years ago for a tongue cancer and also had a recurrence and is being treated at Hopkins with chemoradiation (tomo-therapy). The precision of the tomo is apparently good enough to allow radiation of the new tumor without delivering much to te area treated previously by brachytherapy. I know that the seeds are used for tongue tumors but not much more than that. It may be worth pursuing this, as her case is sort of the opposite of yours...

Hopefully the Tarceva will do as well for you as for our friend in Baltimore!

Best wishes,
Gail

Hi Brett,

I was just reading about Tarceva in my local paper. A woman here had recurrent lung cancer, a lung removed and so on. The cancer returned 4 years later, and they thought there no hope. Now her tumour is shrinking, after the Tarceva.

This is one link I looked at after reading the article:

http://www.gene.com/gene/products/information/oncology/tarceva/index.jsp

Good luck,

Tizz

Brett,

I admire your determination and research to find the best quality of life and bang for your buck, and wish you the best in your treatment.

Sincerely,
Lisa