Hi Guys. I have found myself in the midst of a recurrence and I, along with my doctors, are in the process of trying to formulate a treatment plan. I would appreciate any constructive comments or suggestions that may help me think of things I may not have considered or been aware of. In any case, the bad news: I have local recurrent disease with a 2cm tumor at the base of my tongue just above the larnyx. This was confirmed via biopsy last week. No metastasis have been noted and a chest xray shows my lungs to be clear. The location of the tumor deep in the base of the tongue is part of what makes this so problematic. The surgical salvage protocol calls for the complete removal of both the tongue and the larnyx. Besides the extremely debilitating nature of this surgery, it only offers a two year survival rate of 12%. I'm not a fan of this solution. I met with my radiation oncologist yesterday and he was not a fan of re-irradiation either with or without chemo. His primary concern was that the cancer already survived chemo and radiation and what we would have left would be the most robust cancer cells of the lot. This along with the potential side effects of re-irradiation cause him great concern, although he said he would do it if I decided I wanted it. He thought the best chance of success was surgery followed by radiation, which takes us back to total debilitation and only 1 chance 10 for two years. I meet with my medical oncologist tomarrow and my surgeon again on Friday. The feeling I'm getting from my medical team is that the situation is very grim without much hope. I know I am too close to the problem to be thinking completely clearly. I would appreciate any suggestions, esspecially if they involve a newer approach to treatment. Thanks!
Brett,
I don't have any personal advice as my case is/was much different that yours but I do know that there are many people here pulling for you and willing to give you their personal insights and advice. I'll keep you in the thoughts and prayers of our family.
Dave
Brett,
Are you at a major comprehensive cancer center? Those are the best places to be and all may have differeent opinions.
Praying for you.
Leslie
Thank your for you kind words and prayers. I was initially and I am currently being treated at M. D. Anderson. I have been researching Photodynamic Therapy (PDT), which looks promising. I'm stilling hoping for other ideas and frank discussion. Thanks.
Brett;
Keep a positive attitude and try not to be overwhelmed by all the information and choices thrown at you.
I will be praying for you as well
Darrell
Brett, I can only offer prayers and they are on their way. Amy
Brett,
Wishing you fair skies and following winds, I hope you find what you need to make life good again.
Andrea
Brett
Hang in there, my hubby`s original Dx and yours are very similar.
I wish you well.
Marica
Brett, there's always hope in these situations. My thoughts and prayers are with you. God Bless, Carol
Can't think of what to say but to echo the positive thoughts and prayers the others have given. We'll be with you - - and our collective strength will mirror the aggressiveness of your action in fighting this.
All our best
Tom and Nicki
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
Thanks everyone. My medical team and I have agreed that the phase-II study I spoke of in my earlier post is the best option for me. The plan calls for me to get started Wednesday. Yeehaaa -- back in the fight. So long naturally curly brown hair.
-Brett
Good news Brett....keep looking up!!! You are in my thoughts and prayers....Carol
Hello Brett,
I think you made a good decision for your case. The quality of life issues would have kept me from that treatment. How can they be so sure that the odds were so low for the surgery. Usually they can't give you a definate percentage or much of a time frame.
I am hoping your decision was the correct one and that you receive the intended results. Please take comfort in knowing I and many members will be pulling for you.
Please keep us posted as you start yet another journey. Try and think positive and vent here anytime.
All My Best, Danny Boy
Brett,
I really admire your courage, tenacity and good attitude regarding your recurrence and initial poor prognosis. I'm going through a recurrence myself and I tell ya, the attitude is the first thing to go.
Keep doing what you know is the right thing-researching, taking an active part in your treatment, and allowing these wonderful folks in this forum to share their own personal experiences they may be sharing the best possible thing for you-for ALL of us-HOPE.
God bless you and keep on posting, buddy!
gordon
Brett, I just wanted to add my words of encouragement and support...
Congrats on pushing for more options...I think the fact that there is so much contradictory atitudes, pronostications, and treatment plans from differing doctors adds to our inability to make sound decisions...
Good luck with the Tarceva, maybe you'll be paving the path for more of us in the future
Keep your chin up!!!
Latest update on Tarceva:
WEDNESDAY NOVEMBER 02, 2005 Tarceva Gets FDA Okay for Pancreatic Cancer
SOUTH SAN FRANCISCO, Nov. 2 The FDA approved Tarceva (erlotinib) today as an oral therapy for advanced pancreatic cancer in combination with Gemzar (gemcitabine) chemotherapy, Genentech and OSI Pharmaceuticals announced.