maureenp
Member
Member # 2691

posted January 20, 2006 03:52 PM
MY HUSBAND, 47, WAS JUST DIAGNOSED WITH STAGE iv TONSIL CANCER WITH TWO ENLARGED LYMPH NODES. hE WILL HAVE A pet SCAN AND CAT SCAN OF HIS CHEST NEST WEEK. At this point his doctor is recommending chemotherapy and 6 weeks of radiation. Any advice?
Posts: 1 | From: New York | Registered: Jan 2006 | IP: Logged

Gary
Patient Advocate (300+ posts)
Member # 457

posted January 20, 2006 05:03 PM
Hi Maureen,
you should start your own thread by pressing the "new topic" button and starting over, otherwise it will be lost in Frankies thread. I had the exact same treatment and I am a 3+ year survivor. I did not have lymph node involvement however. I am surprised that they are recommending a treatment protocol before all of his tests are completed. Are you going to a CCC?

Frankie the "metal mouth could be the chemo as well, but few here have been able to tolerate Amofostine. You're going to lose your sense of taste from either the radiation and/or chemo temporarily.

Zofran is one of the best antinausea drugs, I used compazine suppositories when I was throwing up too much to keep pills down (and I just had Cisplatin). I also smelled like a chemical waste dump for a few weeks after the chemo was over.

If you are getting IMRT I would ask them directly, what the amount of benefit you will achieve from Amofostine. I didn't have it and have quite well recovered salivary function. Standard radiation (XRT) is another matter.

--------------------
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm tumor, right tonsil, Stage III/IV, T3N0M0
Tx 1/28/03 through 3/19/03, Cisplatin Chemo x2, IMRT x33(81cGy)
Posts: 1582 | From: San Francisco CA | Registered: Nov 2002 | IP: Logged

Maureen - Happy to meet you. You'll get LOTS of advice on this site. I'll start:

Cancer treatment is a business, operated by highly specialized, highly trained people. There are many, many kinds of cancer and not every cancer treatment person can specialize in every type. Your first task is to find docs who have treated THIS type of cancer before (head/neck cancer). Its a bit different than many of the other types.

You and your husband are the 'customers', the 'purchasers' of this treatment. Don't buy the first thing they offer you. Don't do all your shopping in one place. Get multiple opinions - at least two. Get those opinions from people who know this particular type of cancer. Many good docs treat it, but truly lack the experience and expertise to treat it well.

Don't let your fear of the big "C" frighten you into rushing to treatment without those other opinions. There are many good ways to treat it. Ask your doc to explain them all to you - not just the way s/he is recommending. Have your doc tell you the pros and cons of each of the choices and there are quite a few.

What surgery? Why? Does he NEED surgery? (many of us never had any). What drugs are recommended for chemo? Why those drugs? Radiation? What type? How much? Why?

Long term cancer survivors are REALLY good question askers. Take notes. Make them explain things till you get it. Be directly involved in every phase of the treatment, every decision. Assume nothing. Allow your docs to assume nothing. The really good docs can talk you through their choices and why. They don't object to multiple opinions - it actually helps them.

Be scared. Get mad. Get organized. Don't panic. You can beat the 'beast'. We have. Read all the info in the blogs on this site - you will learn a bunch, and it will make you a better 'consumer' of whatever treatment you finally choose. Ask questions here on this site - there are no stupid questions about cancer.

There are many people here who will and can help you. Come here often. Read. Post your questions, your worries, your fears, your anger here. We will understand as perhaps no one else can. Get past the paralyzing fear of the diagnosis. You can beat the beast. Fight hard. Fight smart. Be strong. Tom

maureen,

Hi,
Welcome.

I was 41 at diagnosys. I had the same primary site as your husband. 1 met to Lymph Node though.

Sounds like the standard treatment protocols that have been established by Comprehensive Cancer Centers around the country is what is being recomended to you. They can be very effective at fighting this disease.

You can read about CCC's here on this beautiful web site. Of course we are all avalible to talk anytime. Drop me a line for anything.

I agree with Tom. I searched all around the country and studied wich CCC's were getting the best results. I have a family (5 Kids) to raise and did not want to die on them quite frankly.

Finally, I chose a University Hospital (University of Chicago) here in IL.

You have some excellent options in CA as well. City Of Hope comes to mind. UCLA also.

Anyway, whatever path you choose I wish you the best.

You have a long road ahead but it goes fast. Fight, Fight, Fight. Stay strong for your husband and god bless.
Robert