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Recent diagnosis rt lymph node

dmcwethy
Posts: 1
Joined: May 2004

Just found out I have T2N2bMo squamous cell cancer in tonsil and right lymph node. Met with oncologist today, who proposes radiation and chemo, followed by surgical removal of whatever remains. Does this sound right?

I see people indicating dry-mouth difficulties after treatment. Any other side effects I should anticipate.

Any good web site recommendations for those of us new to the disease?

Thanks for the help...Dan

tlmac
Posts: 272
Joined: Feb 2004

Hi Dan, My 80 year old father received the same diagnosis back in March. Because of his age and general frail health, the oncologist determined chemo with radiation would be too toxic so he's has 7 more radiations left of a 7 week (5 days a week) plan. Oncologist will monitor him and we may follow with chemo.
All things considered, I believe he's done prety well. Dry mouth has been uncomfortable but a bottle of water usually relieves it for him. The hardest side effects have been loss of taste buds and general fatigue that drains him of energy. He stopped eating at all after 20 radiation treatments and began to lose weight rapidly. We elected to have a feeding tube surgically implanted in his abdomen. That procedure, done by a gastroenterologist, took only 15 minutes and has been a life saver. He receives liquid nutrition 3 times daily and is regaining strength. It doesn't stop him from eating or drinking anything he wants but without taste buds, he has no desire. Nearly everyone going through this treatment loses weight, between 20-50 pounds on average. Not everyone requires a feeding tube. We were told to expect his thyroid gland to be damaged but so far that hasn't happened. If it does, he'll require medication. We were also told of severe sore throat which has never really been a problem either. Swallowing was difficult for him but never unbearable or impossible and he swallows his daily pills without problem. His neck skin became pretty badly burned, like he'd been in the sun too long. They gave us the necessary creams to treat it and he doesn't complain much, even when his skin began to peel.
Sorry to say this particular board isn't the greatest at answering questions but I'll check in daily and share any experiences we've had if it will help you. Best of luck.
terri

robh
Posts: 8
Joined: Oct 2003

Hi Dan,
My name is Robert Hamilton. I am a 41yo WM that had/has SCC right tonsil T1n2am0. I was diagnosed in oct of 03. First things first. Its not a death sentence but it is very serious. There are a few things you need to know. First and foremost, make sure you get the best help you can ragardless of the money. You can always pay the doctors/hospitals a dollar a week if need be. You cant pay anyone back if your not around any more. I am not sure where you live but I can tell you a few things from my experience. There are hospitals that specialize in the treatment of head and neck cancer. THAT IS WHERE YOU SHOULD GO!
Sloan Kettering in New York,
MD Anderson at the University Of Texas,
and the University Of Chicago. These three hospitals are leading the world in survival rates. I chose the University of Chicago due to the fact that I live in Northern IL. I would have gone to Brazil if I thought a hospital there offered the best help
Here is what I went through:
On 9/2/03 (My ten year wedding anniversary) I was diagnosed with SCC right tonsil primary 1.6cm, 1 lymph node met 3.0cm. Tonsil and lymph node removed surgically that day. Thats how I was diagnosed.

Induction Chemo ( To remove any cancer cells that might have traveled beyond my tonsil/lymph node):
8 weeks (once a week on Thursdays) utilizing Taxol (Every Thursday) and Cisplatin (first week and last week only) starting 10/10/03.

Chemo/Radiation starting 12/14/03
8 weeks (4 on 4 off)with 5FU (24 hour a day IV drip Sun-Fri, on weeks only), Hydroxyurea (1 pill a day, on weeks only), Iressa (1 pill every day for the next 2 years), IMRT (twice daily Mon-Fri for 4 on weeks).

The hair on my head did not fall off (even though I shaved my head anticipating it's demise). Radiation burns on my neck and one sore on my tounge was as bad as it got. I finished my treatment 2/13/04 and feel GREAT! I am back at work full time and trying to adjust to the dry mouth and taste changes but thats nothing I am alive thats what matters. This program is producing local control rates of 93% and distant control rates of 90%. I did not get sick once. I was weak as hell but made it through and I am fine. I beg of you to at least talk to one of the hospitals. Dr. Everett E. Vokes, Daniel J. Haraf, Kerstin Stenson
University Of Chicago
www.uchospitals.edu/
Dr. Vokes has a nice article in the latest SPOHNC newsletter as well.

Also Dr. Bruce Brockstien, Dr. Barry Wenig Evanston/Northwestern Health Care Evanston Hospital, Kellogg Cancer Center, http://www.enh.org/

Dr. Gary L. Clayman, Dr. Merrill S. Kies University Of Texas MD Anderson Cancer Center, http://www.mdanderson.org

Dr. Jatin Shah, Sloan Kettering Cancer Center, http://www.mskcc.org/mskcc/html/44.cfm
You only have one chance to do this right. If it comes back your survival rate drops to like 20%. I will help you in any way I can. Just drop me a line. My e-mail is rob@exmt.com. Also, the Oral Cancer Foundation has the best web site and patient/survivor forum. It also has excellent resourses and information. It really is a great place to turn to.

walkingman
Posts: 1
Joined: Jun 2004

just read your replt and need info. My name is Michael tardiff, 50 years old and have squamous cell carcinoma. It started in Jan 2002. I had similar theraphy as you, neck disection on left side, once a week chemo and daily (Mon-Fri)radiation. I had to have a feeding tube to eat for 7 months. Things went great after while. I even was told to be cancer free. But, in september of 2003 cancer came back in my right shoulder and I had 25 radiation treatments . Then I was sent to chemo again and spent three day at the begining of each month having chemo. Now after six months I am awaiting staging. In your message you made note of statistics dropping 20% Please explain. my e-mail is fleetaft@yahoo.com. I could use the support and I promise to write back this is quite serious with me and my first attempt to reach out.
thank you
michael

Hbonner
Posts: 2
Joined: May 2004

Hey Dan,
I was at T3Nn2 Base of tongue. I had 35 treatments of Radiation and 6 days of Chemo. One thing that saved me was a peg tube installed to feed me. After two weeks, everything tasted like chemicals, even the boost. If the Doctor suggest the PEG. Do it!! I've seen a lot of guys get sick because they could not get the nutrition. I still have the PEG and finished Radiation 8 weeks ago. I'm now ready for surgery to remove the lymph nodes. I never lost more then 10 lbs.
hbonner220@aol.com

dyeaw
Posts: 2
Joined: Jun 2004

Hi Dan, I'm at work so don't have all the info handy but you can read about my husband's battle on our website - http://www.hncancer.com and click on OUR JOURNEY. Need to do another update but it's fairly recent.

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