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#38780 07-11-2005 12:31 AM
Joined: Jun 2005
Posts: 25
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Hi:
I was recently diagnosed with SCC stage four with primary in tonsil tissue [which was removed] and local spread to the base of my tongue and two at least two lymph nodes. I had posted my background info last week.
I will be meeing tomorrow with both medical and radiation oncologists at Johns Hopkins in Baltimore.
I have been attempting to get up to speed on treaments, side-effects etc. The one question I had at this time was on Mucositis. Specifically what medications/remidies either pre or post treatment have been somewhat successful in reducing the pain, soreness and help in the healing process.

I would like to thank everyone for all the very positive encouragement from my original posting.

Sincerely,
Barry

#38781 07-11-2005 11:20 AM
Joined: Jan 2005
Posts: 108
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Hi Barry; Mucositis can be a real nuisance. It seems to have taken me almost a year to get the stuff that sprung to life after radiation to subside. It tends to flare up quickly, but as time goes on it goes away more quickly as well.
I have used the baking soda mouth wash hourly, the Biotene products (including the Oral Balance Mouth Gel) which were very helpful. Sometimes when nothing works I swished a topical anesthetic for relief. I drank hot drinks..cold drinks, sucked ice cubes, wore ice packs etc!
Other folks will no doubt have more remedies for you and my suggestion is to try everything...you never know which will work best for your mouth.
I still use the baking soda rinse several times a day just to control my oral ph as I have no saliva function now. It's no big deal, I just keep bottles handy if I am home or away. Biotene preparations are a permanent part of my life as well.
All the best to you as you take on this big challenge.
Fran B.


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
#38782 07-11-2005 11:45 AM
Joined: May 2003
Posts: 928
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Posts: 928
Barry
The things that worked for us
A humidifier
Guifesin
Suction machine , we used a Yankuer but there may be a better one out now.
Rolled up sterile pads in gums to soak some of it up.
If I can remember any more I will post.
Take Care
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#38783 07-11-2005 02:49 PM
Joined: Apr 2005
Posts: 2,219
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Barry,

Ask the doc about Palifermin. It is supposed to shorten the duration of mucositis or possibly even prevent it. It is given by IV for 3 days before treatments.

I only read about this in the American Dental Association Newsletter which I receive as I am a dentist.

Please let me know what you find out and good luck.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#38784 07-14-2005 10:18 AM
Joined: Jul 2005
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Hello- just to let you know-my mom saw a Dr. at Hopkins after finding a second tumor in her neck(entangled in her carotid artery)after she'd had surgery and radiation on the 1st tumor. In 6/04,the Dr. gave her 3-6 mos. to live but said she could take an experimental drug-Iressa. She started Iressa in 7/04 and it reduced the tumor so much that by 9/04 it did not show up on a CT scan. She then started to take Iressa every other day. She's still on Iressa and unfortunately now taking it daily because a new tumor was just detected, but we feel that Iressa was helpful- you may want to talk to the docs at Hopkins about it too. Good luck-- Also, St. Agnes Hospital in Baltimore( about 10 min. from Hopkins )has a big Tomotherapy practice , so you may want to check them out. Best to you. Linda G.


linda gordon
#38785 07-14-2005 12:51 PM
Joined: Mar 2002
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Barry, don't laugh, and I do not have stock, but Puffs brand tissues are by far the softest and strongest for wiping the gunk out of one's mouth. I went through a case. The soft part is inportant because by the time you have mucocitis, your mouth is generally pretty darned sore.


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