#16792 01-04-2005 05:10 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 |
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#16793 01-04-2005 05:49 AM | Joined: Jan 2005 Posts: 94 Senior Member (75+ posts) | OP Senior Member (75+ posts) Joined: Jan 2005 Posts: 94 | Ed, I grew up in Washington state, just a few miles from my new home. Before I moved to California (a 23-year interlude), I'd never eaten anything spicier than poached salmon.  My Mexican neighbors were more than happy to introduce me to a new world of flavours. I'm sure it gave them a laugh or two as I learned the difference between Jalape
SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
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#16794 01-04-2005 07:51 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Ken,
I had to wait quite awhile before I could handle moderately spicy foods, but I finally got back to the point where I could eat medium grade Thai curry and Mexican food -- I still can't tolerate the hottest stuff, but there's enough of a range of good food that I can enjoy. Like you, I've come to rely on a variety of seafood since it's readily available here and generally easy to eat (last night it was catfish with a lime/cilantro/Caribbean spice sauce).
I also had field radiation and lost some salivary function (but not all of it). For the past fourteen or so years I've been taking 3 doses of Salagen daily, which gives my saliva a much-needed boost, and more recently I started using Biotene mouthwash and gel, which seem to be helping as well.
Hope you continue to see improvement bit by bit. Happy eating!
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#16795 01-04-2005 10:10 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Hello Cathy Could you explain to me what Salagen is? It is probably known by a different name in Oz and it sounds like I could use it. Love from Helen 
RHTonsil SCC Stage IV tx completed May 03
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#16796 01-04-2005 11:35 AM | Joined: Jan 2005 Posts: 94 Senior Member (75+ posts) | OP Senior Member (75+ posts) Joined: Jan 2005 Posts: 94 | Helen, Wouldn't you know it? Salagen has its own website. http://www.salagen.com/channels/1.asp?id=21 This is the first I've heard of it, but I've been using Biotene since shortly after the first surgery. Ken
SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
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#16797 01-04-2005 11:39 AM | Joined: Jan 2005 Posts: 94 Senior Member (75+ posts) | OP Senior Member (75+ posts) Joined: Jan 2005 Posts: 94 | Cathy,
The catfish sounds delicious. If you're able to eat a "Caribbean" sauce, I am encouraged.
I have been able to eat a mild chili recently, so I must be heading in the right direction. It wasn't long ago that even the mildest chili would have sent me through the roof.
Ken
SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
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#16798 01-04-2005 11:48 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Thanks Ken
I use Biotene toothpaste etc but these Salagen tabs seem to encourage saliva. Another question for the doc... Love from Helen
RHTonsil SCC Stage IV tx completed May 03
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#16799 01-04-2005 12:11 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Helen, There have been discussions of Salagen use on the board before. It can make you prespire rather badly if you take too much. It comes in various doses and you can take 3 to 6 tablets a day. I took it for about 3 years. If taken in an environment with very high humidity and heat, persperation can be unbearable. Takes a while to see what dosage is correct for you.
Another question of ask your doctor is whether they removed any of your salivary glands. This will affect how well it works.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#16800 01-04-2005 12:19 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Ken,
I have been meaning to say welcome, hello and congratulations on the 2 year anniversary. Onward and upward to that 5 year mark and more.
Boy, that is some view. How many millions do I need to purchase a shack in that paradise? Currrently 'knockdowns' at the Jersey shore 3+ blocks from the beach are going for $400-$500,000. Can't imagine what a view like that on an island out there would cost.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#16801 01-04-2005 12:24 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Helen,
Salagen is a pill version of the drug pilocarpine, which apparently has been used in drop form for many years to treat glaucoma. (I guess the glaucoma patients found that one side effect was that they salivated a lot, so someone thought about using this for people with dry mouth problems.)
Eileen is right that if you use too high a dose, you can perspire heavily. I use 5mg three times a day (and with some experimentation I've found that I have less of an increase in perspiration if I take it most of the way through the meal, rather than on an empty stomach).
I'm missing some salivary glands, but evidently have enough left that function to some extent, so the Salagen gives them a boost.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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