#18508 08-29-2005 12:49 PM | Joined: Aug 2005 Posts: 2 Member | | Member
Joined: Aug 2005 Posts: 2 | I was diagnosed with adenocarcinoma in the left maxilla in Dec'02 and had a resection of the soft palate in Jan'03. There was no chemotherapy or radiation, as the surgeon said this was not affective on this type of cancer. It is considered very rare, being 1% of all oral cancers. In Feb '05 cancer was back and in March I had a partial maxillectomy. I don't know what the medical term for it is, but the surgeon also went up under my lip and through my nose and took out my sinus cavity. Again, no chemo/no radiation and then we discovered there was no margin so I elected to have more resectioned NOW as opposed to later, and had more surgery 2 months later. Recovery was brutal and I have since lost 40lbs. I am wearing a temporary obturator. It fits poorly and chewing/eating food is not a pleasure! I find that i am sensitive to all foods that have any kind of spice, seasoning, flavoring of any kind. Worst of all I can't eat chocolate anymore. I would like to know if anyone else has this type of cancer and/or if anyone has experinced the obturator with the food problems. Will it ever get better?
Lisa Frock
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#18509 08-29-2005 03:04 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello Lisa, Welcome!
I do not have direct answers for you but there have been several here with the same cancer and several using an obturator. Hopefully they can answer your questions.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#18510 08-30-2005 10:16 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hello Lisa
I am so sorry you are having such a rough go of it.
Hopefully you will hear soon from some of our members who can actually help you through this.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#18511 08-30-2005 02:40 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 Lisa,
Sorry, I can not answer this one. But a question. You seem to be exeriencing the symptoms of all us who have had radiation due to loss of saliva. Do you have loss of saliva? Did they remove any of your saliva glands during surgery? Do they think that maybe Salagen might help you?
Spicy foods and loss of taste are things us people who have had radiation have to live with for a while. Since you had no rads, I wonder why you are having this problem. Try hot chocolate or hagan dais dark chocolate ice cream to get your chocolate fix. If you can still taste it, they will work. If you can't, keep trying. Hope you feel better.
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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#18512 08-30-2005 03:05 PM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2004 Posts: 188 Likes: 1 | Lisa,
If you go to the top of the page and click on "search", then type in the key word "obdurator" you'll see a couple of threads from past postings which may help.
Good health,
Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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#18513 08-30-2005 03:40 PM | Joined: Mar 2002 Posts: 4,918 Likes: 71 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 71 |
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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