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mucoepidermoid carcinoma

denice
Posts: 1
Joined: Apr 2003

I am looking for surviors of mucoepidermoid carcinoma of the salivary gland(low grade)

phulpagars
Posts: 1
Joined: Apr 2003

Hi Denise,
This is Stanley who had a massive surgery done on April 3rd, 2003 to remove the cancer. I'm just trying to heal while undergoing hyperbaric oxygen chamber treatment. This is supposed to help with my healing as I had excessive amount radiation given from Oct. 1st to Nov. 21st of last year, which has destroyed a lot of things in my mouth. I've had five sessions of that treatment and have 25 more to go. They are 90 minutes long. I have an awesome wife and two great children (a boy and a girl), and a great church that has helped and continues to help me a lot. Enough about me, please tell me more about you.
God bless you, Stanley

sgendrolini
Posts: 11
Joined: May 2003

hi Denice,
My husband is not yet a "survivor" I guess, as he is still undergoing treatment - his mucoepidermoid carcinoma is in his salivary gland (parotid) and it was only discoverd a few weeks ago.
How are you doing - where are you at with your treatment?
Sara

blitzbob`
Posts: 17
Joined: Jan 2003

Hi denice
dont know if this is any use to you but i had small red mark under my tongue I was fit healthy when the dentist found it asked if iwould go for consultation agtreed knowing there was nothing wrong with me Fool They diagnosed mucoidepidermoid salivary gland minor I was bullied into surgery no rdaio or chemo but I regret it because I was confudent there was nowt wrong with me and at 62 felt it would not spread quickly anyway one pf the team told me they had a job to find it which leads me to believe it either was not there or was casued by a loose tooth Ian still furios about it all but I can tell you that if its low grade it will only grow very very slowly and generally does not spread to other glands

zimbo
Posts: 11
Joined: Apr 2002

My partner was diagnosed with stage IV (actually since downgraded to stage III) mucoepidermoid carcinoma of the parotid gland in January 2001. HE conpleted extensive surgery, radiation and chemo. The original surgeon did not remove all the cancer. We did go to a major cancer center where they did surgery that was considered not possible by the original surgeon. They removed part of his jaw, mastoid and lots of facial tissue. He also underwent six rough weeks of radiation and eight months of chemotherapy. He completed his last chemo February 2003. He is scheduled to undergo some re-constructive surgery July 1. and is doing well. IF he had followed the original surgeon's instruction he would have only completed radiation with the majority of the tumor still intact. Even though many said that chemotherapy did not work well with this type of cancer, his oncologist was very aggressive in his treatment. His recent CAT and PET scans have been cancer free.

cardan
Posts: 5
Joined: Jun 2003

I am a survivor of mucoepidermoid carcinoma but mine was classified as Intra-osseous. I had a salivary gland tumor in my jaw bone. A cancer so rare it happens once every 10 years and a cancer so rare no one has any info to share with me..but ask away? Maybe I can help someone out there. I have had surgery and radiaton hell. Now am looking into dental implants...cardan

colleen0301
Posts: 1
Joined: Feb 2004

Hi Denice. I had low grade mucoepidermoid carcinoma on the roof of my mouth. Was diagnosed 11/24/03. The only treatment I needed was surgery which I had a week later. It left me with a huge hole in the roof of my mouth which is almost totally healed. I consider myself lucky. Although aggressive treatment was not needed in this case I would be happy to share any information that I have with you.

jackie7964
Posts: 16
Joined: Jan 2001

Hi, Denice!

I'm a survivor (3.5 years) of low/intermediate grade mucoepidermoid carcinoma of the minor salivary glands in the base of my tongue.

Hopefully you're doing all right? Is there anything in particular you're trying to find out? Or just moral support? Either way, I hope you find it.

Take care,

Jackie

joanwager
Posts: 1
Joined: Oct 2004

Jackie,

I had mucoepidermoid carcinoma 11 years ago in my right gum line with the only treatment surgery and reconstruction of my jawline. I now have found a tumor in the base of my mouth which I am having checked out next week. Can you tell me what your treatment was, i.e. surgery, radiation, etc.? Thanks for your imput.

HarveyT
Posts: 2
Joined: Oct 2004

I'm looking for anyone who has beaten the survival odds (about 12 months) with mucoepidermoid carcinoma of the salivary gland WITH significant distant metastasis. I was diagnosed in May 2004 based on lumps in my neck and by that time, it had spread to the lungs, liver and many bony areas. Surgery and radiation were ruled out as options due to the aggressive spread. I've had 18 weeks of chemo (carboplatin + taxotere) which slowed it a bit but now it's spreading quickly again. My oncologist offers no real hope and gives me 3-4 months. Anyone out there with my condition who has had success with anything else? Help.

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