mucoepidermoid carcinoma

denice
denice Member Posts: 1
edited September 2022 in Head and Neck Cancer #1
I am looking for surviors of mucoepidermoid carcinoma of the salivary gland(low grade)

Comments

  • phulpagars
    phulpagars Member Posts: 1
    #2
    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
    sgendrolini Member Posts: 11
    #3
    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`
    blitzbob` Member Posts: 17
    #4
    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
    zimbo Member Posts: 11
    #5
    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
    cardan Member Posts: 5
    #6
    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
    colleen0301 Member Posts: 1
    #7
    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
    jackie7964 Member Posts: 16
    #8
    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
    joanwager Member Posts: 1
    #9
    jackie7964 said:

    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

    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
    HarveyT Member Posts: 2
    #10
    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.
  • getting there
    getting there Member Posts: 1
    edited September 2021 #11
    Diagnosis delivered last month August 2021

    Hi all,

    Getting used to the fact of saying I have a low grade, stage 2 cancer. Mucoepidermoid carcinoma ☹️. However soon after had to get used to the fact that I survived Covid too.

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #12
    getting there said:

    Diagnosis delivered last month August 2021

    Hi all,

    Getting used to the fact of saying I have a low grade, stage 2 cancer. Mucoepidermoid carcinoma ☹️. However soon after had to get used to the fact that I survived Covid too.

     

    Well Welcome

    To the forum of the H&N section, we welcome you and congratulate you for your victory over covid.
    And wishing you blessings ahead as you move forward and fight this Mucoepidermoid carcinoma.
    Please update us on your treatment plan and keep us updated on your progress.
    I hope you find sufficient support here as there are many knowledgeable and helpful folks willing to make your journey a little easier.

    Wishing you the best-Take care-God Bless-Russ

     

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #13
    getting there said:

    Diagnosis delivered last month August 2021

    Hi all,

    Getting used to the fact of saying I have a low grade, stage 2 cancer. Mucoepidermoid carcinoma ☹️. However soon after had to get used to the fact that I survived Covid too.

     

    Welcome

    This is sure one old thread but it is still about MEC and that includes me.  Also a low grade on the base of my tongue with mets to my right lymph nodes.  Radical r-neck dissection along with the tumor removed from my tongue. Rads only and cancer free since 2012.  Welcome to the group!

  • LeoS2323
    LeoS2323 Member Posts: 160
    #14
    MEC Survivor Too

    This is an old thread! I'm another MEC survivor, in fact I originally came on around the same time as Tommy (Hey Tommy good to see you around still my old bus mate!). I will be ten years cancer free in March 2022.

    I know it was always a boost to see the good stories when I was going through my initial diagnosis and treatmen, and I think it's fair to say that people with low grade MEC on here have had great outcomes from everything I've seen.

    Stay positive, do the right things for your health, trust your doctors and I'm sure you will come through the other side of this stronger.

  • noms
    noms Member Posts: 2 Member
    #15
    https://csn.cancer.org/discussion/comment/1688957#Comment_1688957

    Hi,

    How are you doing today? Also had base of tounge mec, low to intermediate, miner salivary duct. This was six years ago. I have ct chest exams, and still get worried until today.

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #16
    https://csn.cancer.org/discussion/comment/1700086#Comment_1700086

    I too get the chest x-rays yearly, but nothing shows up. My doctor finally told me after 7 years of being cancer free that the odds of reoccurrence after 4 years is almost non-existent. Why he didn't tell me earlier I don't know but now I don't worry about it. Our MEC rarely comes back if its cells were all in the same area. At least that's what I've read. My doc worried mostly about it going to the lungs and it hasn't after 10 years now. You're probably safe too is my guess. Even though he told me that he still wants to see me for a total of 15 years, but I stopped going last year. Maybe I'll go back in a year or two. Just not worried about it.

    Glad to see someone else with MEC is still checking the forum. I try to check in every few months looking for others like me.


    Stay clear! Tom

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #17
    https://csn.cancer.org/discussion/comment/1689953#Comment_1689953

    Hey Leo, very good to hear from you. Thought we had all left the forum. Glad to see we still have a presence here.

  • noms
    noms Member Posts: 2 Member
    #18
    https://csn.cancer.org/discussion/comment/1700160#Comment_1700160


    https://csn.cancer.org/discussion/comment/1700160#Comment_1700160

    Glad to here the time that has past and how calm you are about it today. I am 33 years old and still very nervous about it. mine was in minor salivary duct, base of tongue. T2 (2.5 cm), widely invasive. no lymph nodes involved. margin wasn't clear. so had a second operation and radiation. from some reading I understood some of these features have good prognoses and some less.. I have 2 small lung nodules that haven't changed in 3.5 months after repeat CT scan. so seems that might be OK. cant find much information out there. and don't really know chances of recurrence in my situation. I understood it can happen many years later. thanks for your calming kind words.

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