looking for survivors of parotid cancer (mucoepidermal carcinoma)

sgendrolini
sgendrolini Member Posts: 11
edited March 2014 in Head and Neck Cancer #1
hello,
my husband who is 43 was diagnosed 4 months ago with a high grade parotid cancer. He was told that the only effective treatment was surgery (with removal of ear, facial nerve and jaw). At this point he was told that chemotherapy would be ineffective for this type of cancer and that radiotherapy wasn't possible in view of the extent and volume of the tumour. After the biopsy everything got worse: sentsation of electric shocks in his face, deafness, pain in ear. He was told that on reflection the tumour was inoperaple as it had infiltrated tissues as far as the carotid artery. Therefore there couldn't be a "margin". Instead they suggested that he followed a 6 week course of chemotherapy (F5U + folinic acid) - 24h a day, 1 day a week for 6 weeks. He supported the treatment very well at first but got very nauseous towards the end. He has just finished his 6 weeks. He now has nose bleeds, sore gums, stomach pains... But we are hopefull that these symptoms will soon go away. Something strange though... the ends of his fingers have blackened. Has anyone experienced this after chemo?
I have to say that we are very hopeful and optimistic that the chemo has helped because even I can see that the lump in front of his ear has decreased significantly in size. He will have an MRI scan in a week's time and we will know then if he can now be operated on or at least have radiotherapy treatment.
It is a very scary. We would love to hear from other people who have undergone these treatments for parotid cancer to help us to understand what we can expect. Please share your experiences with us...

Comments

  • zimbo
    zimbo Member Posts: 11
    #2
    Hello Sara:

    I hope that by now your husband is doing well. 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.
    I hope that your husband is doing as well. My best to you and your husband. Larry
  • sajjad
    sajjad Member Posts: 8
    #3
    I am sure your husband is recovering. We will pray for him. About blackening of fingers, don't worry this will go away. It is a common effect of chemo for some people, at least I suffered from this but now it has gone away.
  • sgendrolini
    sgendrolini Member Posts: 11
    #4
    zimbo said:

    Hello Sara:

    I hope that by now your husband is doing well. 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.
    I hope that your husband is doing as well. My best to you and your husband. Larry

    Hi Larry, sorry it has taken me so long to reply to your message - I haven't been back to the site for a long time. my husband has been undergoing radiotherapy and chemo so it has been pretty tough. But the results are very positive, the tumour continues to shrink visibly and dramatically. He will have an MRI scan in December. As for your partner, they told us that chemo does not work well on this type of cancer, but at least for Serge it was extremely effective; I am so glad to hear that your partner's cat and pet scans were cancer free and by now he must have had his reconstructive surgery. It must be very hard.
    Hope he is now feeling much better and that the surgery helped, and that he is still cancer free. We are starting to wonder now if my husband is actually cured, but the next few years are going to be scary, waiting to see if the cancer returns or not.

    Warm wishes to you both - and keep us posted from time to time on how you are doing!
    Sara and Serge
  • zimbo
    zimbo Member Posts: 11
    #5
    sgendrolini said:

    Hi Larry, sorry it has taken me so long to reply to your message - I haven't been back to the site for a long time. my husband has been undergoing radiotherapy and chemo so it has been pretty tough. But the results are very positive, the tumour continues to shrink visibly and dramatically. He will have an MRI scan in December. As for your partner, they told us that chemo does not work well on this type of cancer, but at least for Serge it was extremely effective; I am so glad to hear that your partner's cat and pet scans were cancer free and by now he must have had his reconstructive surgery. It must be very hard.
    Hope he is now feeling much better and that the surgery helped, and that he is still cancer free. We are starting to wonder now if my husband is actually cured, but the next few years are going to be scary, waiting to see if the cancer returns or not.

    Warm wishes to you both - and keep us posted from time to time on how you are doing!
    Sara and Serge

    Sara and Serge-
    I'm also sorry for the long response time. My partner had reconstructive surgery last July and went back to work full time (college professor) last fall and was doing well until November when his oncologist found a small mass in the upper lobe of his right lung, rather than wait for a biopsy, he was immediately scheduled for thoracic surgery, the mass was removed and it was benign. Unfortunately, the recovery from the lung surgery was long and he's just back to work again in March. We're always wondering if he is actually cured too, and can only hope and pray for the best. I'm glad that he has a very aggressive oncologist who is always willing to try. His quote is "I'd much rather do it and say we tried than not did it and say we should have tried
  • PeteRillen
    PeteRillen Member Posts: 2
    #6
    Hello, I was recently diagnose with parotid cancer. Hope your husband is doing very well. I just got out of the hospital 2 weeks ago and I will start chemo and radiation here in a couple weeks. I was told that I will have tube placed in my stomache as the radiation treatment will cause my throat to be very sore. Hope you dont mind me asking, how did your husband respond to radiation if he was treated?
  • SueBIE2
    SueBIE2 Member Posts: 7
    #7
    Hello,
    I am a 35 YEAR survivor of parotid cancer - originally diagnosed in 1969. The only treatment option was surgery, no radiation or chemo. I was 8 at the time.
    The first doc told my mother to take me home to die after the results of the needle biopsy, the second severed my 7th nerve (facial) during surgery. The next surgeon removed the parotid and the mastoid bone, as well as most lymph nodes in the neck on that side. I told him he should have signed his name in my neck! He did a magnificent job with the reconstruction of my right ear and the repair of the severed nerve. I have no doubt that without his persistance and optimism that I would not be alive today.
    He also wrote up my prognosis for the Air Force so that I was able to enlist when I was 21. I have lived all over the world, pursued my dreams, and ended up in Oklahoma married to a wonderful man.
    I continue to celebrate my blessings and have remained cancer free. This week celebrates 35 years since my original diagnoses.

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