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melanoma in parotid gland

Forums General Melanoma Community melanoma in parotid gland

  • Post
    Indiana82
    Participant

      Recently diagnosed (January 2015).  Tumor in parotid gland (salivary gland) turned out to be metastatic  melanoma. Had surgery to remove parotid gland (partial) and tumor (with clean margins).  No evidence of primary melanoma found (nothing on skin, eyes, throat, nose).  Clean brain MRI and body PET scans. NED. Going to Mayo next week for another opinion about further surgery and any possible adjuvent treatment.  This past week had a consult with a second ENT surgeon who wanted to remove 15-25 lymph nodes from the neck area near the original surgery site, but decided to wait on this after hearing my original ENT surgeon's thoughts on this.

      Has anyone else had a melanoma in the parotid gland, and if so what has your treatment been?

    Viewing 9 reply threads
    • Replies
        dvd
        Participant

          Mel showed up in my parotid, assumed it was an extension of a mel in situ excised fom my scalp 6 years previously. Jan 2013 I had parotidectomy with excision of 32 lymph nodes in the neck and supraclavicular area, one of which showed malignant cells. The tumor was invasive locally, but the surgeon felt he got it all out (along with muscles, nerves, etc.) and PET/CT showed no other lesions. The tissue was BRAF and C-KIT negative. I had post-op radiation to the neck but local recurrence in the incision line showed up 6 months later and scans also showed aggressive, widespread mets (scalp, jaw, vertebrae, lungs, leg bones & muscle). Jan 2014 I started a clinical trial of ipi plus either nivo or placebo and was NED within 4 months. I had grade 4 side effects in the trial (elevated liver enzymes) so was dropped after 3 months but, almost a year later, I remain NED.

          The parotid gland includes lymphatic tissue, which explains why there can be localized extension from a nearby lesion. Its drainage area include the scalp, face and ear on the same side of the head, so I assume your docs have done a thorough skin exam of these areas.

          dvd
          Participant

            Mel showed up in my parotid, assumed it was an extension of a mel in situ excised fom my scalp 6 years previously. Jan 2013 I had parotidectomy with excision of 32 lymph nodes in the neck and supraclavicular area, one of which showed malignant cells. The tumor was invasive locally, but the surgeon felt he got it all out (along with muscles, nerves, etc.) and PET/CT showed no other lesions. The tissue was BRAF and C-KIT negative. I had post-op radiation to the neck but local recurrence in the incision line showed up 6 months later and scans also showed aggressive, widespread mets (scalp, jaw, vertebrae, lungs, leg bones & muscle). Jan 2014 I started a clinical trial of ipi plus either nivo or placebo and was NED within 4 months. I had grade 4 side effects in the trial (elevated liver enzymes) so was dropped after 3 months but, almost a year later, I remain NED.

            The parotid gland includes lymphatic tissue, which explains why there can be localized extension from a nearby lesion. Its drainage area include the scalp, face and ear on the same side of the head, so I assume your docs have done a thorough skin exam of these areas.

              yazziemac
              Participant

                Hi

                My husband had melanoma in his parotid too, after a primary on his neck.  He had a parotidectomy, radical neck dissection, and 33 rounds of radiation to the area.  About 6 months after radiation ended he was diagnosed with melanoma to brain.  After brain surgery and gamma knife radiation for the brain tumour, he now has multiple tumours in liver, muscle, bone, etc.  He's now on Yervoy, has only had one treatment so far.

                Best,

                Yasmin

                yazziemac
                Participant

                  Hi

                  My husband had melanoma in his parotid too, after a primary on his neck.  He had a parotidectomy, radical neck dissection, and 33 rounds of radiation to the area.  About 6 months after radiation ended he was diagnosed with melanoma to brain.  After brain surgery and gamma knife radiation for the brain tumour, he now has multiple tumours in liver, muscle, bone, etc.  He's now on Yervoy, has only had one treatment so far.

                  Best,

                  Yasmin

                  yazziemac
                  Participant

                    Hi

                    My husband had melanoma in his parotid too, after a primary on his neck.  He had a parotidectomy, radical neck dissection, and 33 rounds of radiation to the area.  About 6 months after radiation ended he was diagnosed with melanoma to brain.  After brain surgery and gamma knife radiation for the brain tumour, he now has multiple tumours in liver, muscle, bone, etc.  He's now on Yervoy, has only had one treatment so far.

                    Best,

                    Yasmin

                  dvd
                  Participant

                    Mel showed up in my parotid, assumed it was an extension of a mel in situ excised fom my scalp 6 years previously. Jan 2013 I had parotidectomy with excision of 32 lymph nodes in the neck and supraclavicular area, one of which showed malignant cells. The tumor was invasive locally, but the surgeon felt he got it all out (along with muscles, nerves, etc.) and PET/CT showed no other lesions. The tissue was BRAF and C-KIT negative. I had post-op radiation to the neck but local recurrence in the incision line showed up 6 months later and scans also showed aggressive, widespread mets (scalp, jaw, vertebrae, lungs, leg bones & muscle). Jan 2014 I started a clinical trial of ipi plus either nivo or placebo and was NED within 4 months. I had grade 4 side effects in the trial (elevated liver enzymes) so was dropped after 3 months but, almost a year later, I remain NED.

                    The parotid gland includes lymphatic tissue, which explains why there can be localized extension from a nearby lesion. Its drainage area include the scalp, face and ear on the same side of the head, so I assume your docs have done a thorough skin exam of these areas.

                    Fen
                    Participant

                      Wow, deja vu.  Almost 10 years ago I had my paratoid removed due to a tumor in the lymph node in the gland. Melanoma with no primary.  Susequent surgery removed about 40 lymph nodes with none showing signs of mel.  I did 6 months of interferon – it was awful – and have been NED since.  Honestly, I'm sure the interferon did nothing but it was the standard of care 10 years ago.

                      It sounds like you have a logical plan to follow and are getting treated at a great place.  

                      Please keep posting.  I'll be interested to see what options you are given.   good luck!

                        jogo
                        Participant

                          Deja vu trios.  May 6, 2013 I felt a "peach pit" in my left parotid.  Dx = metastatic melanoma.  The surgeon ordered a PET scan and sent me to my dermatologist to find the primary.  The PET scan indicated no other mets.  My dermatologist couldn't find anything.  She sent me to a melanoma clinic .I saw three doctors there.  The melanoma specialist dermatologist couldn't find a primary either; an ENT surgeon at the clinic said that he would remove only the [outer] lobe of the parotid that had the tumor [and therefore avoid dissecting around the facial nerve]; the oncologist told me that I was a good candidate for his clinical trial. 

                          I went with the original surgeon. June 6, 2013 I had total [left] parotidectomy and radical dissection of the lymph glands on the left side of my neck.  It was a 7 1/2 hour operation. There was no melanoma found other than the tumor [peach pit].  The rest of the parotid and the lymph glands were clear.  With in seven weeks, I entered clinical trial E 1609 which is examining the use of ipilimumab in the adjuvant setting.  Treatment had to be stopped after only 2 infusions of 3 mg Yervoy[per kilogram body weight] because my immune system attacked my colon.  My immune system's reaction to the Yeroy was extreme. Twenty-six days in the intermediate critical care unit, nine units of blood, two infusions of Remicade, and I went home for a three month recovery period.  Colitis was reversed, any adrenal problems seem to be resolved, and I'm still NED.  I'm still being observed in the trial

                          If you are NED why is the second surgery being suggested?  Is it possible for you to receive adjuvant treatment without the second surgery?  Before I went to the melanoma clinic, I had  met with an oncologist who explained the treatment with interferon.  After I had gone to the melanoma clinic, and before my surgery, he called to tell me that it would be possible for me to participate the clinical trial through him.  I had already decided to go with the oncologist I met at the melanoma clinic since he was at a medical school hospital.

                          I hope the Mayo clinic answers your questions and provides a reasonable plan.   If you are NED and can receive 3 mg Yervoy or other adjuvant treatment, do your homework and find out as much as you can before you start.  I do not regret any decision I made since I felt the peach pit in my cheek. Somewhere more of my adventures are in the MPIP archives.  I wish you the very best.  I'll be thinking of you.  You may not wish to remain anonymous.  There are very knowledgeable, caring, supportive people in this group to whom I will always be grateful.  Good luck.smiley

                          jogo
                          Participant

                            Deja vu trios.  May 6, 2013 I felt a "peach pit" in my left parotid.  Dx = metastatic melanoma.  The surgeon ordered a PET scan and sent me to my dermatologist to find the primary.  The PET scan indicated no other mets.  My dermatologist couldn't find anything.  She sent me to a melanoma clinic .I saw three doctors there.  The melanoma specialist dermatologist couldn't find a primary either; an ENT surgeon at the clinic said that he would remove only the [outer] lobe of the parotid that had the tumor [and therefore avoid dissecting around the facial nerve]; the oncologist told me that I was a good candidate for his clinical trial. 

                            I went with the original surgeon. June 6, 2013 I had total [left] parotidectomy and radical dissection of the lymph glands on the left side of my neck.  It was a 7 1/2 hour operation. There was no melanoma found other than the tumor [peach pit].  The rest of the parotid and the lymph glands were clear.  With in seven weeks, I entered clinical trial E 1609 which is examining the use of ipilimumab in the adjuvant setting.  Treatment had to be stopped after only 2 infusions of 3 mg Yervoy[per kilogram body weight] because my immune system attacked my colon.  My immune system's reaction to the Yeroy was extreme. Twenty-six days in the intermediate critical care unit, nine units of blood, two infusions of Remicade, and I went home for a three month recovery period.  Colitis was reversed, any adrenal problems seem to be resolved, and I'm still NED.  I'm still being observed in the trial

                            If you are NED why is the second surgery being suggested?  Is it possible for you to receive adjuvant treatment without the second surgery?  Before I went to the melanoma clinic, I had  met with an oncologist who explained the treatment with interferon.  After I had gone to the melanoma clinic, and before my surgery, he called to tell me that it would be possible for me to participate the clinical trial through him.  I had already decided to go with the oncologist I met at the melanoma clinic since he was at a medical school hospital.

                            I hope the Mayo clinic answers your questions and provides a reasonable plan.   If you are NED and can receive 3 mg Yervoy or other adjuvant treatment, do your homework and find out as much as you can before you start.  I do not regret any decision I made since I felt the peach pit in my cheek. Somewhere more of my adventures are in the MPIP archives.  I wish you the very best.  I'll be thinking of you.  You may not wish to remain anonymous.  There are very knowledgeable, caring, supportive people in this group to whom I will always be grateful.  Good luck.smiley

                            jogo
                            Participant

                              Deja vu trios.  May 6, 2013 I felt a "peach pit" in my left parotid.  Dx = metastatic melanoma.  The surgeon ordered a PET scan and sent me to my dermatologist to find the primary.  The PET scan indicated no other mets.  My dermatologist couldn't find anything.  She sent me to a melanoma clinic .I saw three doctors there.  The melanoma specialist dermatologist couldn't find a primary either; an ENT surgeon at the clinic said that he would remove only the [outer] lobe of the parotid that had the tumor [and therefore avoid dissecting around the facial nerve]; the oncologist told me that I was a good candidate for his clinical trial. 

                              I went with the original surgeon. June 6, 2013 I had total [left] parotidectomy and radical dissection of the lymph glands on the left side of my neck.  It was a 7 1/2 hour operation. There was no melanoma found other than the tumor [peach pit].  The rest of the parotid and the lymph glands were clear.  With in seven weeks, I entered clinical trial E 1609 which is examining the use of ipilimumab in the adjuvant setting.  Treatment had to be stopped after only 2 infusions of 3 mg Yervoy[per kilogram body weight] because my immune system attacked my colon.  My immune system's reaction to the Yeroy was extreme. Twenty-six days in the intermediate critical care unit, nine units of blood, two infusions of Remicade, and I went home for a three month recovery period.  Colitis was reversed, any adrenal problems seem to be resolved, and I'm still NED.  I'm still being observed in the trial

                              If you are NED why is the second surgery being suggested?  Is it possible for you to receive adjuvant treatment without the second surgery?  Before I went to the melanoma clinic, I had  met with an oncologist who explained the treatment with interferon.  After I had gone to the melanoma clinic, and before my surgery, he called to tell me that it would be possible for me to participate the clinical trial through him.  I had already decided to go with the oncologist I met at the melanoma clinic since he was at a medical school hospital.

                              I hope the Mayo clinic answers your questions and provides a reasonable plan.   If you are NED and can receive 3 mg Yervoy or other adjuvant treatment, do your homework and find out as much as you can before you start.  I do not regret any decision I made since I felt the peach pit in my cheek. Somewhere more of my adventures are in the MPIP archives.  I wish you the very best.  I'll be thinking of you.  You may not wish to remain anonymous.  There are very knowledgeable, caring, supportive people in this group to whom I will always be grateful.  Good luck.smiley

                            Fen
                            Participant

                              Wow, deja vu.  Almost 10 years ago I had my paratoid removed due to a tumor in the lymph node in the gland. Melanoma with no primary.  Susequent surgery removed about 40 lymph nodes with none showing signs of mel.  I did 6 months of interferon – it was awful – and have been NED since.  Honestly, I'm sure the interferon did nothing but it was the standard of care 10 years ago.

                              It sounds like you have a logical plan to follow and are getting treated at a great place.  

                              Please keep posting.  I'll be interested to see what options you are given.   good luck!

                              Fen
                              Participant

                                Wow, deja vu.  Almost 10 years ago I had my paratoid removed due to a tumor in the lymph node in the gland. Melanoma with no primary.  Susequent surgery removed about 40 lymph nodes with none showing signs of mel.  I did 6 months of interferon – it was awful – and have been NED since.  Honestly, I'm sure the interferon did nothing but it was the standard of care 10 years ago.

                                It sounds like you have a logical plan to follow and are getting treated at a great place.  

                                Please keep posting.  I'll be interested to see what options you are given.   good luck!

                                Indiana82
                                Participant

                                  Many thanks for your replies and encouragement.  Really appreciate it.  Will update after our trip to Mayo.

                                    jogo
                                    Participant

                                      How did things go at Mayo?  Hope all went well.smiley

                                      jogo
                                      Participant

                                        How did things go at Mayo?  Hope all went well.smiley

                                        jogo
                                        Participant

                                          How did things go at Mayo?  Hope all went well.smiley

                                          Indiana82
                                          Participant

                                            Decided on no further surgery at this time.  Second PET scan was clean.  Dermatologist found nothing.  Mayo Medical oncologist recommends at the very least PET scans every 3-4 months for 3 years (hopefully our insurance will agree!) and possibly starting Leukine or one of the available clinical trials.  He cites a 50% likely recurrence within 3 years.  Not certain at this point whether to begin Leukine, especially after researching the posts on this site and other data.  Will probably return to Dr. Albertini in Madison as he is much closer and the doc at Mayo recommended him and this option as well.  As we've heard several docs say, this type of medicine is an art and not a science.  It would be a bit more comforting if the opinions we receive would agree on the same treatment plan.  We have even heard differing opinions as to how often PET scans should be done–that too often is too harmful.  

                                             

                                             

                                             

                                            Indiana82
                                            Participant

                                              Decided on no further surgery at this time.  Second PET scan was clean.  Dermatologist found nothing.  Mayo Medical oncologist recommends at the very least PET scans every 3-4 months for 3 years (hopefully our insurance will agree!) and possibly starting Leukine or one of the available clinical trials.  He cites a 50% likely recurrence within 3 years.  Not certain at this point whether to begin Leukine, especially after researching the posts on this site and other data.  Will probably return to Dr. Albertini in Madison as he is much closer and the doc at Mayo recommended him and this option as well.  As we've heard several docs say, this type of medicine is an art and not a science.  It would be a bit more comforting if the opinions we receive would agree on the same treatment plan.  We have even heard differing opinions as to how often PET scans should be done–that too often is too harmful.  

                                               

                                               

                                               

                                              Indiana82
                                              Participant

                                                Decided on no further surgery at this time.  Second PET scan was clean.  Dermatologist found nothing.  Mayo Medical oncologist recommends at the very least PET scans every 3-4 months for 3 years (hopefully our insurance will agree!) and possibly starting Leukine or one of the available clinical trials.  He cites a 50% likely recurrence within 3 years.  Not certain at this point whether to begin Leukine, especially after researching the posts on this site and other data.  Will probably return to Dr. Albertini in Madison as he is much closer and the doc at Mayo recommended him and this option as well.  As we've heard several docs say, this type of medicine is an art and not a science.  It would be a bit more comforting if the opinions we receive would agree on the same treatment plan.  We have even heard differing opinions as to how often PET scans should be done–that too often is too harmful.  

                                                 

                                                 

                                                 

                                              Indiana82
                                              Participant

                                                Many thanks for your replies and encouragement.  Really appreciate it.  Will update after our trip to Mayo.

                                                Indiana82
                                                Participant

                                                  Many thanks for your replies and encouragement.  Really appreciate it.  Will update after our trip to Mayo.

                                                  HHN
                                                  Participant

                                                    After reading all comments, I am curious if all of you who have gone through the treatment would choose to do so again if you were a healthy 79 year old?  I have had resection of my cheek and have a positive sentinel node and now am debating further neck dissection and chemo.  Wondering at my age if all of that is worth it.

                                                      Nashvillian
                                                      Participant

                                                        I am 42 and just went through all this. I am repsonding because these posts are from years ago. I just had my paroid removed and 34 lymph nodes and it was not easy. I am a decenlty in shap guy need to lose 25 libs but strong. You do not have todo chemo now for this. Ask you dr about the immunotherpaies available they are nto as harsh.

                                                         

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