melanoma in parotid gland

This topic has 23 replies, 7 voices, and was last updated 5 years, 12 months ago by Nashvillian.

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- March 16, 2015 at 10:20 pm
- Quote
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?

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Replies

- - March 17, 2015 at 2:29 am
  - Quote
  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.
  - March 17, 2015 at 12:19 pm
    
    Quote
    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
  - March 17, 2015 at 12:19 pm
    
    Quote
    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
  - March 17, 2015 at 12:19 pm
    
    Quote
    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
- - March 17, 2015 at 2:29 am
  - Quote
  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.
- - March 17, 2015 at 2:29 am
  - Quote
  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.
- - March 17, 2015 at 12:20 pm
  - Quote
  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!
  - March 18, 2015 at 4:39 am
    
    Quote
    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.
  - March 18, 2015 at 4:39 am
    
    Quote
    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.
  - March 18, 2015 at 4:39 am
    
    Quote
    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.
- - March 17, 2015 at 12:20 pm
  - Quote
  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!
- - March 17, 2015 at 12:20 pm
  - Quote
  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!
- - March 18, 2015 at 11:17 pm
  - Quote
  Indiana82
  Participant
  Many thanks for your replies and encouragement. Really appreciate it. Will update after our trip to Mayo.
- - March 18, 2015 at 11:17 pm
  - Quote
  Indiana82
  Participant
  Many thanks for your replies and encouragement. Really appreciate it. Will update after our trip to Mayo.
  - April 10, 2015 at 4:09 am
    
    Quote
    jogo
    Participant
    
    How did things go at Mayo? Hope all went well.
  - April 10, 2015 at 4:09 am
    
    Quote
    jogo
    Participant
    
    How did things go at Mayo? Hope all went well.
  - April 10, 2015 at 1:58 pm
    
    Quote
    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.
  - April 10, 2015 at 1:58 pm
    
    Quote
    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.
  - April 10, 2015 at 1:58 pm
    
    Quote
    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.
  - April 10, 2015 at 4:09 am
    
    Quote
    jogo
    Participant
    
    How did things go at Mayo? Hope all went well.
- - March 18, 2015 at 11:17 pm
  - Quote
  Indiana82
  Participant
  Many thanks for your replies and encouragement. Really appreciate it. Will update after our trip to Mayo.
- - July 1, 2017 at 4:32 pm
  - Quote
  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.
  - September 28, 2017 at 9:37 pm
    
    Quote
    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.