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Mucosal melanoma of the cervix

Forums Mucosal Melanoma Community Mucosal melanoma of the cervix

  • Post
    SunnyTheNurse
    Participant

    Hi there, I'd love to hear from anyone else diagnosed with this very rare cancer. 

    I'm 39, live in Australia and have had two large growths removed by way of radical hysterectomy. Furthermore, biopsies from that found cells in my vagina and removed pelvic lymph nodes. I've had radiotherapy and am now about to begin a new immunotherapy treatment. It's uncharted waters in terms of how to beat this. Please share your approach. Erin

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  • Replies
      stars
      Participant

      Erin, I'm so sorry to hear about your situation.  It's one of those really rare forms of melanoma that has – for once – got nothing to do with sun exposure. You've probably read this already – it's the information page on this site:

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466987/

      However, there's so much going on in melanoma treatment that stats etc are almost always out of  date. Which trial are you on? I hope that someone on MRF MPIP can share their approach with you, I just wanted to let you know that you are not alone.

      I'm Australian, in my 40s, and have this year had three superficial spreading melanomas (stage 0, stage 1 and stage 1) removed from my thigh, arm and chest respectively. It's a huge shock getting diagnosed but the important thing is that you are diangosed and in treatment asap.

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      stars
      Participant

      Erin, I'm so sorry to hear about your situation.  It's one of those really rare forms of melanoma that has – for once – got nothing to do with sun exposure. You've probably read this already – it's the information page on this site:

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466987/

      However, there's so much going on in melanoma treatment that stats etc are almost always out of  date. Which trial are you on? I hope that someone on MRF MPIP can share their approach with you, I just wanted to let you know that you are not alone.

      I'm Australian, in my 40s, and have this year had three superficial spreading melanomas (stage 0, stage 1 and stage 1) removed from my thigh, arm and chest respectively. It's a huge shock getting diagnosed but the important thing is that you are diangosed and in treatment asap.

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      stars
      Participant

      Erin, I'm so sorry to hear about your situation.  It's one of those really rare forms of melanoma that has – for once – got nothing to do with sun exposure. You've probably read this already – it's the information page on this site:

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466987/

      However, there's so much going on in melanoma treatment that stats etc are almost always out of  date. Which trial are you on? I hope that someone on MRF MPIP can share their approach with you, I just wanted to let you know that you are not alone.

      I'm Australian, in my 40s, and have this year had three superficial spreading melanomas (stage 0, stage 1 and stage 1) removed from my thigh, arm and chest respectively. It's a huge shock getting diagnosed but the important thing is that you are diangosed and in treatment asap.

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      CHD
      Participant

      Hi Sunny,

      As you said, not a lot is known about mucosal melanoma or how best to treat it, our numbers are so small.  There are, as a result, not too many of us on any given melanoma forum and it can be hard to find anyone with similar experience.  I have been dealing with vulvar mucosal melanoma since 2013.  There is another poster here with vulvar melanoma, who I believe was stage III at diagnosis and continues to be.  Mine was stage I when it was caught and so far surgery has been my only treatment, three surgeries total, the last to try to eradicate melanoma in situ in the same area.  I can only recommend that you make sure you are being treated by an actual melanoma specialist.  You will want the benefit of that level of expertise.  I agree with Stars when she says treat aggressively.  It is what I will do should I advance to stage IV.  Good luck to you!

      Cheri

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      CHD
      Participant

      Hi Sunny,

      As you said, not a lot is known about mucosal melanoma or how best to treat it, our numbers are so small.  There are, as a result, not too many of us on any given melanoma forum and it can be hard to find anyone with similar experience.  I have been dealing with vulvar mucosal melanoma since 2013.  There is another poster here with vulvar melanoma, who I believe was stage III at diagnosis and continues to be.  Mine was stage I when it was caught and so far surgery has been my only treatment, three surgeries total, the last to try to eradicate melanoma in situ in the same area.  I can only recommend that you make sure you are being treated by an actual melanoma specialist.  You will want the benefit of that level of expertise.  I agree with Stars when she says treat aggressively.  It is what I will do should I advance to stage IV.  Good luck to you!

      Cheri

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      CHD
      Participant

      Hi Sunny,

      As you said, not a lot is known about mucosal melanoma or how best to treat it, our numbers are so small.  There are, as a result, not too many of us on any given melanoma forum and it can be hard to find anyone with similar experience.  I have been dealing with vulvar mucosal melanoma since 2013.  There is another poster here with vulvar melanoma, who I believe was stage III at diagnosis and continues to be.  Mine was stage I when it was caught and so far surgery has been my only treatment, three surgeries total, the last to try to eradicate melanoma in situ in the same area.  I can only recommend that you make sure you are being treated by an actual melanoma specialist.  You will want the benefit of that level of expertise.  I agree with Stars when she says treat aggressively.  It is what I will do should I advance to stage IV.  Good luck to you!

      Cheri

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      Jubes
      Participant

      Hi Erin 

      so sorry you are fighting this. I am in Sydney out with the west mead team but My melanoma is stage 4 lungs. I can only say that my team of doctors are amazing and my immunotherapy has worked miraculously. Where are you in Australia? I can only recommend Westmead cancer clinic if you are looking for specialists. My doctors are dr Rick Kefford and dr Matt Carlino. Dr Georgina long has a great reputation and is trialling some amazing new therapies. 

      Best wishes

      anne-Louise 

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      Jubes
      Participant

      Hi Erin 

      so sorry you are fighting this. I am in Sydney out with the west mead team but My melanoma is stage 4 lungs. I can only say that my team of doctors are amazing and my immunotherapy has worked miraculously. Where are you in Australia? I can only recommend Westmead cancer clinic if you are looking for specialists. My doctors are dr Rick Kefford and dr Matt Carlino. Dr Georgina long has a great reputation and is trialling some amazing new therapies. 

      Best wishes

      anne-Louise 

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        SunnyTheNurse
        Participant

        Hi there, I'm in Sydney and going through the POW clinic in Randwick. I've heard great things about your two doctors. So far I've had two opposing opinions re starting pembrolizumab now so I'm going to a third at Chris OBrien this Friday. Was this the drug you used or one of the earlier incarnations? I know everyone reacts differently, but did you personally struggle with side effects?

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        SunnyTheNurse
        Participant

        Hi there, I'm in Sydney and going through the POW clinic in Randwick. I've heard great things about your two doctors. So far I've had two opposing opinions re starting pembrolizumab now so I'm going to a third at Chris OBrien this Friday. Was this the drug you used or one of the earlier incarnations? I know everyone reacts differently, but did you personally struggle with side effects?

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        SunnyTheNurse
        Participant

        Hi there, I'm in Sydney and going through the POW clinic in Randwick. I've heard great things about your two doctors. So far I've had two opposing opinions re starting pembrolizumab now so I'm going to a third at Chris OBrien this Friday. Was this the drug you used or one of the earlier incarnations? I know everyone reacts differently, but did you personally struggle with side effects?

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      Jubes
      Participant

      Hi Erin 

      so sorry you are fighting this. I am in Sydney out with the west mead team but My melanoma is stage 4 lungs. I can only say that my team of doctors are amazing and my immunotherapy has worked miraculously. Where are you in Australia? I can only recommend Westmead cancer clinic if you are looking for specialists. My doctors are dr Rick Kefford and dr Matt Carlino. Dr Georgina long has a great reputation and is trialling some amazing new therapies. 

      Best wishes

      anne-Louise 

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      SunnyTheNurse
      Participant

      Thankyou so much for your replies, I really didn't expect to hear from anyone. All the best to each of you, each facing your own difficulties. I'm going for a glass of wine later and I will be cheers-ing to you folks.

      Has anyone tried Pembrolizumab (aka Keytruda)? Very new and we are fortunate in Australia that it's now on the PBS. Nasty side effects though, but that's the risk we take I guess. 

      Best wishes,

      Erin

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        Bridget Chicago
        Participant

        Hi Erin, hope you are doing well! My mom has vulvar melanoma and began keytruda in late October with second dose in November. She has an autoimmune disease and COPD which may have contributed to her pneumonia in December. She is still in the hospital trying to gain strength to keep fighting. Keytruda may have been hard for her to manage but sounds like many others are having some success with it. And I hope you find great results! Know there are others fighting a similar form of this mean melanoma and we are all cheering you on!!!!!

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        Bridget Chicago
        Participant

        Hi Erin, hope you are doing well! My mom has vulvar melanoma and began keytruda in late October with second dose in November. She has an autoimmune disease and COPD which may have contributed to her pneumonia in December. She is still in the hospital trying to gain strength to keep fighting. Keytruda may have been hard for her to manage but sounds like many others are having some success with it. And I hope you find great results! Know there are others fighting a similar form of this mean melanoma and we are all cheering you on!!!!!

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        Bridget Chicago
        Participant

        Hi Erin, hope you are doing well! My mom has vulvar melanoma and began keytruda in late October with second dose in November. She has an autoimmune disease and COPD which may have contributed to her pneumonia in December. She is still in the hospital trying to gain strength to keep fighting. Keytruda may have been hard for her to manage but sounds like many others are having some success with it. And I hope you find great results! Know there are others fighting a similar form of this mean melanoma and we are all cheering you on!!!!!

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        Sallysuperstar
        Participant
        Recently diagnosed with cervical melanoma. Any info would be appreciated

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      SunnyTheNurse
      Participant

      Thankyou so much for your replies, I really didn't expect to hear from anyone. All the best to each of you, each facing your own difficulties. I'm going for a glass of wine later and I will be cheers-ing to you folks.

      Has anyone tried Pembrolizumab (aka Keytruda)? Very new and we are fortunate in Australia that it's now on the PBS. Nasty side effects though, but that's the risk we take I guess. 

      Best wishes,

      Erin

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      SunnyTheNurse
      Participant

      Thankyou so much for your replies, I really didn't expect to hear from anyone. All the best to each of you, each facing your own difficulties. I'm going for a glass of wine later and I will be cheers-ing to you folks.

      Has anyone tried Pembrolizumab (aka Keytruda)? Very new and we are fortunate in Australia that it's now on the PBS. Nasty side effects though, but that's the risk we take I guess. 

      Best wishes,

      Erin

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