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Thread: Does anyone have mucosal melanoma? Eye, tongue, vulvar, vaginal?

  1. #21
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    I saw a melanoma specialist finally this week, for the first time. Here is some of what he told me about mucosal melanoma in general, and vulvar in particular. Apologies as I don't know how much of this is specific to vulvar melanoma:

    - Much less is known about mucosal and there just isn't a lot of data available for them to be able to devise treatment plans specifically for the mucosal type, therefore much of it is still based on what is done for cutaneous.
    - Lymph node positivity or negativity and the thickness of the lesion are two of the more important prognostic criteria. There is not enough data available on this rare disease to provide reliable prognostic data beyond that. In other words, he did not feel he could give me any number at all at 5 years, other than to tell me what specific things about my own case are encouraging, etc. I guess this means anyone reading this could just as well toss out all the numbers I mentioned above, based on what this particular specialist said. Which is not necessarily a bad thing, considering the numbers. It is a little confusing, though.
    - He does not believe mucosal melanoma is more aggressive, only that it tends to be in places where it is hidden and usually not discovered until it is quite advanced, thus the reason it can be associated with a poorer prognosis.
    - Vulvar/vaginal melanoma is known to have an unusually high local recurrence rate, more so than most, and that area in particular needs to be watched very closely, especially in the first 2 years. This is in addition to the regular 6-month whole body skin checks. Vulvar skin checks should take place every 3 months at a minimum (this is the first I have heard of this and have not been doing this, so this was news to me). Research is being done right now to try to figure out why vulvar melanoma so often recurs locally the way it does.
    - After 2 years, the odds of having local recurrence or spread decrease with every year that goes by.
    - It is not the primary melanoma anyone is worried about, it's the potential for invasion. On reflection this seems obvious, but I hadn't thought of it that way. The primary is removed surgically with a wide local excision. Another challenging part of mucosal melanoma is that, unlike most other parts of the body where cutaneous melanoma occurs, it is often very hard to excise all of the primary in a wide local excision just because the location makes it impossible or difficult. This is also true of vulvar melanoma.
    - Interferon is not widely recommended anymore (news to me, too, since one of my doctors is a huge fan of interferon).
    - He personally likes to have PET CT done every 6 months for the first 2 years when risk of recurrence is highest, then after that PET CT is optional. He said he does not think a whole year between PET CTs is ideal since a lot can change in a year. This was news to me and apparently news to my insurance company, who won't even pay for a second PET CT after a year. In the US anyway, these are very expensive scans.

    My husband found the visit very positive and encouraging, and I did find it helpful and informative, though I am still feeling a little uncertain. I suppose it is the nature of dealing with any kind of melanoma diagnosis to feel uncertain! Maybe more so with mucosal, I don't know. Even all the slides the specialist used to discuss melanoma with me were geared toward cutaneous melanoma, which DOES have clearcut prognosis statistics and stages.

    Anyway, my main concern is not a number at 5 or 10 years, it's that I feel confident that I am doing everything I can do to still be here for my kids (many more than that would be just fine, but at least 10, that's what I need). And to that end, I did learn a lot at this visit. Not that my insurance is likely to pay for every 6-month PET CTs. Well, maybe they will; I will talk to my oncologist about what the specialist said.

    It sounds like a lot of advances are being made in the treatment of melanoma, mostly at the major cancer centers where the clinical trials are being carried out. For someone with more advanced stage melanoma, that does seem absolutely to be the place to be. As Mary said above, there does seem to be a lot of communication among these centers, and for anyone with mucosal melanoma, I think there is a lot to be said for making sure we are seen by someone who is on the cutting edge of the latest research and part of that communication loop.

    I need to learn to live in the present and NOT worry about the future, as long as I feel confident I am doing everything in my power to deal with this. It is exciting to know how much research is being done on melanoma and the progress being made.

    Hugs to anyone dealing with this disease, at any stage, and to Mary, Kimberly and Theofesta, thanks so much for all your input too, and hugs.

    If I learn more, I will update again.

    Cheri
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  2. #22
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    You are certainly an amazing person, Cheri. Positive thinking is an amazing medicine....as well as having the kids as a lifeline .

  3. #23
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    I do try to be positive though I don't always succeed. I do have so much more energy to face what needs to be faced when I'm positive. Thanks very much for the kind words, Boatlady.
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  4. #24
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    May 2014
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    Hi ladies, I was reading your thread even though I have a different cancer. I am doing chemo for my lymphoma. I read a lot about cancers and from what I read the best place to irradicate it is at NCI. There is Steve Rosenberg there who develops a new method for melanomas. It involves T cells , the method is called transfer of infiltrating lymphocytes (TIL). I hope that this method will pick up in the future when you will need it. I actually have his presentation webcast. I will see if I can find it.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  5. #25
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    Fighterm, thanks so much for the information on TIL. I wasn't able to get the link (on the other thread) to work but I did find one by Dr. Patrick Hwu with MD Anderson. He sounds very excited about this TIL and the direction things are going. A lot is happening there! That is so nice to hear!
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  6. #26
    Senior User
    Join Date
    May 2014
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    448
    Hi CheriD, the link works, I just checked it out again. You just have to wait a bit until it loads all parts of the presentation. Or may be your computer is too old, I don't know the reason it did not work for you. But the slides in this presentation are so impressive, I wish you all find time to listen to it. It gives so much hope to all cancer patients.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  7. #27
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    Jan 2014
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    326
    Thanks Fighterm, will try again.
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  8. #28
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    Jan 2014
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    Also, speaking of videos, while I was on You Tube yesterday I came across a few very helpful videos about melanoma in general, including two by Dr. Tony Talebi interviewing Dr. Jeff Weber, director of the melanoma program at Moffitt Cancer Center in Tampa, several of Dr. Patrick Hwu with MD Anderson, and one on mucosal melanoma by Dr. Richard Carvajal of Memorial Sloak Kettering. Dr. Carvajal's is particularly interesting since it discusses treatment specifically for mucosal type melanoma. Dr. Weber's covered a lot of very basic, helpful information, everything from what is melanoma, to how certain treatments work, when they're indicated, what the side effects can be (Yervoy, interferon, etc), to how the different stages are treated.
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  9. #29
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    Jan 2014
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    326
    June 2015 and it has been a little over 2 years since my original diagnosis and still no evidence of disease, which has given me cause to celebrate. I am now waiting on the results of my most recent PET-CT scan tomorrow. Fingers crossed it is still clear! I have had some pelvic pain for awhile now and something showed up on my abdominal CT 6 weeks ago that my oncologist thought warranted a closer look. Waiting on these results is always so nerve-wracking.

    I have been doing a lot of research into the latest treatments for melanoma and it is truly amazing the strides being made in the treatment of more advanced stage melanoma just since 2013! We now have, in addition to Yervoy (ipi), the PD-1 drugs, combinations of these with or without radiation treatment, and more, with genetic/immune status testing becoming more advanced as they identify more mutations that help guide treatment, including not just BRAF and KIT, KIT being the one more typically found in mucosal melanomas, but quite a few others. In fact, they are now testing the melanoma found in positive lymph nodes for mutations, which seems to be yet another new way they are finding to optimize treatment. If you are looking for more information on these treatments, there are quite a few videos on You Tube, as well as articles, etc., including quite a lot from the recent ASCO 2015 conference in Chicago, describing some of the advances being made. It really gives me a great deal of hope.

    I continue to be resistant to statistics and have focused more on coming to terms with the unknown, which I think is an issue for many of us with a cancer diagnosis. To that end, I continue to take this one day at a time, to try to live fully, use sun protection, watch my skin carefully, follow up with the doctors and specialists. To live and love and enjoy my kids. I am trying not to put my life too much on hold, to let melanoma steal my peace. Ok, not counting times when I am waiting on scan results! But for the most part I am doing okay. At any rate, it is just very encouraging to me that if the melanoma returns, I will have more options than were available when I started.

    ETA: Scan all clear, still no evidence of disease!! : )
    Last edited by CheriD; 06-27-2015 at 03:12 PM.
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  10. #30
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    I finally located a copy of my report from the melanoma specialist I saw last August.

    I said I would update when I had more information. It does turn out there is one thing I need to correct. I said he told me mucosal vulvovaginal melanoma was not necessarily more aggressive, just usually found at more advanced stages. I do remember him discussing the tendency to find it at more advanced stages. What it says in the report, though, is this: "It is my opinion that given the rarity of this tumor, the literature is not clear on the natural history of this disease. We certainly know that this can be a very aggressive tumor and patients are at risk of developing systemic metastases from vulvar melanoma."

    He then goes on to say that the good news was that my depth of invasion was relatively thin, around 1 mm, and my lymph nodes were negative for regional metastasis.

    The report then says: "The utility of scans can be controversial but it certainly is not unreasonable to proceed with regular surveillance imaging given the unknown natural history of this disease. I also stressed to her that there is a significant risk of local recurrence. It is unclear exactly why vulvovaginal melanomas tend to recur, and I think it is conceivable it has to do with the anatomy and the close approximation of the various mucosal surfaces. It is well documented that there tends to be a field effect of this tumor, and multiple local recurrences are often a problem. For this reason, I stressed to her that it is very important for her to regular GYN examinations, and any suspicious lesions should be biopsied."

    As always, I share this because there is so little information on this type of melanoma. Keeping in mind of course that this is related to my situation and I don't know how much is specific to me, and the opinion of one melanoma specialist, of course.

    I just learned from my local oncologist that the pelvic/hip pain I have been having is most likely a referred pain from the right groin lymph node biopsy site. It has been problematic off and on since my first surgery. Oddly it went away after a few months but then came back last fall and just kept getting worse. The main concern has been that it was melanoma. With this last PET/CT returning clear, I was told that it is not uncommon to have referred pain like this. There is not much to do about it except just treat it symptomatically and hope it disappears one of these days. Not ideal but at least it's not metastasis. For that I am grateful!!

    Cheri
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

 

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