Mucosal-Type Melanoma

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7/21/2014 7:04am
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Replies: 15

This is my first post here and it is amazing and so supportive to read and hear others experiences and know that I really am not alone in this battle that I am facing.

I was diagnosed with vulvar melanoma almost 3 years ago had extensive surgical excision with "clean margins and negative lymph nodes". This past May I developed a fever that lingered for 10 days and after finally seeing my MD a work-up ensued that revealed Metastatic lesions in my liver and lungs. I will begin Yervoy treatments in 3 days. My tumor cells are "wild-type" not BRAF so my understanding is that the Meds to treat the BRAF type are not in the treatment plan at this time.

Wondering if there is anyone else out there being treated for the Mucosal type metastaic Melanoma and how it is going. Also wondering if others have been allowed by their oncologists to try adjunt therapies- specifically I'd like to try Essiac Tea. Will discuss with my oncologist this week.

My prayers go out to all of you. Thank you for your stories of HOPE.

Theresa

Becky - (7/21/2014 - 10:12am)

Hi Theresa

Was your original tumor tested for the C-Kit gene mutaion? That is more common in mucosal melanoma and there has been success with certain meds for that (our resident expert Jerry may chime in on this)

Other than that, from what I have heard, once there are mets beyond the original site, mucosal melanoma is treated like any other cutaneous melanoma that has metastized. There are quite a few people who post to this board with various experiences with mucosal melanoma (my son had oral melanoma) so you may want to search the boards. (I know there is a way to search and I see it at the top of the screen, I have never used it though)

 

Best wishes to you

Becky

theresar - (7/21/2014 - 11:09am)

So happy to hear from you Becky. I am still awaiting the final report on the C-Kit mutation for me knowing that this may offer other therapies if the Vernoy is not effective.

Of course my oncologist responded re. the Essiac Tea that they really discourage any other herbal/ non-traditional therapies while undergoing FDA approved  therapies. This was the answer that I expected and I am disappointed but always HOPEFULL.

Hoping to hear from Jerry.

Theresa

mary1233 - (7/21/2014 - 1:51pm)

Hello Theresa - I was diagnosed almost two years ago with mucosal melanoma in the vagina, with a wild type mutation. At the time of diagnosis, it had alreadyspread to the local lymphnodes. I do not know if a wild type mutation means C-Kit negative also or not. I wish someone could tell me.

 

I hope you are at a major cancer center. I was referred to Sloan because the oncologist that gave me the diagnosis said he had only seen this twice in his career and that I needed to be at a major cancer center to be able to get immunotherapy treatments.Even with that referral, I was so frightened that I could not function and was convinced that I only had a few months to live.

I feel so much better now because I have worked hard to get as much information on my specific disease as I can and it is not easy, as I am sure you know. Not only is your melanoma mucosal, but it is the wild type - a rare cancer with a rare mutation. This is what I have learned:

1. The Patterson Institute in the UK did a complete genomic study of mucosal melanoma. Before, oncologists knew that it was different from cutaneous melanoma, but now they know what it is genetically, as opposed to what it is not.

2. Clinical trials are starting to address the melanoma wild types, which means that if you enroll in one you could get access to immunotherapy treatments that are not widely available - this is why you need to be at a major cancer center.

3. The Phase III trial of Nivolumab (a PD-1 drug) was halted unexpectedly about three weeks ago because the results they were seeing were so good that the researchers gave the patients on the non-Nivolumab arm the opportunity to get on the drug. What I did not know until the post trial press coverage was that wild type melanoma patients in this trial "were required to be randomized". This means that they were looking at the response of the wild type melanoma patients in particular, and it was these patients that did so well on this therapy that they told the other wild types to get on the Nivolumab. BMS has announced that they will be going after FDA approval in the third quarter of 2014, in other words Now. This is another reason to be at a major cancer center.

If you are interested in learning more, you can find ASCO talks by melanoma oncologists on youtube of all places and often on the websites of the cancer centers.

I wish you all the best. Your fear and panic are understandable, but I hope you can get to a place where you can feel hopeful. I do, but it took a lot of work.

Mary

PS A little over a year ago the oncologist I was seeing suggested ipilimumab might be a treatment option. A week later, this same oncologist came out with an announcement that the trials of ipilimumab showed a very low response rate among mucosal melanoma patients. I called him up, absolutely devistated, and he told me that something new in the research is coming out every month. It is so true, they are building on what they learned last month and hopefully you will be the beneficiary.

 

 

 

 

 

theresar - (7/21/2014 - 4:51pm)

Thank you Mary for this very valuable information. I am being treated at a major Comprehensive Cancer center and do feel that I can address possibilities of other treatment courses with my oncologist. I did get my cKIT report back and  I do not have that mutation.

I will be doing further homework surrounding the information you have shared with me prior to my appointment this week.

You are 2 years out from your surgery...Did you recieve immunotherapy? If so what were they using then.

Theresa

mary1233 - (7/22/2014 - 9:17am)

Theresa - I received adjuvant chemotherapy of temodar and cisplatin. I don't know (and my oncologist does not know) if it worked or if the cancer just has not returned after the surgery.

There is a really inspring address by Jed Wolchok through Science Magazine about the state of melanoma and immunotherapy. If I were technical enough I would give you the link. It can be viewed through the Sloan website.

Mary

Teochasse - (7/21/2014 - 1:50pm)

Hi Theresa,

I was  diagnosed with cervical mucosal melanoma in July 2010 after profuse vaginal bleeding and lyfesaving hysterectomy.I subsequently underwent radical pelvic lymphadenectomy to remove the pelvic  basin lymph nodes and discharged with no further treatment.Local recurrence in May 2011 on the left upper vaginal wall that was surgically excised and treated with radiation-both extrenal beam radiation and internal radiation/brachy therapy/.I am BRAF,Nras,C-kit Negative.I have refused  immunotherapies at the time.Currently NED  for 4 years and on protocol of 2 PET scans per year.Mucosal melanoma is very hard to near impossible  to treat once it spreads,but the researchers  have come up with  advanced new treatments lately so that might not be the case anymore.

Best wishes to you,

Teodora Chasse

theresar - (7/21/2014 - 4:54pm)

Teodora  -Thank you for sharing your story. Love reading 4 years out and NED!! Bless you!

Theresa

Phil S - (7/21/2014 - 6:17pm)

Just FYI, Wild Type is not an unusual mutation, it simply is the "normal" mutation that is found in nature.  So, if you are not BRAF or CKit mutations you are considered Wild type unless or until they come up with another test to determine more mutations.  My husband, has been battling mucosal (anal) melanoma for 4 1/2 years now, and is considered wild type, since he tests negative on all known mutation tests for melanoma.  Further, I have not read that mucosal melanoma responds less effectively to immuno therapies.  In fact, I have read that it can and does respond very similarly to treatment, as does cutaneous melanoma.  So the good and the bad, is just like with cutaneous melanoma, sometimes a treatment will work, sometimes it will not.  My husband, Phil is Stage 4 who had lung, stomach, and brain tumors, yet had a very good response to TIL, and hasn't needed any treatment in over two years.  You just never know, have mutiple plans lined up, fighting melanoma is a tricky business!  But, my husband is doing fine right now, living life totally normal and ready for battle if and when needed again!  All the best, keep getting educated, and keep up the fight!  Valerie (Phil's wife)

CHD - (7/21/2014 - 6:57pm)

Hi Theresar,

I also had vulvar melanoma and have had extensive surgeries, including an initial right-sided vulvectomy and SLNBs with clear lymph nodes. 

My husband asked me to ask you whether you've been having yearly PET CT scans.  Your vulvar melanoma sounds like it must have staged similarly to mine (with clear nodes), and our insurance declines to cover yearly PET CTs after the first one, even for mucosal melanoma patients, if you are at an early stage, and my husband is just very frustrated with this.

Have you been at a major cancer center right from the start and could I ask what kind of follow-up plan have they had you on?

I agree that being at a major cancer center must be crucial at a more advanced stage, not only for the possibility of treatment trials, but also, as she said, to be at the forefront of new information, which does seem to be changing rapidly. 

Good luck!

Cheri

 

theresar - (7/23/2014 - 7:16am)

Cheri- Our stories sound too familiar though I pray that you do not follow the same progression as me.I have been followed at a major cancer center all along with a Specific Melanoma Program. Perhaps I had been a bit naive surrounding this whole diagnosis over the past 3 years and of course in hindsite wish I had done a bit more research at that time. I will have to go back to my record to share with you  my exact staging at that time though it was far along because obviously in that "area" I could not even see or know that it was there! With "neg  margins and negative nodes" I thought I was ok.I did not have an initial CT screening at the time of diagnosis. PET/CT scans were never part of or offered as part of my follow-up screening. I was seen by either my dermatologist or my GYN/ONC surgeon every 3 months for visual/physical exams. So when I had unexplained lingering fever-I thought it was some virus-I was thrown off gaurd to discover that my melanoma had returned.

My sister recomended that perhaps you try to petition your insurance company to see if they would cover  periodic scans or talk with your physician to see if there are any screening studies/research out there that you could be a part of.

Blessings on you as you continue on this journey.

Theresa

 

CHD - (7/23/2014 - 6:58pm)

I know what you mean, I could not see mine either and for all I know it could have been there for years.  By the time I finally discovered it, it was 2 x 3 inches.  It had signs of regression and the staging was a little uncertain, though my nodes were clear.  My oncologist has said she strongly believes that anyone with mucosal melanoma should have a PET CT scan every year, but it is still somewhat of a rare cancer and the insurance companies don't yet agree.  My husband feels that we may have to consider paying for them out of pocket, just for peace of mind if nothing else.  They have offered this to us at a discounted price, but even so, still very pricey.  It really is hard to know what to do.  It is so nice to have a forum community like this where we can discuss it all and help each other make the hard decisions and to advocate for ourselves when we need to!

Blessings to you too!

Cheri

JerryfromFauq - (7/22/2014 - 12:14am)

    Here is a question & response that I asked about mutation testing and WILD TYPE genes  and Dr Keith Flahety's response.................................................. ,

I am trying to figure out where on the MIF to post some general questions that relates to genetics genomics, nomenclature. etc. :? :? :?  One question there has been debate about is how the Term "Wild Type Gene" is used. By definition it seems this is the most common form of gene and is considered "unmutated" as far as being cancerous after being tested. I have seen the term such as BRAF and c-kit negative used to mean "unmutated". From my reading it appears that neither is quite accurate without a further qualifyier. Do any of the tests actually show nonmutated" or do they just test for specific mutations and say negative for those and then say "WT"? How do the cases of oncoprotein over expressiom and ------mutation Negative fit in? IS this because a known carcinogenic mutation wasn't found, vice saying that there is no mutations in the genes?

Re: Mutation Testing Question

Postby Keith Flaherty » 26 Aug 2013 12:37
Regarding the question about mutation testing for the mutated oncogenes that we now consider to be the critical ones for which therapies are either validated or in clinical trials, I would put it this way:

Certain melanoma oncogenes, such as BRAF and NRAS, are analyzed using tests that are specifically designed to detect the most common mutations that can occur in those genes that result in a constantly active form of the resulting molecule. These tests come out as either positive or negative. Positive means that the specific mutation being probed was found, negative means that it was not. The gene most certainly exists in its wild type (nonmutated) form in those cases that are reported as negative. CKIT and, on occasion, BRAF and NRAS can be analyzed by "sequencing" in which case the result will not be positive or negative, but rather indicate whether the elements of the gene being sequenced are mutated or nonmutated and, if mutated, where those mutations are found. This is especially important in the case of CKIT since we know that there are several different mutations that can affect the gene and activate the resulting molecule. ...........................................

I'm me, not a statistic. Praying to not be one for years yet.

JerryfromFauq - (7/22/2014 - 12:31am)

Here is an article that is about 2 years old on mucosal mel.

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

I'm me, not a statistic. Praying to not be one for years yet.

Anonymous - (7/22/2014 - 9:51am)

I read that all cancers are caused by genetic mutations, mostly acquired.

JerryfromFauq - (7/22/2014 - 4:22am)

Theresar,

Each of the immunotherapies work in different ways to help different parts of the immunesystem fight caners.  The anti-BRAF targeted chemos will only have a positive effect against Some of the BRAF mutations.  In the C-kit world, there are currently 4 FDA approved Targeted chemo's (Just not yet FDA approved for Melanoma.)  Different ones appear to be more effective on dfferent c-kit mutations.   I've been on one for  over 5 years now.  It has held my C-kit melanoma essentially stable for over 5 years now, since the il-2 immunotheerapy stopped beoiing effective after hold me stable for almost two years.

 

My Melanoma team is not against my trying adjuvant therapies.  One even suggested that I read up on Dr Andrew Weil's writings.  I have taken Curcumin ans tlked bout by MDA for over 5 years now,  in addition to other things.

07-11-05 - Potent Spice Works to Block Growth of Melanoma in Lab Test - News Release - MD Anderson Cancer Center

http://www.mdanderson.org/newsroom/news-releases/2005/07-11-05-potent-sp...

I'm me, not a statistic. Praying to not be one for years yet.