MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Anonymous's picture
Replies 3
Last reply 12/4/2014 - 2:11pm
Replies by: Anonymous, Jubes, jenny22

about a year ago I reached out for some answers I was told I had melanoma didn't know much just had stage 1 well had a large excision done margin clear, I was told to go about life and not worry kept my appointment with dermatology every three months. Well to make a log story short I have had a lot dysplastic moles removed but know the lastest is stage 2 and near the same site as my first melanoma. I go for surgical consiltation the 18th dermatoligist says I need a surgeon for this one. waiting for my pathology report to be mailed to me so I can know exactly the measurements and everything . Just had to let it out I lost my mother to this awful disease in 1993. I will not just go about life I will fight

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RJoeyB's picture
Replies 13
Last reply 12/17/2014 - 8:01am

Hello friends,

I'll have to fill in the details later, but for those of you who know my recent background dealing with ups and downs from radiation necrosis over the past six months as a result of CyberKnife from almost two years ago, l had a significant decline in left side motor control deficits and impact of Decadron steroid side effects over the past week.  After much deliberation, we decided to move forward with a second craniotomy which was moved up from tomorrow to today for simple scheduling reasons.  Most of my team of doctors still believe this is necrosis and not recurrent tumor, although there is a possibility it's both, but surgery will get both, regardless.  We're hopeful that the physical deficits that have affected the use of my left arm, hand, leg, and foot, will not be permanent and that the powerful effects of prolonged (6+ months) Decadron use will resolve soon as I'm able to taper down after surgery.

I will post more for the group later as there are some lessons to be learned, but wanted to ask you all for your thoughts and prayers today as we await an actual start time and go over this not completely unexpected bump in the road.

Best, Joe


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JerryfromFauq's picture
Replies 1
Last reply 12/3/2014 - 9:20am
Replies by: JerryfromFauq

Ipilimumab in pretreated patients with unresectable or metastatic cutaneous, uveal and mucosal melanoma.
In an Australian clinical practice setting, ipilimumab achieved efficacy and tolerability measures similar to those reported in clinical trials. The frequency and severity of ipilimumab-related AEs (including death) are notable, and treatment should occur under the supervision of an experienced clinical team.

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

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Oncol Lett. 2014 Jul;8(1):47-54. Epub 2014 May 8.

Molecular alterations in clinical stage III cutaneous melanoma: Correlation with clinicopathological features and patient outcome.


The aim of the present study was to evaluate the frequency and type of oncogenic v-raf murine sarcoma viral oncogene homolog B1 (BRAF)/neuroblastoma RAS viral (v-ras) oncogene homolog (NRAS) mutations in cutaneous melanoma with clinically detected nodal metastases (stage IIIB and C) in relation to clinicopathological features and outcome. The clinicopathological data of 250 patients following therapeutic lymphadenectomy (LND) between 1995 and 2010, as well as BRAF/NRAS mutational status in corresponding nodal metastases, were analyzed. The median follow-up time was 53 months. BRAF mutations were detected in 154 (62%) cases (141 p.V600E, nine p.V600K and four others) and mutually exclusive NRAS mutations were detected in 42 (17%) cases. The presence of a BRAF mutation was found to correlate with patients of a younger age. The five-year overall survival (OS) rate was 33 and 43% for LND and primary tumor excision, respectively, and the five-year disease-free survival (DFS) rate for LND was 25%. No correlation was identified between BRAF/NRAS mutational status and RFS or OS (calculated from the date of the LND and primary tumor excision); for BRAF- and NRAS-mutated melanoma, the prognosis was the same for patients with wild-type (WT) melanoma. The important factors which had a negative impact on OS and DFS were as follows: Male gender, >1 metastatic lymph node and extracapsular extension of nodal metastases. The interval between the diagnosis of the initial melanoma to regional nodal metastasis (median, 10 months) was not significantly different between BRAF-mutant and -WT patients. Our largest comprehensive molecular analysis of clinical stage III melanoma revealed that BRAF and NRAS mutational status is not a prognostic marker in stage III melanoma patients with macroscopic nodal involvement, but may have implications for potential adjuvant therapy.


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

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JerryfromFauq's picture
Replies 1
Last reply 12/3/2014 - 11:08am
Replies by: CHD

Treatment algorithm of metastatic mucosal melanoma

Abstract: Mucosal melanoma is usually considered as the most aggressive and treatment-resistant subtype of melanoma. The unsatisfactory results of standard clinical therapies for metastatic melanoma highlight the needs for effective new therapeutic strategies. Recent successes in the development of new therapies for metastatic melanoma, such as inhibitors for mitogen-activated protein kinase (MAPK) pathway and blocking antibodies against cytotoxic T-lymphocyte-associated antigen-4 (CTLA-4) or programmed cell death protein-1 (PD-1)/programmed cell death-ligand 1 (PD-L1) pathway, have yielded promising results, expanding the continually evolving landscape of therapeutic options for patients with this disease. In this chapter we review chemotherapies, immunotherapies, targeted therapies and angiogenesis therapies in metastatic mucosal melanoma and discuss their implications.

Keywords: Mucosal melanoma; chemotherapy; targeted therapy; immunotherapy

Submitted Apr 30, 2014. Accepted for publication Aug 13, 2014.


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

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Can they keep the anti-BRAF drugs working longer? -------------------…/melanoma-treatment-2014-eme…/

Finally, there are some hopeful developments for melanoma patients whose tumors have mutations in the BRAF protein (as detected by molecular testing). A recent study published in the scientific journal Nature determined that the mutant BRAF protein relies on copper for its cancer-promoting activity. The U.S. Food and Drug Administration (FDA) has already approved drugs that lower levels of copper in the body to treat a metabolic disorder known as Wilson disease. (Wilson disease is a genetically based inability to filter out and get rid of excess copper.) In a remarkable example of a quick transition from basic science to clinical investigation, Duke University (where the original research was performed) has opened a clinical trial that will test if lowering copper levels with an FDA-approved drug trientine may improve outcomes for patients taking the drug vemurafenib to treat their melanomas.

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

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Markers to help Predict TIL success?

PD-1 identifies the patient-specific CD8+ tumor-reactive repertoire infiltrating human tumors

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

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Ninniditti's picture
Replies 1
Last reply 12/3/2014 - 11:22am
Replies by: arthurjedi007

Hi! After nivo and ipi I only had one treatment left, dacarbazine. I didn't belive much in that but as the only option I started dcb in october. I have melanoma in my sinus on both sides one had breaken through the skullbone tuching the brain. I had a lot of pain and was tired all the time. The last weeks the pain is almost gone and the MR this week showed that my tumores hadn't grown at all in two months and the tiny metastas I had in my lung was gone. I now hope that my tumors wil stay stable until some new treatment come up, a treatment that doesn't involve immunoterapi. I think about vaccines injected directly into the tumur like T-VECK. I am so confused as I didm't except any advantage of dacarbazine and now I am optimistic about celebrating christmas. I really wish all of you a wonderful advent and christmas!


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Replies by: JerryfromFauq

Hello, this is my first post here. So recently I read a study that shows that (even one time) users Viagra seem to incur higher rates of melanoma. This was only a correlational study, but the correlation was found with melanoma specifically, not other forms of skin cancer which may become more common with age. Interest in this research was ignited when scientists noted that, essentially, Viagra (and other drugs similar to Viagra such as Levitra/Cialis/Staxyn) mimics the process melanoma uses for spreading. This terrifies me because was diagnosed with in situ melanoma at age 17 (around 2010). Since then, I have had a number of moles containing “atypical cells” removed. I have always been uneasy about the fact that threatening moles keep popping up, despite the fact I have no family history and I have always stayed indoors.

Possibly also concerning, I have been prescribed Viagra and Staxyn in the last year. As soon as I read this research, I ceased consumption of any ED medications in the interest of not dying. My intention is to spread awareness about this research. A rational person would not freak out upon reading correlational research, but I only recently became serious about avoiding the sun by all means at my disposal. This includes wearing UV protected clothing and wearing sun screen at all points of the day/night/year. So I became very discouraged when I read that a medicine I was taking MAY increase my chance of melanoma. It such a random factor; I couldn’t have possibly predicted this type of thing. Has anyone heard about this? Can any experts chime in? I have no idea who browses these boards. Thank you for reading and spread the word please. You will have to Google the study to find it. I do not know this forum's policy on linking outside sources.

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Mat's picture
Replies 3
Last reply 12/4/2014 - 12:43am

I'm posting this because the MRF folks (presumably) read our posts.  My posts are continuously being bounced by your spam blocker.  Very annoying.  Makes one think time (and $) is better spent on the MIF site than here.

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Kmiles's picture
Replies 5
Last reply 12/11/2014 - 11:14pm
Replies by: brittanyx, Anonymous, Ed Williams, Kmiles, Marianne quinn

Today I got my results from SNLB.  Both my right and left side showed cancer.  I will have the complete lymph node dissection between Christmas and New Years.  Can anyone tell me what this will be like?  Also they are suggesting interferon.  I'm in the beginning research search so anything you guys can tell me is VERY much appreciated.  

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arthurjedi007's picture
Replies 13
Last reply 12/4/2014 - 6:09am

Well I really like my radiation onc doc. He is very optimistic. He thinks my walking issue has to do with the tumors in my hip where the bone and socket meet. He thinks if he radiates that ball and socket area it should go a long way with helping me walk good again. I mentioned the tumor in my knee my med onc doc talked about. He double checked and said there is a small tumor there so he will take care of it too.

He also mentioned there are some things going on with my lower spine that might be pressing on nerves but he wants to try the other first. He also did the same leg, feet, arm, hand test they kept doing over and over last winter when I was almost paralyzed so he doesn't believe it is an issue with my spinal cord or spine tumors so that is a huge relief.

There will be 10 zaps. He thinks I should start walking better after the 3rd zap. I hope so. I get scanned and targeted tomorrow with Thursday as the tentative date for the first zap but they aren't sure yet.




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StephyD83's picture
Replies 10
Last reply 12/5/2014 - 6:16am

Hi Everyone-

I went to UCSF Melanoma Center yesterday for a 2nd opinion & they reviewed all of my pathology slides. They found that I never had a Severely Atypical Mole that was not re-excised & turned into Melanoma InSitu like I had thought. It turns out that 2 years ago it was actually Invasive Melanoma 0.4 mm in thickness, extending intraepidermally to the peripheral margin Stage 1A.

So the Invasive Melanoma was left on my face for 17+ months & retaken out 2 more times this past March & now I am being told that I need to have another surgery because I have never had the proper margins of 1 cm I only have 5 mm at this point.

I also showed her that my PET/CT Scan light up on a few areas my Spine, Ovaries, Lymph Nodes under both of my arms, & my right knee. She said this needs to be looked into.

What do you all think of this?


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sgrain's picture
Replies 3
Last reply 12/3/2014 - 7:13am

Thanks to all that responded to my earlier PD-1 posts.  After being pulled off PD-1 after 3 infusions, I met with Dr. Dronka at Mayo Clinic in Rochester, MN.  Her recommendation was to stay on PD-1 for 3 more cycles and redo PET scan.  She also said that sometimes things get worse before they get better with these new drugs so patience is key.

She ran the PD-1 trials at Mayo and one of her patients in 2009 was expected to have only a couple of months to live.  He was on the trial for 2 years and is currently doing fine.  He still has some tumors but they are not growing or affecting his life in any way.  She's very encouraged by the trial results she's been seeing so I'm going back on it and following her advice.

I'll post later with PET results in a couple months.  Sounds promising though.  Good luck to all and thanks again for your earlier feedback.  It really supported what she was recommending.

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jenny22's picture
Replies 17
Last reply 12/4/2014 - 9:43am

I wanted to write and again say thank you to all those who repsonded to my VERY first post recently.

I had presented my history and current situation.....Now have addtional info and would love to hear any further thoughts.

Got all the scans back and ALL were negative (Brain MRI and CTS of neck, chest, ab, and pelvis) no distant mets, calling it in transmit mets......Only thing is cannot confirm stage IIIB or IIIC, since no way to know about LN......(explained in my first post, I was never able to have a SNB due to cosmetic surgery ....) Even asked again now and was told no way to do any type of LN sampling as everything has been so "rearranged" that is why cant confirm IIIb or IIIC.....

I need to have additional surgery for one of the 2 small mets that needs some further excision. 

Now, to my question.....I met with MED ONC at NYU yesteray (ana pavllick....loved her)

Since i would be considered NED after upcoming surgery she said she wouldnt treat other than a vaccine trial which i could start in  january, and then have close surveillance, scans etc......I am concerned about no treatment and just surgeon at Sloan (dr. Coit) told me it is MORE LIKELY THAN NOT that these recurrences will come back again.....I asked about adjuvant treatment to help prevent recurrences in this setting and sounds like clinical trials are only options....BUT NYU onc said she would not treat now, other than vaccine . 

I am seeing Michael Postow at Sloan on thursday and will get his opinion. Surgery is scheduled for saturday.

I was told last year I had a VERY LOW probablitlriy of recurrence based on a1.5 mm melanoma, and now am stage III with intransmit mets....hard to do nothing but wait for this to come back.

Just wondered what others thoughts would be.

This site is invaluable and thanks to all to have been here longer.




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