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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New webinar on MIF.  It's titled "Melanoma 101" and as the name somewhat indicates, those that have been in the game for a while may not learn anything new.  However, the longer it goes the better it gets and toward the end there was some pretty interesting information.  The first 30 minutes is more prevention but after that it gets to treatments which Stage IVers will find more relevent.


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Anonymous's picture
Replies 4
Last reply 12/5/2014 - 11:31am
Replies by: StephyD83, Janner

Hi Everyone-

I wanted to get everyones opinion on this. How likely is it that I can have matestis since the Shave biopsy that was done in November 2012 was said to be Severly Atypical and never removed any further when in fact it was Stage 1A .4mm with occasional mitotic figures & peripheral margins involved. It wasnt until March 2014 that I had the re-excision and it was found to be a Scar with residual Melaonma In Situ extending to within 1 mm of the peripheral margin and it says that the dermis is alteres by a moderate degree of solar elastosis.

So now it has been 2 years & I still do not have the propert 1 cm margins as of yet.

Any advise is welcomed.


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kalisama's picture
Replies 6
Last reply 12/8/2014 - 8:33am
Replies by: kalisama, ncdaniel, mary1233

landed in the hospital, when i thought i was going for a final yervoy treatment. my body had other ideas. still looking towards starting the Keytruda, but am focusing on getting my strength back for a few weeks first.

question, we haven't heard about Temador in many years. my onc is suggesting i go on this due to my proclivative towards brain mets and LMD. he is suggesting i start this now and use it in combo with the PD1/

this is starting to sound a bit mad scientist to me. has anyone with brain mets here had any success with Temador. i've searched the forums and while people were having some success, this was quite a while ago. there were threads of people combining with early PD1 trials but i found little follow up.

if anyone has gone this route or has thoughts about it, i am very open to hearing.

as always, thank you in advance and bless,

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michaelinsocal's picture
Replies 2
Last reply 12/4/2014 - 11:16pm
Replies by: KMick, BrianP

Hello all. It's been one year since my diagnosis of maligement melanoma just before Thanksgiving of 2013. 

The primary was contained in a pinto size growth I had on the outer part of my left ankle, just below the ankle bone. The site was given a breslow depth of 4.2mm. What was unique in my case was that I had the growth since my early 20's. It appeared on the left side of my ankle and grew rather quickly (within 2-3 years) and then stopped. For 20 years it never changed shape or color. It was looked at from previous doctors as nothing to be concerned about. In September 2013, I had a hernia repair surgery. For the first fee weeks my wife had to help me put on socks and that's when she noticed a tiny speck of black smack in the middle of my growth. With her encouragement, I went to my primary doctor who shaved it which led to the diagnosis.

In Dec 2013 I had a WLE done along with a SNB with a subsequent skin Granth to cover up the half dollar size area created by the WLE. The sentinel node biopsy came back for micro traces of melanoma in the lymph node. That lead to a full lymph node dessection on the left side of my groin. The good news in all this was none of the 12 lymph nodes removed were maligement. I'm officially stage 3A. Being off my feet for nearly two months and the physical therapy after the dessection were definite challenges but I weathered it.

I opted to do the 12 month Interferon. I'm half way through it now. The first 3 weeks of high dosage was a roller coaster. By the fourth week I had such bad anxiety, depression and flu like symptoms the Dr had to stop the high dosage and gave me a two week break. Since then it's been weekly self injected shots which have been tolerable and have been put on Remeron (anti depressant) and take Ativan as needed for the axiety.

Some days are better than others. I know see my oncologist every three months along with my dermatologist as well as follow up with my surgical oncologist. 

I realize I am at high risk for reoccurrence but I'm keeping my head up and living my life. I feel I have a good team of doctors watching me. I'm vigilant and so should you. Once we learn to conquer the reality that we'll love with this disease the rest of our lives, the better we can not let it dominate our lives. I'm 41 years old and not ready to leave this earth.


So there you have it. Live life to the fullest!


PS if anyone near me in the Coachella valley portion of Southern California has recently been diagnosed, I recommend the following Doctors. 

Dr Hyams surgical oncologist

Dr Amy Law Oncologist

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Guide to Stereotactic Radiosurgery -------

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

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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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