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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Landslide45's picture
Replies 2
Last reply 9/19/2013 - 4:03pm

I have a side effect question for the group. My Dad (stage IV) has had mild neuropathy off and on since beginning interferon treatment last summer. He is now in a 3mg clinical trial of Ipilimumab, and this week (he is between his 2nd and 3rd doses) the neuropathy has gotten severe and made it very difficult for him to walk. He is having a brain MRI tomorrow but in the meantime we are anxious to know if folks have had similar experiences and how likely this might be a treatment side effect vs being tumor-related.

Anyone have any thoughts or advice? Anyone have tips on how to handle neuropathy symptoms?  Thanks in advance--this board has been a major source of hope and knowledge for our family as we try to fight this nasty disease!

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sbrooks90's picture
Replies 5
Last reply 9/20/2013 - 9:01pm

Hi Guys,

Just wanted to get a sense of what treatment options are out there for Stage III (Besides IFN-a). I had my CLND last week and am waiting for the results on that so I can be properly staged. Has anyone had experience with radiation? My surgical oncologist said that is an option if 3 or more lymph nodes are positive. I know a lot of these treatments are in clinical trials but would like to see what other people have gone through. This board is full really smart individuals!




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Rebecca and Bob's picture
Replies 9
Last reply 9/18/2013 - 5:04pm
Replies by: NYKaren, HopefulOne, JoshF, Rebecca and Bob, Anonymous, POW, sbrooks90

We had a scare today with scans. The doctors thought that a spot on my husband's spine might be melanoma so we had to do another scan MRI of the back to check it closer. It ended up being inflamation. We were so relieved words cannot even express it. My husband progressed to stage IV when our kids were 1 and 3 years old. Here we are 7 years later, 3 of those years spent working towards NED. This has been such an emotional roller coaster ride, but we are thankful each day that we have enjoyed and spent doing things with the kids and that he is here for them.

I just wanted to share some good news.



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d0771's picture
Replies 2
Last reply 9/17/2013 - 10:12pm
Replies by: d0771, Janner

I have looked up all the terms, and have a general idea of what it means, and also asked my derm to translate into plain english, but would still like the thoughts of those on the board who have gone through this as well.  


Final Microscopic Diagnosis:

A. Left lateral back, Punch Biopsy:

Melanoma In Situ arising in association with an intradermal nevus, extending to lateral margins.


Comment:  Sections show a central melanocytic proliferation of maturing and small dermal melanocytes.  In the overlying epidermis, adjacent to the dome of the nevus there is an asymmetric and poorly circumscribed intraepidermal melanocyctic proliferation.  The lesion desplays confluent melanocytes with marked cytologic atypia and pagetold scatter.  In a focus confluent atypical melanocytes extend far down along an adnexal structure.  The lesion is present on sun-damaged skin.

MART-1 and MITF Immunostains support the above findings.  Initial and level sections were examined.  The above findings represent the consensus opinion of the dermatopathologists present at the daily case conference.


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How many more mutations to be found in the  30% of melanoma's that they don't know what mutation has occurred  in?

Mutations drive malignant melanoma
Discoveries found in 'dark matter' of cancer genome

By Bill Schaller , Dana-Farber Cancer Institute Communications

Two mutations that collectively occur in 71 percent of malignant melanoma tumors have been discovered in what scientists call the “dark matter” of the cancer genome, where cancer-related mutations haven’t been previously found.

Reporting their findings in the Jan. 24 issue of Science Express, Harvard Medical School (HMS) researchers at the Dana-Farber Cancer Institute and researchers at the Broad Institute said the highly “recurrent” mutations — occurring in the tumors of many people — may be the most common mutations in melanoma cells found to date.

The researchers said these cancer-associated mutations are the first to be discovered in the vast regions of DNA in cancer cells that do not contain genetic instructions for making proteins. The mutations are located in non-protein-coding DNA that regulates the activity of genes.

This non-coding DNA, much of which was previously dismissed as “junk,” accounts for 99 percent of a cell’s genome. A large number of oncogenic mutations in cancer have been identified in the past several decades, but all have been found within the actual genetic blueprints for proteins.

“This new finding represents an initial foray into the ‘dark matter’ of the cancer genome,” said Levi Garraway, HMS associate professor of medicine and the article’s senior author.

“In addition, this represents the discovery of two of the most prevalent melanoma gene mutations. Considered as a whole, these two TERT promoter mutations are even more common than BRAF mutations in melanoma. Altogether, this discovery could cause us to think more creatively about the possible benefits of targeting TERT in cancer treatment or prevention,” Garraway said.

The mutations affect a promoter region — a stretch of DNA code that regulates the expression of a gene — adjacent to the TERT gene. TERT contains the recipe for making telomerase reverse transcriptase, an enzyme that can make cells virtually immortal, and is often found overexpressed in cancer cells. A promoter region of DNA controls the rate of a gene’s transcription — the copying of its DNA recipe into a message used by the cell to manufacture a protein.

“We think these mutations in the promoter region are potentially one way the TERT gene can be activated,” said Franklin Huang, an HMS clinical fellow in medicine and co-first author of the report along with Harvard M.D.-Ph.D. student Eran Hodis.

To investigate the mutation’s effect, the researchers hooked the mutant TERT promoter to a gene that makes luciferase, a light-emitting protein. They observed that the mutant promoter increased the production of luciferase in laboratory cell lines. In the same way, the scientists presume, the mutant promoter in human pigmented skin cells can send the TERT gene into overdrive, potentially contributing to the development of melanoma.

The mutations were discovered when the scientists sifted through data from whole-genome sequencing of malignant melanoma tumors. Unlike “whole-exome” searches that examine only the protein-coding DNA of a cell’s genome, whole-genome searches scan all the DNA, including the non-coding regions.

In analyzing whole-genome data, the investigators discovered the two somatic, or not-inherited, mutations in 17 of 19 (89 percent) of the tumors. Next, they sequenced a larger number of melanoma tumors and found that the two mutations were present in 71 percent of tumors in total.

The researchers said the same mutations are present in cell lines from some other malignancies, and that preliminary evidence showed they might be unusually common in bladder and liver cancers. They also noted that the discovery of these important mutations in DNA previously not linked to cancer-causing alterations highlights the value of whole-genome searches of tumor DNA.

Other authors include Mary Jue Xu, a student at Harvard Medical School; Gregory V. Kryukov of the Broad; and Lynda Chin of MD Anderson Cancer Center.

The research was supported in part by the National Institutes of Health, the Mittelman Family Fellowship, the American Cancer Society, the Novartis Institutes for Biomedical Research, the Melanoma Research Alliance, and the Starr Cancer Consortium.

This article was adapted from a Dana-Farber Cancer Institute news release.

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

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JoshF's picture
Replies 4
Last reply 9/18/2013 - 9:33am

Had re-excision of rt cheek today. Pulled 2 lesions suspected to be lymphnodes. Both pink & white in color. One was 7mm the other was 4mm. Waiting on biopsy results but given they were right under scar, it has to be melanoma. Guessing this would put me at Stage IIIC? Fun part is waiting to hear news....ugh!!


Let's work for better treatments....for a cure!!!!

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lidiapeters's picture
Replies 4
Last reply 9/18/2013 - 1:08am


1 shave/ excisional biopsy, right chest


SCO one piece of shave/ excisional biopsy tissue from the right chest measuring 0.8 x 0.6 x 0.1cm

the specimen is trisected and all tissue embedded.


Multiple serial sections of the submitted skin biopsy sample have been examined. There is a somewhat asymmetrical 4 to 5 mm diameter melanocytic lesion in the center of the skin surface. Most of the S-100 protein positive nevus cells are seen in the dermis and there is associated marked lymphocytic infiltrate suggesting some degree of regression. A few junctional nests are noted. These are epithelloid cells with larger nuclei and nucleoli. Biopsy findings suggest the so called Spark's nevus (ie, nevus with features of Spitz nevus and Clarks nevus). Considering older age and histological atypia with some dermal nevus cells present at the dermal margin focally, conservative re-excision of the lesional area recommended.






Can anyone explain this?, All my dermatologist said is I do not have skin cancer, but said he saved my life?...mixed message?? and I am confused and scared and don't really understand my pathology report, anyone familiar with these finding? Any help I can get in understanding my pathology a little better would be much appreciated! 

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Replies by: HopefulOne, Anonymous, POW, Tracy Chicago, JoshF

I'm 4 yrs NED from stage 3 melanoma (woot woot!) but now I'm experiencing similar problems that I had right before my stage 3 diagnosis (nausea and bad bowel movements after every time I eat). It's been going on for four days. Would you call your oncologist or your regular doctor? I'm feeling nervous about this!

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Anonymous's picture
Replies 1
Last reply 9/16/2013 - 8:04pm
Replies by: blden2186

Hi All-

Looking for info on studies or personal experiences with re-occurrence. Key points I'm looking at

-What are chances of 2nd or 3rd reoccurrence after intial reoccurence? Is Melanoma that comes back more aggressive?

-If BRAF mutation is present or other mutations, are chances of reocurrence higher?

-What treatments are suggested and anyone have experience on specfic treatments? Sounds like interferon makes patient give up some quality of life for little to no benefit.

-Are lymph nodes typically involved in reoccurence?

There is a lot of mixed information in regards to reoccurence. Some things I've saw states it's worst thing possible and there is no cure for patient once melanoma reoccures. I met a surgeon through a melanoma clinic at OSU that says reoccurence though not good doesn't mean patient won't have chance of a long productive life. He said to the contrary that many people live long lives and that more treatments are on the horizon.

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 4
Last reply 10/23/2014 - 4:51pm
Replies by: tsykes1, HopefulOne, POW, Janner

Good afternoon, I received my pathology report on 8/26/13 and was instantly seen again for removal of a melanoma in-situ. They told me not to panic and that is was all good but I would expect 3 month follow ups for 2 years. I am concerned because everyone around me tells me it's not a big deal but I read words within my report that unnerves me plus the re-excision was quite large (5mm). This is what I had, please let me know (opinons of course) on if I should be concerned or just consider it all taken care of.... " 2mm dark brown macule found to be malignant melanoma. 2x2x1 area of skin initially removed for study. atrophic epidermis with flattened rete, increased number of melanconsytes at the base of epidermis. Tehre is 'buckshot scatter' of these cells into the upper epidermis. The melanocytes course down the hair follicles. There is no dermal invasion but marked solar elastosi. There is a scattered lymphoid infiltrate..... " So they took 5mm the other day in the area.

From what I've read, that seems to be quite a bit for a 2mm, no staged melanoma in-situ. Any feedback?

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Tim--MRF's picture
Replies 6
Last reply 9/17/2013 - 6:47pm
Replies by: POW, aldakota22, Anonymous

The GSK combination of a BRAF inhibitor and MEK inhibitor has been granted priority review by the FDA:

The review is scheduled by January.

What does this mean?  About half of people with melanoma have tumors with a mutation in BRAF, a critical step in a series of signals that transmit information from the cell wall to the cell nucleus.  In these mutations the BRAF signal is stuck in the "on" position, causing the cell to grow and divide out of control.

Genentech put a drug on the market in 2011 (vemurafenib, Zelboraf, or "Z") that shuts down the BRAF signal.  It works very quickly and very well, but typically only for a few months.  GSK developed their own BRAF inhibitor (dabrafenib or Tafinlar), but also tested the drug in combination with another drug that blocks MEK (trametinib or Mekinist) the next step in the signaling pathway.  The thinking is that by blocking both BRAF and MEK you can impede the cell's ability to become resistant to the drug.

Despite the data being very strong, GSK applied for approval of their BRAF and MEK inhibitors as single agents.  Prescribing them in combination would be considered off label and might not be covered by insurance.  Now they have gone back to the FDA asking for approval of the combination.  The FDA has said the data are sufficiently strong that the should fast-track the review and get it approved as quickly as possible.

This means that a better treatment will be more readily available for patients.  It is also another indication of the importance of combinations.  The MRF has been pushing for more combination studies for years, and even created a special Consortium to facilitate combination trials.


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d0771's picture
Replies 8
Last reply 9/18/2013 - 9:40pm
Replies by: POW, d0771

I am new to this board, and have been reading it extensively for the last few days.  I was first diagnosed with melanoma this past Friday.  I am in the Dallas / Ft Worth area of Texas.

A brief history.  Approximately 9 months ago I went to my dermatologist due to an odd growth on my back.  While it  turned out to be benign, they decided to biopsy 2 other moles.  One came back benign, the other came back mild-mid atypical I believe.  I had a followup after 3 months, and this past monday was my six month follow up.  The doctor decide that one mole on my upper left back needed to come off,  I thought nothing of it at the time, and actually forgot about it until I got the call on Friday and was told that I had Melanoma in situ, and that I neeed to wider excision to check margins.  

After doing extensive reading, I do know that if you are going to have melanoma, in situ is the place to be.  Of course this has also made me much more paranoid about whether my diagnosis is correct, what I should be doing to "be my own advocate", which I read about often here, and just generally what questions I should be asking and what I should be doing.

These past exams were not full body exams, they only examined me with my shirt off.  Since my diagnoses, I have examined my entire body, and have found one spot on the back of my left leg that appears slightly suspicious to me.  Fairly symmetrical, not raised, a bit smaller than a pencil eraser tip (if I hold it over the mole it cannot be seen,but does have brown coloring variations, and just looks a little different form the rest.  

My wide excision is scheduled for Monday. Only odd thing about it is, due to scheduling of the office, my options were to schedule later in the week at my regular office, or go to their other office and have the procedure done tomorrow afternoon.  Is there any reason that I would need to make sure that the same person who did the original biopsy performs the follow up procedure?  

Aside from bringing up the other locations I find suspect at my appointment tomorrow, I am told that an appointment for a full body skin exam cannot be scheduled until the end of the month.  Should I be pushing for it earlier than that?  Should I be pushing for that to be done at my procedure tomorrow? (I am told they block out an hour)

I do not have my biopsy results, I was only given the news over the phone.  But as posted, I was told it is Melanoma in situ.  A question on this. Does this mean that during the biopsy, they were able to determine that there were clear borders around the biopsy itself?  So essentially I should already have clear margins(the entire melanoma was removed), but the wider excision is to further test / ensure that they got it all?


Thank you so much for reading my long post and any answers and guidance you can provide. 


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Kathy520's picture
Replies 9
Last reply 9/15/2013 - 8:27pm
Replies by: Janner, Kathy520, Anonymous

I have a question about melanoma, I just had a melanoma removed from my left upper abdominal area in situ stage 2 ,I also have a family history of melanoma . Should I be asking for testing or any other treatment?

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TSchulz's picture
Replies 3
Last reply 9/18/2013 - 4:51pm

Hello everyone, 

I have not been very active on this board the past several months and truly hope there is more positive than negative news flowing through the postings.  All the people who share here are heroes in my mind and helped me and my family through the darkest of times.  I'll be forever grateful.  

I wanted to share my most recent positive news - although a little old now.  My last trip to NIH in follow-up to my ACT/TIL treatment in May 2012 was the first week of August.  After the usual labs and scans the doctors, again, shared that my melanoma was not seen and I remain with no evidence of disease.  

Those words, have made life move forward again  for us - cautiously forward.  

All the very best to everyone out there dealing with this terrible disease and a special thank you to everyone who is enrolled in a clinical trial - it is because of us that there will, one day, be a solution to melanoma.  


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