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.

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Uncommon BRAF Melanoma Mutation

BRAF Melanoma Mutation Sensitive to MEK Inhibitor Drug Therapy

Dagny Stuart

An uncommon mutation of the BRAF gene in melanoma patients has been found to respond to MEK inhibitor drugs, providing a rationale for routine screening and therapy in melanoma patients who harbor the BRAF L597 mutation.

The new study by co-first-authors Kimberly Brown Dahlman, Ph.D., Junfeng Xia, Ph.D., and Katherine Hutchinson, B.S., Vanderbilt-Ingram Cancer Center (VICC), Nashville, Tenn., was published online July 14 in Cancer Discovery.  The research was led by co-senior authors William Pao, M.D., Ph.D., Jeffrey Sosman, M.D., and Zhongming Zhao, Ph.D., VICC, and Antoni Ribas, M.D., Jonsson Comprehensive Cancer Center, UCLA, Los Angeles, Calif.

Mutations in BRAF V600E or KIT are common in about 40 percent to 50 percent of melanomas, and drugs that block or inhibit BRAF V600E were recently approved for treatment of melanoma patients with these mutations. However, there has been no effective treatment for patients with wildtype (WT) melanoma that is negative for these driver mutations.

To uncover other potentially targetable mutations, the investigators studied the tumor from a 75-year-old patient with an aggressive form of melanoma which was negative for the BRAF V600E mutation. They performed whole genome sequencing on the tumor, along with DNA from matched blood, and confirmed a mutation at BRAF L597.

To determine how many similar mutations might be overlooked by assessing only the BRAF V600 position, they analyzed the mutational status of 49 additional tumor samples negative for V600, as well as recurrent mutations in NRAS and KIT. Two of the tumors (4 percent) were found to have BRAF L597 mutations and a third tumor harbored a BRAF K601E mutation.

BRAF L597 and K601 are adjacent to V600.  Since V600 mutants are sensitive to both BRAF and MEK inhibitor drugs, the investigators tested whether the BRAF inhibitor drug vemurafenib and a MEK inhibitor drug could inhibit cell proliferation signals induced by these mutants in cell lines. The MEK inhibitor led to a dramatic shut down of signaling, suggesting that tumors harboring BRAF L597 and K601 mutations might benefit from treatment with MEK inhibitors.

Confirming this hypothesis, a 69-year-old patient with metastatic melanoma harboring a BRAF L597S mutation experienced significant disease shrinkage after two cycles on therapy with a MEK inhibitor drug called TAK-733, currently in Phase I clinical trials. The patient was disease progression-free after more than 24 weeks.

The authors believe these data demonstrate that BRAF L597 mutations have clinical significance in melanoma. Further study is needed to confirm these findings.

Stage III, Unknown Primary; 1 positive node in left axilla

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Gene_S's picture
Replies 8
Last reply 7/23/2012 - 8:55am

I have debated posting this news, but my wife has convinced me that it may offer hope to others on this forum! My latest scans now put me in the NED (no evidence of disease) group.  It was a tough battle and I am very grateful and hoping that other here will keep fighting this monster of a disease. I am very thankful to my God above me as well as to my family (especially my wife Judy) for this very happy day. Best wishes,  Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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deardad's picture
Replies 2
Last reply 7/22/2012 - 7:23pm
Replies by: deardad, benp

Ben just wondering how your scans went after GK.

Hoping all is good.

Nahmi from Melbourne

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RobinS's picture
Replies 2
Last reply 7/23/2012 - 10:21am
Replies by: LynnLuc, Linny


My mother has stage 3C melanoma and is looking for a vaccine clinical trial.  She is currently cancer free after removing her all lymph nodes and margins from that region.  Is anyone aware of a clinical trial using vaccines for a person who currently has no tumors?  

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saddaughter's picture
Replies 5
Last reply 7/23/2012 - 8:57am

Although I've never posted before I have been following this site since my dads melanoma recurrence last year. I wanted to say thankyou cause even though I never logged in I found an abundance of information on this site that not only helped my dad make decisions about trials but helped me understand what was going on. After dad was first diagnosed in 2003, had surgery to remove mole on chest and lymph nodes and participated in interfuron trial at RPA sydney. Went for his regular checkups and life went on. I was not aware what a nasty cancer this is and that it could come back suddenly and destroy you. After 8yrs clear came back in his brain last july. Had mets removed and WBR. Put up fight of his life but sadly list his battle on mothers day, 10 months later. Thanks so so much to everyone who posts on this forum so that those of us with no idea can be informed of the journey ahead of us. The information you provide is valuable to those who need to know the truth. Dad was diagnosed at 70 and didn't make 71 but said don't worry ive had a full life and beautiful children and grandchildren,unlike many on this forum. He was the last one in his trial to pass. He knew then how lucky he had been.

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Gene_S's picture
Replies 7
Last reply 7/21/2012 - 9:07pm
Replies by: Anonymous, Webbie73, ChrisTheWilsonZoo, natasha, Donna M.

Skin Cancer Skyrockets as Sunscreen Use Increases

The first tanning lotions were introduced around 1930. The goal was to allow you to stay in the sun longer without burning. A few years later, the melanoma rate began to rise. By the 1960s there were dozens of tanning lotions on the market. Melanoma rates continued to rise.

As the rates of skin cancer increased, it became news. And the makers of tanning lotions saw an  opportunity. They repositioned their products as "sunscreen." After that, the sales of sunscreen continued to climb... along with the rates of melanoma. In fact, the per capita melanoma rate has increased 1,800 percent since the first commercial sunscreens were introduced.

In a moment, you'll see why sunscreen is a contributing cause. But first, let's examine the evidence that sun exposure is actually your best defense against this deadly disease...

Please click here to read the rest of this article.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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chalknpens's picture
Replies 22
Last reply 7/23/2012 - 4:46pm

I saw my orthopedist today ... told him of the open wound on my arm, going for closing stitches this afternoon, as third biopsy came back with clear margins. He asked me who my oncologist was. I said I didn't have one. He said I might want to get one.

When did you get an oncologist?

I am not perfect, but I am enough.

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himynameiskevin's picture
Replies 15
Last reply 7/23/2012 - 8:51am

Hi everyone. I'm just checking in with a quick update. As the subject of this post says, I've been on Zelboraf for 4 months and 13 days now. And I think I'm feeling alright. Besides the extreme photosensitivity, I seldom have joint and muscle pain/weakness anymore. Theres been some gastrointestinal irritation,  and definitely have a bit of skin irritation - a few spots of irritation, like roughness or a goose bump type feeling. Nothing major though. I've had a slight headache (random pains that come and go quickly) and a little sinus congestion for the past two days. But I did take a short trip to my hometown, Tucson, which was 100degrees one day and thunderstorms and hail the next, and a a hotel with A/C, back to San Diego on warm day with no A/C here. I'm hoping this headache was just because of all the changes in climate.

I'd be lying if I said I wasn't scared though.

My last PET/CT was late April and my last Brain MRI was May 1st. Both of which looked good and showed that Zelboraf was working. For the most part everything feels ok, physically and neurologically, as far as I can tell. I've been off the steroid for three months now and just need my head to be clear or on the mend to maybe qualify for any trials, if there's any more out there I'd be fit for. I have PET/CT in the coming weeks and a brain MRI on Monday, coincidentally, exactly 2 years from the day my dermatologist had to break the news to me and this new life started. I'm hoping to update you all with a good report. We'll see how it goes. Thanks for hearing me out. I'll talk to you soon.

Warmly, -Kevin

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AllyNTAus's picture
Replies 11
Last reply 7/23/2013 - 8:59pm

Hi everyone, I just wanted to share a positive story about this BRAF inhibitor that I know some of you are also taking.

I have been on Dab for nearly 12 weeks, I failed entry to the BRAF/MEK inhibitor trial due to my lung condition at the time of assessment but GSK granted me compassionate access. When I started taking it, I was in need of steroids to allow me to breath properly, there were multiple small flat mucosal lesions in my lungs threatening to grow into tumors as well as one defined nodule of 4mm, and a number of my lymph nodes were significantly enlarged.

I had my first set of review scans today, and good results. All of the lymph nodes that were identified have decreased in size, eg one that was 16 x 40mm is now measuring 22 x 6mm, a 25 x 16mm is now 9 x 5mm, a 20 x 28mm is now 15 x 10mm (I won't bore you with all the measurements but you get the idea). My lungs are described as"clear with no pulmonary nodule seen". All my other organs remain clear (thankfully I hadn't developed mets anywhere else before I started Dab).

I am so relieved to have this improvement within 12 weeks and can only hope it continues. Every moment more I get with my family especially my husband and little son is so precious. And I am so greatful to the scientists and doctors who have brought about this advance.

Hoping others of you find strength for your battles.

A bad day's fishing beats a good day's work everytime

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Nell's picture
Replies 1
Last reply 7/20/2012 - 3:50pm
Replies by: RMcLegal

Is Yervoy approved for use on stage III patients, or is it only being used in trials for stage III?  It doesn't seem like there is much available for stage III...

One voice can make a song; one life can change the world.

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AZ_Gal's picture
Replies 3
Last reply 7/20/2012 - 12:17am
Replies by: gabsound, washoegal, AZ_Gal

I had my WLE and LB on Aug 5th, 2011 and almost a year later I am cancer free! YAY! However, I have some sort of cyst or fluid filled pocket in the incision where my WLE was. My PCP doesn't seem to be bothered by it and I see my Derm this coming Monday. I am supposed to be seeing a Derm every 6 months but because I live in an extremely remote area I have yet to see one since my surgery last Aug. (2011) Just wondering if any of you had ever had this problem, or heard of it. Hoping it's just fluid buildup but a little nervous. ANy help is appreciated...THANKS!

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Hello all,

Just a reminder for any mel survivors and caregivers in the central Ohio area. The James Cancer Center in Columbus now has a melanoma survivors group which meets the 3rd Wednesday of each month at 6 p.m. @ The Stephanie Spielman Breast Cancer Center.

(Search "JamesCare for Life" to get more info on this and other great cancer support groups)

Oncologists specializing in the care, treatment, and research of melanoma are frequent guests. A symposium in conjunction with MRF just started this past May and  is planned to be an annual event for those in the Ohio melanoma community.

It's just another great way to receive support from those who understand what you're going through.

Hope to see you there!


"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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Ali's picture
Replies 12
Last reply 7/20/2012 - 3:08pm

Hi guys.  I had my first dose of Yervoy and Temodar three weeks ago (after completing 6 weeks of IL-2 and the discovery of brain mets).  6 days after the infusion I developed some pretty miserable diarrhea.  At the same time, I could feel my subcutaneous tumors shrinking.  I did end up going on steroids, from which we are in the process of tapering off of. 

I went to the Dr. this week so excited to show him the tumors that were so ugly (visible and black) are now nothing more than tiny tight seeds that you had to dig deep to find.  The biggest one in my breast you can't find at all.  I do have a few small ones hanging around, but the biggest news is, I haven't felt anything new in the last 3 weeks (that has not been the pattern).

I assumed this was the Temodar at work, as I understood IPI takes a while to kick in.  When I mentioned this he said the Temodar isn't that potent of a chemotherapy, that this is likely a reaction from the IPI.  AWESOME!!!  Now I just need to be able to wean from the steroids and we try again in a few weeks, and hope that what is happening on the surface is happening all over, brain included. 

I have scans again in September.  There was a point I didn't know if I would ever see a September.  What a roller coaster! 

Thanks for all your courageous examples. 

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Lenusya's picture
Replies 3
Last reply 10/22/2012 - 12:14pm
Replies by: POW, MLAZAR, Anonymous

Dear Community members,

I live in Russia and my cousin was diagnosed with melanoma 2 years ago. After two surgeries and series of chemotherapy the Doctor's prescription is Zelboraf, but it's unavailable in our country.

Do you know if there is any chance for foreigners to get it from the USA, Canada or any other country?

I would be very grateful if you could recommend any reliable e-shops, pharmacies, etc.. in your countries. Please advise.

If there is no delivery I am ready to come and buy it by myself, still I need to know where and if it is sold to foreigners...

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Ronskidtexx's picture
Replies 9
Last reply 7/23/2012 - 9:34pm
Replies by: Ronskidtexx, Anonymous, ScagMom, KRob, Linny, awillett1991

I had surgery March 5th to remove melanoma tumors from neck (dissection) and from soft mass near rib cage. I had 5 radiation treatments to neck area. As of mid July, with recent scans, I am NED. No further treatments are scheduled. Is this normal? Just scans every 3 months? My head and neck surgeon said "see you in 6 months." I am going to MD Anderson here in Houston, so I feel I am in good hands. My oncologist feels Interferon would not benefit me and why put me through the effects. I do feel blessed with the NED status but the fear does not go away. With the neck dissection, 57 lymph nodes were taken out-all clear of melanoma. I have an unknown primary as well. I am walking around like nothing ever happened. The fear factor gets to me, though.

Just wanted to get a little feedback on lack of follow up treatments not being administered or if this is common.

My story of my journey can be found at Aim at Melanoma, Survivors stories, Stage IV. I will friend you in Facebook as well.

God bless,

Ron Whelchel

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