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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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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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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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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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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MeNDave's picture
Replies 22
Last reply 7/21/2012 - 11:40pm

It is with a broken heart that I tell you that Dave passed away last night at 6:29 pm with me and his two best friends by his side.  He was my best friend and the love of my life. I will miss him forever.

Because our local hospice does not do iv pain management, we were unable to bring him home with us.  But because of David - that will change.  Not only is Roswell pushing for a palliative care floor in the hospital (they pulled some strings to keep him there where he was comfortable and free of pain), but a whole communitly is working towards changing the hospice services offered to our small community.  I cannot think of a better legacy for David.

My caregiving duties will not stop - I will always continue to offer support to other cancer patients and their families.  He fought until the end, and I could not be more proud to have been his wife for the last 16 years.  Not once did he complain, or ask "why me".  He is the most amazing person I've ever met.

To all my fellow warriors out there ,  I ask this of you: do not let melanoma take a single day from you. 

Much love to all of you... and please, please, remember - DON'T EVER GIVE UP!!



Don't ever, EVER, give up!

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jmbaer's picture
Replies 4
Last reply 7/21/2012 - 10:06pm

My dad started in July 2011 with a retinal detachment.

- Opthomologist found a tumor causing the detachment.

-Sent to Wills for radio therapy.

-Lung Met found and resected Sept 11.

-Lung met reappeared and resected again. Oct 11

-Jan 12, started to have some weakness on left side.. went for a mri and pt scan. and found a brain met.

-Did cyber knife to the brain met.

-A couple more spots showed up in his body. One larger one on his adrenal gland.

-Started Yervoy in March 2012.

-July 1 had gamma knife for new spots in brain.

-Had a Pt scan last week July 10th 2012  that showed a few more spots and the adrenal gland spot got larger and dr feels the yervoy didn't work.


Dad is 70yrs old and strong.


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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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Anonymous's picture
Replies 13
Last reply 7/21/2012 - 1:39pm

My daughter is currently planning to joinIng the current Stage 3 Yervoy trial, assuming we are lucky enough to get it. We have two questions for current  participants:

1) She just got a second opinion and we learned that the trial dosage of ipi is a lot higher than the approved dosage used to treat Stage 4, making it quite a bit more toxic. 15% supposedly get a severe reaction. Has anyone experienced this and had to drop out because of the toxicity?

2) We have heard so many stories on this site from people who took lnterferon and relapsed during the treatment or shortly after. This is one factor in my daugther choosing not to take it. We haven't come across any similar stories for the ipi trial participants. Since there isn't data available yet on relapse rates, we'd appreciate hearing about relapses during or after ipi treatment, or better yet, hearing about staying NED after treatment.

Thanks for any information you can share with us.


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shannonwittgruber's picture
Replies 2
Last reply 7/21/2012 - 4:23am
Replies by: shannonwittgruber, Fen

Quick history: Dad has Stage IV melanoma in his spine, lungs, breast and kidney. This is dad's 3rd recurrence since his original DX in 2007. Currently severe compression in the spine. Surgery last week to reduce the size of the tumor that was fairly unsuccessful because of perfuse bleeding once they got to the tumor.

My Father had zelboraf delivered to his home today and the instructions say to start taking it....
Dad Is on Paxil (antidepressant) and we have been warned of the interactions with these 2 meds. The withdrawal from paxil is just awful and dad is really scared and lost as far as what to do now. Been trying to get ahold of the Family DR and Pharmacist all day and we have gotten no answers.
Wondering if anyone has been through a similar situation or knows what to do here. Also wondering if Dad can be put on another Anti depressant that wont interact with the Zelboraf and lessen the withdrawal symptoms of the paxil.

I already tried the manufacturer and got nowhere because im not in the USA, the Canadian rep has no answers.

Please respond if you know the answer or know how I can find out the answer. Also what Antidepressants can be taken with zelboraf?

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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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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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Lisa13's picture
Replies 11
Last reply 7/20/2012 - 1:03am

Next week, I'll be having my first craniotomy.  For those who've experienced them, how long does it make you feel better? 

Many impossible things have been accomplished for those who refuse to quit

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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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john partrick michael murphy's picture
Replies 10
Last reply 7/19/2012 - 10:24pm

I know I am just a piker compared to many of you, but it is a grand feeling to make it this far. I still have one tumor in my lungs, but it has shrunk 92% in a year and a half. Also I am now a proud member of the 500 plus minutes in the MRI cigar tube for all the brain scans. No new mets have been found since I started treatment at MGH in Boston. If we keep our hope, we will keep our strength.

The history of the world is the battle between superstition and intelligence.

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Nell's picture
Replies 6
Last reply 7/19/2012 - 6:33pm
Replies by: Nell, Ali, Anonymous

I have heard that local reoccurances at the primary site are common....but do they worsen the prognosis as far as metastasis to organs go? My Dr. did not change me from stage 3, but I am wondering if there may be more liklihood of further spreading because of these local reoccurances. Almost afraid to ask...don't want to borrow trouble, but thought someone out there might have experience ....

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

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