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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alabama girl's picture
Replies 8
Last reply 2/22/2012 - 8:24pm

I was diagnosed with stage 3 melanoma in Nov after my wle and snb surgery. It was in 2 lymph nodes and was 9mm deep on my side. They wanted me to have radiation on my side since it was so deep, but none on the lymph nodes. They want me have a CT scan and labwork every 3 months but now the radiologist wants me to have an ultrasound  on my lymph nodes also every 3 months. What i have read does not mention ultrasound at all? Isn't the ct scan enough? She says it may catch something the CT misses. Has anyone else had ultrasounds? Why do some people with stage 3 have chemo and some not? Just confused and hoping someone has some answers.


alabama girl

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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kwb's picture
Replies 8
Last reply 2/26/2012 - 4:25pm

I'm new to this bulletin board.  Just found out this morning that I have two (2) more melanomas according to recent biopsies.  Fortunately, both spots are in situ.  However, these latest spots are numbers five and six for me.  Skin doctor and oncologist are befuddled as to what is going on.  PET/CT scans and radiology (lymph nodes) have all come back negative - again, a good thing.

My last major surgery was this past November (2011), which I am still recovering from.  Obviously, I'm concerned about the rapid reoccurrence of these cancerous locations.

Just wanted to share my concern.  Any thoughts would be greatly appreciated.



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My Mother is Braf negative as well as C-kit negative. She has mucosal melanoma. She just started a reinduction of Yervoy and has her second treatment tomorrow. We are seeing a melanoma specialist in Miami, FL - Dr. Jose Lutsky. My Mom is going on 3 years with this melanoma. Here is a little about her history.


History:  69 yrs old - Primary vulva melanoma braf negative, c-kit negative and negative for ny-eso-1

Yervoy first round stable for 9 month. Recent recurance and moved to spleen.

10/17/2011 large FDG avid  mass gastric antrum 34x36 mm suv=8.6, FDG localization nodule lateral left mid lung pleural based 12mm suv=8.6, at least 4 left lung nodules only the largest of which is fdg avid

1/16/2012  gastric antrum 46x45mm suv=10.5, lateral apect spleen isodense 31mm suv=6.4 w/multiple persispnin hilar nodes 28mm suv=9.6 and 11mm suv=5.1, active pleural base nodule lateral left lung lingula 25mm suv=17.3, adjacent satellite 10mm suv=3.1, large left upper quadrant mass 44x34mm suv=14.0 brain mri - clear

Being that she is beaf and c-kit negative would she be negative for HLA2 or NARS mutations? She I push to have her tested? I need help with a plan B and C. Other then melanoma she is in good shape. Should we look into TIL for her? Take her to Moffitt or Sloan. Any advise would be greatly appreciated.

Thank you!


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Leigh's picture
Replies 4
Last reply 2/28/2012 - 5:43pm

Hi all,

I am following your journey's and thinking of you all, praying for a cure for this disease. 

I wonder if I could canvas opinions and experiences with attempting to lose weight for health reasons when you have a hx of melanoma (Stage 1a).  The "Curves" weight management programme (along with others) advises 6 meals involving protein per day, including quite a lot of eggs, cottage cheese and protein shakes to try to manage doing this. 


I have read afew nutrition books related to cancer, and have switched to organic.  I haven't added any vitamins as I am pretty confused by it all to be honest (some say you shouldn't have multivitamins because they are linked to cancer...I have no idea what to believe and dont have time to research it all with two wee children).  In any case, I know too much red meat and ???maybe protein????is a bad thing. 


Would love to hear those in the knows opinion of this.  Thank you for your time if you have got this far!

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James from Sydney's picture
Replies 2
Last reply 2/20/2012 - 10:33pm
Replies by: Mike N, jim Breitfeller

For those of you down under we are organising our inaugural Melanoma walk on March 25 to raise funds for The Melanoma Institute of Australia. They intend to map the entire Melanoma Genome from the largest tissue bank in the world, held at the Institute, they hope to identify all possible Mutations. is the site to register to walk and if you like set up a fundraising page. Melanoma is now the most common Cancer in Australia in the 15 to 44 year age group.

best wishes 


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Feb. 20, 2012 06:00 UTC

Plexxikon Announces European Approval of Zelboraf® for the Treatment of Patients With BRAF Mutation-Positive Metastatic Melanoma

BERKELEY, Calif.--(BUSINESS WIRE)-- Plexxikon Inc., a member of Daiichi Sankyo Group, today announced that the European Commission has approved Zelboraf® (vemurafenib) for the monotherapy treatment of adult patients with BRAFV600 mutation-positive unresectable or metastatic melanoma. The cobas 4800 BRAF V600 Mutation Test, a companion diagnostic used to identify patients with the BRAF mutation, is CE marked and commercially available in Europe. Zelboraf is designed to selectively inhibit the BRAF mutation that occurs in about half of all cases of melanoma.

Zelboraf and its companion diagnostic have already been approved in the United States, Switzerland, Israel, Brazil, New Zealand and Canada. In the United States, Zelboraf is being co-promoted by Daiichi Sankyo, Inc. and Genentech, a member of the Roche Group. Roche promotes Zelboraf outside of the United States.

“The approval of Zelboraf by the European Commission marks a significant advancement for European patients with metastatic melanoma who historically have had very limited treatment options,” said K. Peter Hirth, Ph.D., chief executive officer of Plexxikon. “We are very pleased that our strategy to co-develop Zelboraf along with a companion diagnostic helped accelerate the availability of this personalized medicine for these patients.”


BRIM3, a global, randomized, open-label, controlled, multicenter, Phase 3 study, compared Zelboraf to dacarbazine (chemotherapy), in 675 patients with previously untreated BRAFV600E mutation-positive, unresectable (inoperable) or metastatic melanoma. The endpoints for BRIM3 were overall survival (OS) and investigator-assessed progression-free survival (PFS). Other endpoints included confirmed investigator-assessed overall response rate.

In January 2011, the data safety monitoring board for BRIM3 recommended termination of the BRIM3 study due to compelling efficacy data, and further recommended that study patients receiving chemotherapy have the option to cross over to the vemurafenib treatment arm.

  • The pre-specified interim analysis of BRIM3 showed the risk of death was reduced by 63 percent for patients who received Zelboraf compared to those who received standard first-line treatment (hazard ratio [HR]=0.37, p<0.0001).
  • In a post-hoc analysis of BRIM3 data with a longer follow up compared to previous analyses, including cross-over of patients from the chemotherapy treatment arm to the Zelboraf treatment arm, Zelboraf significantly improved survival by providing a median overall survival of 13.2 months compared to 9.6 months for those who received chemotherapy. Historically, patients with metastatic melanoma have had a median survival of six to 10 months. This analysis showed the risk of death was reduced by 38 percent for patients who received Zelboraf compared to those who received chemotherapy (hazard ratio [HR]=0.62, p<0.0001).
  • At 12 months, 55% of patients who received Zelboraf were alive, as compared to 43% of patients who received chemotherapy.

In the single arm BRIM2 study of previously treated patients, Zelboraf treatment also showed a survival benefit compared to historical control data. These data are expected to publish shortly.

Marketing authorization submissions for Zelboraf are currently under review by health authorities in Australia, India, Mexico and other countries worldwide.

Important Safety Information about Zelboraf (vemurafenib)

This information does not take the place of the patient talking to his or her doctor about their medical condition or their treatment with Zelboraf.

Zelboraf is a prescription medicine used to treat a type of skin cancer called melanoma that has spread to other parts of the body or cannot be removed by surgery, and has a certain type of abnormal “BRAF” gene.

Zelboraf may cause a type of skin cancer called cutaneous squamous cell carcinoma (cuSCC), that usually does not spread to other parts of the body. Patients should check their skin and tell their doctor about skin changes including a new wart, a skin sore or reddish bump that bleeds or does not heal, or a mole that changes size or color.

While taking Zelboraf, patients should avoid going out in the sun. When patients go outside, they should wear clothes that protect their skin, including head, face, hands, arms and legs. They should use lip balm and a broad-spectrum UVA/UVB sunscreen with SPF 30 or higher.

Possible serious side effects of Zelboraf include severe allergic reactions; severe skin reactions; changes in the electrical activity of the heart called QT prolongation, which can potentially be life-threatening; abnormal liver function tests; eye problems; or new melanoma lesions.

Common side effects of Zelboraf include joint pain, rash, hair loss, tiredness, sunburn or sun sensitivity, nausea, itching or warts.

These are not all of the possible side effects of Zelboraf. Patients must tell their doctor if they have any side effect that bothers them or does not go away. For more information about side effects, patients should ask their doctor or pharmacist.

Patients should call their doctor for medical advice about any side effects. Patients or their caregivers are encouraged to report negative side effects of prescription drugs to the FDA at 1-800-FDA-1088 or at They may also report side effects to Genentech at 1-888-835-2555.

Patients should read the Zelboraf full Prescribing Information and Medication Guide for additional important safety information at

About Zelboraf (vemurafenib)

Vemurafenib is a novel, oral small molecule, which was approved by the FDA in August 2011 and is being marketed in the U.S. as Zelboraf for the treatment of patients with BRAFV600E mutation-positive inoperable or metastatic melanoma as detected by an FDA-approved test. Zelboraf also has been approved by the European Commission, and in Switzerland, Israel, Brazil, New Zealand and Canada. Zelboraf is not recommended for use in melanoma patients who lack the BRAFV600 mutation. Plexxikon utilized its structure-guided chemistry platform to discover vemurafenib, and initiated clinical development in 2006. Shortly thereafter, Plexxikon and Roche signed a collaboration agreement to co-develop vemurafenib.

The cobas 4800 BRAF V600 Mutation Test, a DNA-based companion diagnostic used to identify patients whose tumors carry the BRAF mutation, was simultaneously approved in the U.S., and is CE marked and commercially available in Europe. Roche Molecular Diagnostics developed the cobas 4800 BRAF V600 Mutation Test following a 2005 agreement with Plexxikon.

Studies of vemurafenib in combination with other approved and investigational medicines as well as in other tumor types are being conducted. More information about ongoing vemurafenib studies is available at (in the U.S.) or or on the Roche Clinical Trials Registry at (in the EU). Genentech can also be contacted by calling the company’s clinical trial call center at 1-888-662-6728 or emailing

About Melanoma and BRAF mutation

Melanoma is the most serious type of skin cancer and is growing at a rate of about five to six percent annually. More than 75,000 people in the U.S. and 160,000 people worldwide are diagnosed with melanoma each year. It is one of the deadliest cancers, with a five-year survival rate of 15 to 20 percent for people with advanced (Stage IV) melanoma, according to the American Cancer Society.

Risk factors for melanoma include a positive family history of melanoma, prior melanoma, multiple clinically atypical moles or dysplastic nevi, inherited genetic mutations, fair skin and sun exposure. However, melanoma can occur in any ethnic group and also in areas of the body without substantial exposure to the sun.

The BRAF gene is a key component of a pathway involved in normal cell growth and survival. BRAF mutations may lead to uncontrolled cell growth, and are thought to occur in about half of all cases of melanoma and eight percent of all solid tumors.

About Plexxikon

Plexxikon, a member of Daiichi Sankyo Group, is a leader in the structure-guided discovery and development of novel small molecule pharmaceuticals to treat human disease. The company’s lead drug Zelboraf (vemurafenib/PLX4032) was approved by the FDA in August 2011, and is being co-promoted in the U.S. by Daiichi Sankyo Inc. and Genentech. The company is developing a portfolio of clinical and preclinical stage compounds to address significant unmet medical needs in oncology, as well as in several other therapeutic indications. Plexxikon’s Scaffold-Based Drug DiscoveryTM platform integrates multiple state-of-the-art technologies, including structural screening as a key component that provides a significant competitive advantage over other drug discovery approaches.



Plexxikon Inc.
Kathleen Sereda Glaub, +1-510-647-4009
For Plexxikon
Susan Kinkead, +1-415-751-3611
Jennifer Cook Williams, +1-360-668-3701


Source: Plexxikon Inc.


View this news release online at:

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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himynameiskevin's picture
Replies 12
Last reply 2/20/2012 - 3:29pm

Well the most recent CT scan show the tumors in my lungs are still progressing since my last scan on Jan 9th. Some at faster, more alarming rates, and some not so much. Not the news I was hoping for, but, it is what it is, just another little speed bump. I’m in a tricky spot right now. On one hand, as unlikely as it seems, I guess the Yervoy could essentially still kick in any minute, it's been 2 months since my final dose. On the other hand, things are getting worse, and waiting for something that’s unlikely and may not happen may not be in my best interest. Some would say wait it out, some would say move on, and they are.

As suggested by both of my oncologists, before finalizing a decision to wait it out or go with zelboraf, I spent the last 3 days getting every bit of attainable information (disks, written reports, lab notes) of all recent treatments and medical history together and contacted my most recent doctor and team at the National Institute of Health with a brief update of what has been going on, in hopes that maybe they’ll have a trial or an idea we could both benefit from. Maybe they could hit me with the ACT again, as intense as it was, I would love another shot. Or maybe they've got something new to try, something I'd seem like a good candidate for. She agreed to look them over, discuss any options with the team and get back to me. Personally the thought of going back there, just makes my heart warm. At this exact time last year, I was on the mend because of their help, I remember the feeling, and the thought of possibly feeling like that again is... well it makes me smile, a true smile of unabashed happiness and hope. I know the chances of them accepting me for something aren't that great, but with all my history there, and a bit of much needed luck, maybe they will. We'll see. I fed-exed everything yesterday at the fastest rate possible, and hope to hear from them early this week. As always, this waiting in uncertainty is the hardest part, but I’ll be ok.

On a lighter note, I still feel fine, no pain, trouble breathing, nothing too abnormal from what I can tell. Of course there's some anxiety and nervousness, but during times like these I'm sure it's a pretty normal human reaction and will pass as soon as a plan is in course. 

Hopefully I'll have a plan and something beneficial to look forward to in the coming days. Until then, thank you all for the ongoing support and help though these stressful times. It means so much.

I'll talk to you soon.

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sharon0803's picture
Replies 13
Last reply 4/18/2012 - 6:42pm


Hello All,


I am new to the forum, I have however, been lurking.  I wanted to introduce myself and my current diagnosis.


My name is Sharon and I am from Illinois, I have recently been diagnosed with Stage 3B.  I have had the WLE and the RGD.  I saw the Oncologist last week to go over follow up treatment.  He did want me to go into a clinical trial.  The trial would pit an FDA approved drug for Stage 4 (IPPY) against the Interferon.  A machine would pick which drug I did….  I did not want to do the interferon, but would be willing to take my chances in the clinical trial.  After researching clinical trials and my insurance, I found it would be an expensive option (insurance will not pay anything) without any say so in the drug.  Therefore, I have not opted not to go in.


I was hoping to hear from others with Stage 3B and some of their follow up treatments,  I am especially interested in Brain scans… my Doctor has not told me of any recommended scans that would take place IF I opted not to go into a clinical trial.     


Looking forward to reading other’s post.

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yoopergirl's picture
Replies 16
Last reply 2/21/2012 - 8:46pm

I will be having my third infusion tomorrow and the past 2 days I have had the chills so bad, so am thinking is this due to the Yervoy or did I pick up a bug? Last night about 2 am I shook so bad from the chills that I woke up and took some tylenol and then about 4 am was sweeting so bad had to throw the blankets off, now has anyone had this?? I do have the itching I kinda hope this is just a bug. I will have my labs done before I see the doctor so I assume if it is anything that I should worry about it will show up then. Thanks again, this board has given me so many answers and questions that I have written down for the doctor.    yoopergirl

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SStamps's picture
Replies 1
Last reply 2/20/2012 - 11:12pm
Replies by: Ali

Had scans done last week brain, lung, spine and leptomeningeal show improvement , but tumor on rib has grown so the Dr wants to start Braf he also said he may reintroduce the ipi. We have use special pharmacy the insurance company works with to get the Braf so we are waiting.   Mickey has been unable to drive since starting the IL2 treatment for the spinal fluid so he spoke with Dr about this the Dr ordered a EEG and Mickey still can't drive. He is bummed about the news but accepting.  His short term memory is off some, a word comes out wrong some and he can't drive because they are afraid he could have a seizure, but besides that he is doing good.  It has almost been a year since the pathology confirmed Stage 4 melanoma.  I feel very bless to have this time with my husband :)


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natasha's picture
Replies 18
Last reply 2/22/2012 - 9:12am

How big is chance for 2mm Breslow unulcerated Clark 2 melanoma to spread to Lymph nodes?...How it was in your situations? I am going to do  SNB and scared to death..:( Thanks again and again for all you support and information yougiven me.

I am keeping you in my prays.

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Maxximom's picture
Replies 20
Last reply 10/14/2013 - 12:44am

I just found out that I am BRAF negative..I am very upset. I started IPPI on Monday. I need to have a Plan B in case the Ippi fails. I am one of those people that just seeem to take the one day at a time approach to life.. even though I know that I should. What options are out there for me..clinical trials..or are there treatments.. I doubt that I would be able to withstand the IL2 treatment..for many reasons.Any advise would be appreciated.


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Angela C's picture
Replies 3
Last reply 7/28/2012 - 4:18pm
Replies by: tammy4102, LynnLuc


I have a tumor behind my pancreas and we are discussing having it removed via surgery, along with the tumor in my adrenal gland. I heard from my oncologist today and after his discussion with the surgeon, they believe that a whipple procedure would be needed. They would have to remove part of the head of the pancreas to be able to reach the tumor. So, part of the pancreas would be removed, there is a possibility of some of the stomach having to be removed as well. They also have to take part of the duodenum and then change the path that the pancreatic juices take.

I don't have a complete undersanding of the procedure just yet, but the doctor said it's a major procedure with some possible long term side effects, like a change in eating habits if they have to take part of the stomach. It also sounds like there is a higher level of risk than any other surgery I've had in the past and a higher risk of not making it through this surgery. Part of the reason for this is that these lymph nodes (tumor) are right next to a major blood supply and the adrenal tumor is also right next to the vena cava. So, there is a fair amount of risk with this surgery.

It all sounds very scary. I have a consult at NIH next Thursday to talk about getting into the TIL trial. So, if that is the case, this surgery would be done there. I would imagine they are very talented doctors and probably some of the best that I could have performing a surgery like this. I've done IL-2, MDX-1106 and Yervoy. So, I think TIL is about the only treatment option besides surgery available for me.

Just wondered if any of you have had a whipple procedure?



Be kind, for everyone is fighting a great battle. -Plato

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  Just wanted to pay my respects in the one forum where we can really share the pain.From all I have read and heard about Gary was that he was a very warm and honest man besides being one hell of a ball player.RIP   Gary Carter .

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Abachert's picture
Replies 6
Last reply 2/21/2012 - 8:01am

So I'm not truly a single mom, but my husband works with a collegiate football team which means during the season I basically am because he's at work for 14-17 hours a day and with the new coach, his hours have stayed like this even when they are not in season. We have a 2 year old daughter and I work full time as a sales manager for a hotel. Im stage 3A and we are debating if interferon is what is best for me and the family. I wanted to hear from single parents or families with young children on why you chose to undergo treatment and how it affected family life. Also, for those that are done with treatments, how long did side effects last after you finished and have there been any other issues that have come from doing the interferon? Thanks for the help! I want to be healthy but if they got all the cancer through surgery, is the interferon worth it?

Life is an occasion, rise to it!

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