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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Vemurafenib Extends Survival To 16 Months For Some Patients With Metastatic Melanoma

20 Mar 2012

An international team of researchers from the United States and Australia, including researchers at Moffitt Cancer Center in Tampa, Fla., have found that the oral BRAF inhibitor vemurafenib (PLX4032) when tested in a phase II clinical trial offered a high rate of response in patients with previously treated metastatic melanoma and who had the BRAF mutation. More than 50 percent of the patients in the trial had positive, prolonged responses and a median survival of almost 16 months.

The study was published in a recent issue of the New England Journal of Medicine.

According to study co-author Jeffrey S. Weber, M.D., Ph.D., director of the Donald A. Adam Comprehensive Melanoma Research Center at Moffitt, approximately 50 percent of melanomas harbor the activating (V600) mutation threonine protein kinase B-RAF. Unfortunately, treatment options for these patients are "limited."

The BRAF inhibitor vemurafenib had been found effective in phase I and phase III trials. However, to determine the overall response rate in previously treated stage IV melanoma patients, the researchers designed a multi-center, phase II trial with 132 patients with previously treated BRAF V600-mutant metastatic melanoma. The trial was designed by senior academic authors and representatives of the trial sponsor, Hoffman-La Roche, and was open to adults over the age of 18 with histologically proven stage IV melanoma, progressive disease, and at least one prior systemic treatment.

"Few patients with metastatic melanoma bearing the BRAF V600 mutation have a response to systemic chemotherapies," said Weber. "Additionally, most have a median survival of only six to 10 months. However, this study yielded an overall response rate of 56 percent and a median survival of nearly 16 months."

The 56 percent response rate for this study was higher than the response rates reported on studies with other therapies for a majority of patients, such as the monoclonal antibody impilimumab. Once more, the response for patients in the vemurafenib phase II trial was "rapid," said the study authors, with less than 15 percent of patients having had disease progression at their first evaluation.

"This trial showed that vemurafenib has clinically evident anti-tumor activity in metastatic melanoma, and that response rates are higher than those associated with previously used treatments," concluded Weber.

The authors reported that toxic effects were common, but not severe or life-threatening in most cases. They added that, as with most targeted therapies that block a driver oconogene, cancer cells can develop resistance with continued dosing and the molecular mechanisms of vemurafenib are "under investigation" at Moffitt by Keiran S. Smalley, Ph.D., and at other institutions to answer questions about resistance.

H. Lee Moffitt Cancer Center & Research Institute

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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Wilfred's picture
Replies 6
Last reply 4/24/2012 - 9:18pm
Replies by: Wilfred, gabsound, Linny

While spreading sunscreen (SPF 50) on my left bicep in February - in Jamaica at the Jamaica Inn where I thoroughly enjoyed myself - I notice a lump that had not been there before. I showed it to my wife and to my sister-in-law who is a nurse. They thought, as did I, that it was something to report to my doctor as soon as I got back to the US. WE got back to MD on Sunday evening, Dr D saw me at 3:00pm on Monday. The lump is about 1 inch in diameter and on the inside of my left arm. Dr D examined me and took a cell sample by aspiration. He gave me an order for a PET/CT and asked me to get it done ASAP. On Thursday of that week, 3/8/12, I had the PET/CT done at Capital Health Hopewell Hospital.The next day Dr D called to say the results were not good and that he wanted me to see Dr Scharfman at Hopkins.  I then went to Kentucky to spend a week as chaperone to some Portsmouth Abbey School students working on an Appalachia Service Project. Yesterday I picked up some CDs of the scan from the hospital to take with me to Dr Scharfman's on Thursday. A copy of the written report was in the envelope.

The report is 4 pages; good news can be reported in a sentence. There is a lot of terminology in the report that I do not understand. While reading it again last night,I used Google search to help me with various terms. For example: an SUV of 9.4 in my left bicep, intense uptake in the region of the pancreatic tail, focal abnormal uptake right hiliar region with suspected nodule of 7mm and an SUV of 15, intense focal uptakes within the left upper abdomen and mid abdomen, uptakes in my legs, lungs, colon. There are mentions of other uptakes in other places as well. The part that really bothers me is the in the Impression section: "Multiple focal areas of increased metabolic activity consistent with metastatic melanoma."

So...finally... I get to my point. What are the questions that I should ask Dr Scharfman on Thursday afternoon? This is the eighth time the M word has been used next to my name. I am positive and upbeat, worked my *** off down in Kentucky and told funny stories to the kids. My wife and children are very supportive and I am not afraid of the future. But I do want to understand what all this means before I meet with Dr Scharfman. Thanks, Wilfred

If you fight, you may lose, If you don’t fight, you will lose.

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AlisonC's picture
Replies 4
Last reply 3/21/2012 - 10:02pm

Hi everyone

My friend Dave - who posts here as DavidfromSingapore - is in the hospital and an MRI yesterday showed multiple new lesions. It looks like those of you who posted below about WBR were on the right track.

So any advice from here on ?  They are going to do the final 3 WBR treatments, cease temodar and return to zelboraf, although zelboraf doesn't seem to have held it in check.  The feeling is that there isn't time to start Ipi and have it take effect given the speed of progression.

your advice thoughts on any medications to (a) help fight the mel and (b) keep him comfortable ?  He is on dex but getting a lot of breakthrough headaches and pain which are preventing him (and his wife) from resting. Not wanting to throw in the towel treatment wise but being very realistic.  Any suggestions for possible avenues and advice on what has helped you/your loved ones at this stage ?

Many thanks in advance for any replies


Stage IIIB

NED since 2001

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JakeinNY's picture
Replies 13
Last reply 7/14/2014 - 9:02am

This study was published last year. Although none of the patients were melanoma patients, it doesn't seem to be a stretch that it may help mm patients.

I personally am already on a carb and sugar restricted diet and although this is such a small study, it is promising and is something worthwhile mentioning.

Do the best you can.

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deardad's picture
Replies 10
Last reply 3/24/2012 - 7:26am

To the international community on here you may not know Jim Stynes and he wasn't as far as I know I member on this board.

He fought this disease (stage 4) for nearly 3 years using his high profile as a Australian rules footballer to educate others. He passed away this morning, he was 45yrs old.

From what I understand he had numerous brain surgeries and in the end was on a antiPD1 trial here in Melbourne which was very new at the time - Nov 2011.

Another brave warrior lost.

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BrianP's picture
Replies 8
Last reply 4/2/2012 - 10:13am

I'm in my 4th month of interferon treatment.  All things considered it is going well.  I wanted to see what other patient's oncologist recommend for their scan schedule.  From what I've seen it seems like most recommend a brain MRI and petscan every three months for the first year.  I'm coming up on my 6 month scan and the oncologist is only recommending the petscan.  I'm insisting on the brain MRI as well.  Was curious what others are doing. 


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JakeinNY's picture
Replies 5
Last reply 3/19/2012 - 9:22pm

I haven't been on our site in several months but wanted to post that as of January 15, I am now 4 years, 3 months with clean PET/CT scans since the surgery to remove a malignancy in my parotid lymph node. I thank God and my doctors.

Do the best you can.

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ScienceDaily (Mar. 8, 2012) — Researchers say they may have discovered a new drug for the treatment of metastatic melanoma, one that uses the patient's own tumor cells to customize the therapy. The findings are published in the March issue of the journal Clinical Cancer Research.

The drug is sunitinib, which has already been approved by the FDA for the treatment of kidney cancer and gastrointestinal stromal cancer. In this Phase II clinical trial sunitinib proved effective against rare forms of melanoma that occur on parts of the body that the sun doesn't hit -- such as the mucosal surfaces of the mouth, the soles of the feet, and the palms of the hand.

"This form of skin cancer is particularly difficult to treat because it is resistant to chemotherapy, one of the standard therapies for most forms of cancer," says David Minor, MD, Director of Inpatient Oncology at California Pacific Medical Center -- part of the Sutter Health network -- and the co-author of the article. "Studies show that single-agent chemotherapy only produces a response rate of between 5 to 20 percent in patients with this form of cancer. So having one that produces a response of more than 50 percent is a big advance."

The forms of melanoma that were targeted in this study all have mutations in a gene called KIT, the tyrosine kinase receptor gene. The mutation makes an abnormal protein which then drives the growth of the tumor cell. Sunitinib works by turning off that protein and slowing down the cancer growth.

The researchers tested sunitinib in ten patients with advanced stage 4 metastatic melanoma who had the KIT mutation. Of those ten, four were able to complete the trial. Three of the four responded positively to the medication; one had a complete disappearance of her liver metastases for 15 months; the other two had remissions of seven months and one month.

"We need to be cautious because of the small number of patients involved in this trial," says Mohammed Kashani-Sabet, MD, a senior researcher at the CPMC Research Institute, Medical Director of CPMC's Center for Melanoma Research and Treatment, and the co-author of the study. "However, these results are encouraging because they are far better than we would expect to see with chemotherapy for this form of melanoma, and for this stage of the disease."

The researchers say that melanoma, like all cancers, is different in different people and that there are different gene mutations depending on the form. By identifying those who have the KIT mutation -- and sunitinib would not help a patient unless they had that mutation -- they are able to personalize the cancer therapy.

Because it has already been approved for the treatment of other cancers sunitinib has been well studied in larger patient populations. Side effects can include fatigue, low blood counts and a rash, but it is otherwise well tolerated by most people taking it.

The next step is to test the drug in a larger multi-center trial, possibly even involving patients at an earlier stage of the disease.

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

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JoshF's picture
Replies 1
Last reply 3/21/2012 - 7:58am
Replies by: FormerCaregiver

Had scan this past week. Just about a year into it and another clear scan. Also had genetic testing done BRAF was negative. Doc is going to continue to  treat as Stage 4 in regards to  follow up as with never finding a primary he would like to stay aggressive. Nearly a year later but I'm still confused. I'm blessed and thankful that I found this site and all the warriors on it. I'm sending positive energy out to all of you...keep on!!!



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

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QueenBZ's picture
Replies 5
Last reply 3/21/2012 - 6:42am

I hope I am not overstepping proper protocol but I had noticed KatyWI had not been active on the board for a while.  Sadly, she passed away Friday, March 16th.  I was in email contact with Katy on occasion being that we live in such close proximity.  She had completed the WI Ironman on September 11th with the proceeds going to MRF and her positive attitude about life just struck a cord with me. So hard to believe in just 6 months someone can go from the success of completing the grueling test of endurance of an Ironman to succumbing to this beast.  I have such a heavy heart and my prayers are with her family.

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Candi13's picture
Replies 23
Last reply 8/18/2014 - 10:47am


I am posting my good news to share information on the Merck PD-1 trial.

I started this trial on 12/20/11. After only 3 infusions, I could see 2 subq's on my leg and chest start shrinking.

Last week, I had my first 12 week scans since starting to take this drug. My doctor told me that there was NO CANCER
anywhere in my body.

Starting the trial, I had tumors in my leg, on my chest and BOTH lungs. Being stage 4, this is truly a miracle after
only taking this drug for 12 weeks. My doctor told me, I am a “complete responder”.

I know of 2 other patients who started this trial in December 2011 with me. One patient with lung mets is a complete
responder. The other patient is a partial responder.

For those interested in this trial, here is the link:

I know that there are openings for this trial at UCLA Medical Center with Dr. Ribas. His email

Good Luck to Everyone fighting Mel.


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I am a stage IV warrior and I can offer some bits I have learned. First I am so proud of this room and what it does for us.

I have been in a Phase II/I study with BRAF/MEK, with my stage IV metastatic Mel, for 15 months now. Tumors vanished except for a pea sized critter in my lung. Someday, somehow I want to fight my way to NED like so many of you.

When I had the two diseases above, both from melanoma, the thing that worked was Crisco (the white stuff in the can) to relieve the itch. The expensive prescriptions failed me. Just take a handful and rub it everywhere below the neck. It will soak in and give relief as it moisturizes the skin. Moreover it is durable for about 10 hours. If you wait about an hour before you go to bed, it won't even stain the sheets.

EN makes your legs look like a pair of tights loaded with door knobs. Then it turns to a multicolored bruise, and finally leaves. About a month for the whole cycle with me. It is our immune system getting ramped up again spoiling for a fight, and it came after me. My oncologist was surprised it hit me in the 13th month, instead of earlier, and the dermatologist was happy that my immune system was working so well. It goes after subcutaneous fat in the extremities and it made my lips look like I kissed a steam pipe. There is a lot of high excitement connected with fighting this disease.

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

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I hope this works for MEK inhibitors as well.  Looks like they are getting closer and closer.  Lets all pray that this the year. 

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Bob B.'s picture
Replies 25
Last reply 4/30/2012 - 1:31pm

Hi,  Will try to avoid sticking my foot in it- as I have with some previous posts under "Overtreatment?"....  First primary, a "lentigo maligna melanoma", was excised two years ago.  No recurrence- that I am aware of.     Second primary "superficial spreading malignant melanoma" I've been tracking 8 months, located 20 cm from the first primary, was excised three days ago.    Pathology received today is neither entirely innocuous nor very serious. Breslow, mitotic rate and Clark are all "ok" or better.

QUESTION:  What are "adequate margins", given the diagnosis/description below?  ("very close to the lateral margin...very narrow margins..narrowly excised")

DIAGNOSIS:  "Malignant Melanoma, 0.74mm Breslow's Depth, Clark's Level III.   The lesion has been completely excised, although it extends VERY CLOSE TO THE LATERAL MARGIN.

DESCRIPTION:  There is an asymmetric proliferation of atypical melanocytes arranged in nests and singly at the dermoepidermal junction as well as above it, with extension into the papillary dermis.  The lesion measures 0.74mm in depth and would be classified as Clark's level III, as the papillary dermis is filled and expanded.  There is pigment deposition throught the lesion.  There are less than one mitoses per millimeter squared.  There is brisk tumor infiltrating lymphocytic inflammation.  There is no evidence of ulceration or lymphovascular invasion in the sections examined.  The findings represnt superficial spreading malignant melanoma, which has been completely excised, albeit WITH VERY NARROW MARGINS.   One of the sections also shows small nodular masses of basal neoplastic cells with nuclear pleomorphism attached to the basal layer and surrounded by a loose fibrous stroma and mild inflammation in the superficial dermis, findings typical for a superficial type of basal cell carcinoma.  This has also been completely, BUT NARROWLY, EXCISED.  

Surgeon's recommendation:   Re excision, increasing margins by 1 cm each side.

I requested of pathology:  Quantified definition of "VERY CLOSE TO THE LATERAL MARGIN....NARROWLY EXCISED....VERY NARROW MARGINS".

Response to "Overtreatment?" post was overwhelming.  And enlightening, particularly from Janner, JerryfromFauq and Minnesota.  Many thanks!   I would much appreciate your opinions about "Margins?", in light of the pathology.   Thanks very much!  


The Only Good Legend is a Dead Legend.

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