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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BrianP's picture
Replies 1
Last reply 5/11/2013 - 12:17am
Replies by: JerryfromFauq

I never get tired of reading optomistic articles.  I love the sentence about one day melanoma being a chronic treatable disease.


NewsApril 30, 2013

Therapeutic Combos Make Inroads in Advanced Melanoma

IMNG Medical Media, 2013 Apr 30, B Jancin



WAILEA, HAWAII (IMNG) – “The past 2 years have been a really exciting time for those of us who have spent the last several decades” in the field of melanoma, said Dr. Allan C. Halpern, chief of the dermatology service at Memorial Sloan Kettering Cancer Center, New York.

“We are in a whole new place with a very promising future for turning stage IV melanoma into maybe a chronic disease for many patients, instead of a death sentence. For some patients, we’re already seeing what may be cures,” he said at the Hawaii Dermatology Seminar sponsored by the Global Academy for Medical Education/Skin Disease Education Foundation.

The greatest enthusiasm in the field now involves combining a pathway-targeted agent, such as vemurafenib, with an immunologic checkpoint blocker, such as ipilimumab. The vemurafenib knocks down 60%-70% of metastatic melanomas temporarily and the ipilimumab promotes durable responses.

But there’s a formidable economic obstacle to this approach: The strongest drug combinations often put big pharmaceutical companies in the uncomfortable position of having to cooperate with their competitors in expensive research projects. “A lot of the drug companies, to their credit, are finding ways to make it work,” Dr. Halpern said.

Dr. Halpern detailed the therapeutic history that has revolutionized the treatment of metastatic melanoma.

Prior to 2011 there were only two Food and Drug Administration–approved therapies for metastatic melanoma, dacarbazine and high-dose interleukin II. Both were unimpressive. The therapeutic dry spell has ended, he said. “There are for the first time in melanoma, instead of no hopeful drugs, a slew of hopeful drugs.”

Targeted therapeutic approaches, the result of laboratory insights into the molecular pathways to melanoma and the key genetic mutations involved, led to the development of vemurafenib, a selective, first-in-class BRAF inhibitor approved in 2011.

“Vemurafenib is an astounding drug. When you give it to a BRAF-mutated cell, it essentially turns off the cell’s metabolic activity.” When given to patients whose tumors test positive for the BRAF mutation, “it’s dramatically effective in 60%-70%.” But the response does not persist. “After about 6-18 months, the tumor develops resistance to the drug. It’s like somebody hit a switch to turn the tumor back on. The tumor comes roaring back, in the same places for the most part,” Dr. Halpern said.

As a result of this limited success, ongoing clinical trials are aimed at determining whether dual pathway blockade using combination therapy will provide more durable responses. Trials are underway with the oral BRAF inhibitor dabrafenib plus the oral MEK 1/2 pathway inhibitor trametinib. Other dual pathway combinations are also under study in melanoma.

The prospects are even more promising, according to Dr. Halpern, for immunologic checkpoint blockade, which is based upon the concept that some cancers progress because the immune system turns off prematurely and stops battling the malignancy. Ipilimumab is one such agent. An anti-CTLA-4 antibody, ipilimumab enhances T-cell activation and proliferation and has earned FDA approval as single-agent therapy in advanced melanoma.

Tumors often don’t begin to shrink until after 3-4 months, but the response is impressively durable in the roughly 30% of patients who respond to immunologic checkpoint blockade.

“These people look like they might be cured,” said Dr. Halpern.

Another important immunologic checkpoint molecule is PD-1. The anti-PD-1 agent known as MDX-1106 appears to be nearly as effective as ipilimumab, but with less toxicity. The early impression from ongoing clinical trials is that dual immunologic checkpoint blockade using anti-CTLA-4 therapy along with an anti-PD-1 drug provides synergistic anti-tumor activity.

Dr. Halpern reported serving as a consultant to Canfield Scientific, DermTech, SciBase, Quintiles, and Lucid.

SDEF and this news organization are owned by the same parent company. 

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Anonymous's picture
Replies 3
Last reply 5/13/2013 - 10:05am
Replies by: mellie, Anonymous, JerryfromFauq

To whoever may be open to this sort of thing: 


This will be my next step if excision doesn't take care of mine, or if it recurs....


I'm sure laws vary by state and country, so don't get yourselves into trouble trying to make it yourself, but do some research, I'm sure there are plenty of places that sell it pre-manufactured...


Worth a shot!

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KnowThyself's picture
Replies 9
Last reply 5/12/2013 - 4:22am
Replies by: Sandy11, KnowThyself, Anonymous, washoegal

Hello All,

I am new to this forum...well, ANY forum for that matter, and I am also new to Melanoma... REALLY new. Biopsy last month, re-excision last week...Another reexcision scheduled at the end of the month...Pathology folks sent my last excision on for a second opinion... But so far, have been told it is level II stage t1A (on the outer ear helix).....will have more detail when the second opinion comes back within a week... 

Not only have I read an overabundance of melanoma-related information in the last month, but I have become overwhelmed, almost consumed by it. I do realize I am at an extremely early stage, and I don't feel right to 'complain' in comparison to some of these stories I have read, but I feel compelled to at least 'vent' and gather more info, from real people (not just google) and opinions, stories, reassurance of sorts. Im past the point of worrying and having a downward spiral of emotion and morbid thoughts, now I'm at the point of 'how will you fix me?'...... And I understand at this kind of early stage, it is very fixable, but it has since opened the door to another realm of questioning.....

Could this other freckle be cancer? Is this little bump in my neck a swollen node? And all of the sudden, Ive developed crazy abdominal issues in the past month or two.... irregular vaginal bleeding, cramping, pain, gas, constipation, insane bloating (like my pants dont fit) occasional dizziness, extreme fatigue..... I have had suspected cancer cells removed from my cervix before (a common procedure, turned out to be nothing) but now it's like I wont be satisfied until I get some sort of full body scan to make sure I haven't missed anything else...

Everyone is very supportive, and telling me it will be fine, but even before I was diagnosed, I was told it was nothing. Even my doctor I initially went to said "it doesnt look like malnoma, which is good, you dont want that, it's pretty much incurable, a death sentence"....YES he said those EXACT words!!! I know this is not true, and maybe he was trying too hard to prove his confidence, but even from the beginning, i just kind of "KNEW" that it was.... And now, i just kind of 'KNOW' that this isn't the whole story.....



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vicuk's picture
Replies 4
Last reply 5/11/2013 - 12:37pm

Helen went for scan yesterday. Got results this morning! Everything stable except some tumours in her right lung which have completely disappeared. Going to celebrate this weekend. Thank God for GSK trial. 10 months so far no problems.

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michelleaudie's picture
Replies 2
Last reply 5/13/2013 - 8:09am

I had a operation May 2012 and the Dr was suppose to remove 3 moles, she forgot about two of them and only removed one - I never heard back from her about the histology results. In April 2013 removed the other two, and one of them Melanoma In Situ - I had a wide exision and now will go for screenings every three months.


However, after my diagnosis I requested the results from the mole removed in 2012 as I want to be on top of this diagnosis. When I got the report it said

"the lesion is present at the deep margin of resection and is histologically incomplete exised (? shave biopsy) Further clinical correlation is advised"


The Dr never phoned me to advise! So, in the past two weeks it growed back, and it was removed yesterday, so now the wait starts again for another histology report.................... Hopefully nothing will be wrong with it, but it is on such a personal spot on my body :(

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Location is just west of the beltway  a couple of blocks off  Rt 50.


From: "Marsha Komandt" <>
Sent: Thursday, May 9, 2013 7:35:19 PM
Subject: Upcoming Melanoma session May 30

For this month’s Quaarterly Melanoma Group session INOVA has three returning  guest speakers joining us for Melanoma Awareness Month.

Attached is the flyer for the Thursday, May 30 date from 6:30 – 8:00 pm.  For planning purposes of room assignment and refreshments, please do register on our website by the day before, Wednesday, the 29th.  Many thanks.


For those of you that may have a metastatic skin cancer or melanoma, there are two webinars sponsored by CancerCare in NYC, one tomorrow May 10 from 1:30 to 2:30 for metastatic skin cancer; the other Friday, June 14 for metastatic melanoma.  You may register by calling them at 1-800-813-HOPE (4673) or online at

You can also listen to previous workshops on their CancerCare website by logging on to  So if you miss one of the above, you can go into it at a later date.


Do hope to see many of you the end of this month.

Marsha J Komandt, RN, BSN, OCN

Oncology Education Coordinator

Life with Cancer, IHS

8411 Pennell St.

Fairfax, VA 22031


703-846-0924 (Fax)

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

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Gene_S's picture
Replies 5
Last reply 5/10/2013 - 8:37am
Replies by: Anonymous, Hstevens0072, Gene_S, benp

  On the next NaturalNews Talk Hour show this Sunday, you'll hear

Charlotte Gerson talk about how to eliminate cancer - naturally.
At 91 years young, Charlotte is simply amazing!  Show details below:
If you can't make the show or miss it - here's a little summary of the Gerson Therapy:

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

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mama1960's picture
Replies 2
Last reply 5/10/2013 - 6:10am
Replies by: POW, Harry in Fair Oaks

During CAT scans today to map out radiation the doctor mentioned that a lot of the bone been "eaten away". Will the bone regenerate?

It is what it is.

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aldakota22's picture
Replies 7
Last reply 5/13/2013 - 8:20pm
Replies by: awillett1991, aldakota22, buffcody, Anonymous, kylez, WayneG

Tomorrow marks 20 months I have been on "Z".I am extremely happy with that milestoneThere are still issues I face . Aprils Cat scans showed small  spotsin the brain .With subsuquent  MRI, melanoma is detected.Will have additional scans in late June to monitor  them.Praying that with Gods help and"Z" that all will be good. Keeping my PMA at high level.Like all here striving to change name to NED.All in all feel great and live normal.Just retired in Feb from 2nd career at USPS and I am now collecting  early Socilal Security.Physical side affects on "Z" have been more of a nusance than serious.Never thought at this stage of life that planning for the future would be based on access to major melanoma centers.So be it.Beat the Beast.  Al

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Linny's picture
Replies 1
Last reply 5/15/2013 - 11:43am
Replies by: BrianP

I've been trying to follow news on this vaccine because I'm in the trial for it. It seems like good news for the vaccine may be forthcoming soon. So let's keep our fingers crossed that the Phase III trial data is as pivotal as they hope it will be. If it is, it'll be great for those with Stage III resectable melanoma who are MAGE-A3 positive. If I remember correclty from the literature I got at the beginning of the trial, about 65% of melanomas test positive for MAGE-A3.

GlaxoSmithKline: MAGE-A3 (Phase III/NSCLC & Melanoma)

Success Could Open Up a New Platform; 40% Probability of Success with Global Sales Estimate of £1.2B in 2018

GlaxoSmithKline (GSK) could be a beneficiary in an emerging area which utilizes the understanding of cancer as an immune disease. GSK’s candidate is MAGE - A3, an antigen-specific cancer immunotherapy (ASCI), which has shown interesting phase II data. Pivotal phase III data in NSCLC and melanoma are expected in 2013. We see 5%-10% GSK NPV upside on positive data, and minimal downside on negative data given consensus expectations.

We expect pivotal phase III data for MAGE-A3 in mid-2013. This applies to MAGRIT (NSCLC) and DERMA (melanoma) studies, which are both event-driven. As the MAGE-A3 antigen is not expressed in normal cells in the body, the MAGE-A3 ASCI only targets cancer cells. The MAGE-A3 ASCI is highly specific for its antigen, and as a result the product has low potential to harm noncancerous tissues that lack the antigen. The minimal side-effects and good tolerability seen in the clinical trial program of MAGE-A3 (and other cancer immunotherapies) are particularly encouraging when compared to chemotherapy which often has toxic, poison-like side-effects (nausea, vomiting, hair loss, bone marrow depletion, etc.). MAGE-A3 therefore has potential not just as a product but also as a platform, as proving utility in adjuvant NSCLC or melanoma might open the road for GSK to treating perhaps dozens of cancer types with vaccines.

While we acknowledge that cancer vaccines are currently a high-risk area of development, reflected in our 40% modeled probability of success and £1.2bn 2018 global sales estimate, we see several reasons for optimism in the product: (1) phase II studies showed strong trends to MAGE-A3 improvements on survival (DFS, OS); (2) all MAGE-A3 trials so far show impressive safety; (3) phase III studies have much more power to show statistical benefits than the phase II studies; (4) GSK has used gene profiling information to potentially identify responders; and (5) GSK has used more powerful adjuvants (immune boosters) which produce higher-quality results in its phase III trials.

For now, the potential and the risks are high for MAGE-A3 (and the business division that could emerge at GSK if the product works). Consensus does not model MAGE-A3 generally, so we see little scope for downside.

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

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thrashter's picture
Replies 2
Last reply 5/9/2013 - 8:36pm
Replies by: Tina D, kylez

I received the great news of being N.E.D. after my last scan. This info came to me from my surgeon. I have an appointment with my oncologist on Tuesday to see if further bichemo is going to take place. I'm torn on weather to continue(4th) round or not. If i am currently N.E.D. should i submit my body to further toxicity? Also I thought i would be much happier about hearing those words but it seems maybe not to have sunk in. Any others hearing they are N.E.D. and still feeling like nothing changed?

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Anonymous's picture
Replies 1
Last reply 5/9/2013 - 5:45am
Replies by: Anonymous
lisab60's picture
Replies 28
Last reply 5/13/2013 - 8:28am

I had surgery 2 months ago to remove lymph nodes in my left groin and the primary tumor on my left foot. Right now I have "No Evidnce of Disease". My Dr. Gave me the option of interfuron for 1 year or bio/chemo for 4 months (1 week on and 3 weeks off). I chose bio/chemo. I start treatment on the 21st of may at MD Anderson. Has anyone had this treatment for "PREVENTITIVE" measures? I would like to know what to expect. I know everyone is different but just curious. Thanks.....Lisa

"Bring the Wood"

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lisab60's picture
Replies 0

I had surgery 2 months ago to remove lymph nodes in my left groin and the primary tumor on my left foot. Right now I have "No Evidnce of Disease". My Dr. Gave me the option of interfuron for 1 year or bio/chemo for 4 months (1 week on and 3 weeks off). I chose bio/chemo. I start treatment on the 21st of may at MD Anderson. Has anyone had this treatment for "PREVENTITIVE" measures? I would like to know what to expect. I know everyone is different but just curious. Thanks.....Lisa

"Bring the Wood"

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