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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Replies by: BrianP, kylez

A SIMPLE blood test could identify those patients whose melanoma - the most serious form of skin cancer - has started to spread to other parts of the body, according to new research.

The test allows scientists to examine DNA shed from cancer tumour cells into the bloodstream, in particular a gene called TFP12.

The gene usually helps stop healthy skin cells growing out of control, which can potentially lead to cancer.

But in melanoma patients this gene is switched off because of the presence of chemical "tags" known as DNA methylation.

Experts behind the test found that higher levels of DNA methylation suggested the cancer had spread around the body.

Early stage tumours had relatively low levels of DNA methylation, while advanced cancers (those that had spread) had much higher levels, suggesting the gene was more tightly shut down.

Measuring levels of methylated TFP12 in DNA in the blood could help doctors work out whether the disease has spread and what treatments may be needed.

Dr Tim Crook, study author and a consultant medical oncologist based at the University of Dundee, said: "Once melanoma starts to spread it becomes far more difficult to treat. But actually detecting whether or not it has started to spread is also challenging.

"By using a blood test, we have the basis of a simple and accurate way of discovering how advanced the disease is, as well as an early warning sign of whether it has started to spread....

"There's increasing evidence that the latest treatments are more effective in these early stages and, if we can identify patients whose cancer has only just started to spread, this would significantly improve the chances of beating the disease."

The same Dundee researchers have identified another potential biomarker - NT5E.

This gene appears to become methylated and switched off as melanoma first develops. But if NT5E becomes unmethylated again, the gene is reactivated and helps the disease to spread more aggressively.

The researchers suggest that NT5E could be a possible target for the development of new treatments to tackle melanoma, particularly for aggressive cancers that have spread to the brain, lungs and other organs.

Professor Charlotte Proby, a Cancer Research UK dermatologist based at the University of Dundee, said: "Using blood tests to assess the landscape of our DNA is a simple way to learn more about what's going on under the skin. The switching on and off of certain genes seems to affect when, where and why the melanoma spreads.

"Our goal is to develop a panel of similar biomarkers that will help us to accurately detect those patients needing extra treatment to fight their melanoma.

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

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Swanee's picture
Replies 32
Last reply 1/13/2014 - 11:28am

Please join me in an old fashion bell ringing for our friend Denise, who lost her battle with melanoma cancer on January 6th.  

I joined this site 4 years ago and experienced this bell ringing whenever a member whom everyone knew, lost their battle with melanoma.  I don't know where, when or who started it, and I would love to know.  For all who regularly read and post, I think it's a nice way to honor our Friend and send her to the heavens with our bells of solidarity and our quest to keep fighting and find a cure to melanoma cancer..

So in honor of our Friend, Denise Kirley, please ring your bell in honor of her memory.

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mark1101's picture
Replies 11
Last reply 1/16/2014 - 6:34pm
Replies by: Bubbles, mark1101, POW, Mat

Small met located on my right posterior iliac about 6 weeks ago brought me up to Stage 4 after participating in the ipilimumab trial earlier this year.  Will be determining next steps in a week or so after PET scan results are available.  My onc at Seidman indicates that if it is smaller or same as originally spotted, remove with radiotactical surgery.  If gone, wait and watch.  If larger or additional mets noted, systemic treatment is needed.  I just learned that I am BRAF positive and am wondering what systemic treatments this might open the door to.

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Good morning,

The FDA just approved the first-ever combination therapy for advanced melanoma! The combination involves a MEK inhibitor, trametinib, and a BRAF inhibitor, dabrafenib. Both drugs (developed by GSK) were approved by the FDA in May 2013 for use as single therapies. The MRF issued a statement on the approval, which you can read here.

Lauren - MRF


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Pink's picture
Replies 4
Last reply 1/9/2014 - 9:10pm
Replies by: Pink, Bubbles, UrsulaZ, POW

Went to Moffitt yesterday met the neuro and radiologist new MRI shows 4small lesions all on the right side.of my brain   I got fitted for the lovely plastic mask and start treatment on ties, we'd, Thursday and Friday. The following week start Ipi, here is hoping they all work. The trek of 1 45 min each way is tiring but I feel I am getting the best care there.

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Replies by: Mat, aldakota22

I am so proud to be in this trial, for three years now. We must remember those first brave ones, who died from BRAF alone, and the courageous Dr. Flaherty and his crew, and the FDA itself, which allowed MEK inhibitors to be given at the same time. They saved my life and so many others, and those to come. I am just overwhelmed with gratitude.

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

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Anonymous's picture
Replies 10
Last reply 1/10/2014 - 4:39pm

Hi Everyone,

Has anyone been able to work full time while on PD1? I have had one infusion so far (two weeks ago).  I was up all night Monday with chills and Tuesday I felt like I was recovering from the flu (flu hangover).  Just curious if I will be able to work full time with more infusions coming (hopefully 11 more).

Thanks.  Good luck to youi.


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Anonymous's picture
Replies 2
Last reply 1/9/2014 - 3:11pm
Replies by: Anonymous, Janner

Can anyone speak to the topic of "compassionate use", perhaps using ipi as an example?  In other words, how does it work?  How is announced?  Is there still exclusionary criteria?  Is it confined to certain trial sites?  I'm not looking for predictions on when compassionate use for PD-1 will be available--rather I'm looking for info on what compassionate use might look like if and when it becomes available.  Thanks.

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hdelancey23's picture
Replies 23
Last reply 1/13/2014 - 2:44pm

January 6 2014 at 5:22 am my mom was called home to be an angel. She fought long and hard even in her last days. And now she is finally at peace. I am mad at her doctor because he went to the hospital two weeks earlier because she had a lot of pain in her back. She knew something was wrong and the doctor only did an x ray and said there was nothing there. It was probably just a pulled muscle. Well when she was admitted to the hospital for the last time they did a more invasive ct scan which hey should have done in the first place and found there was a tumor growing into her spine and bone. Thats what was causing so much pain. Would it have made a difference to do radiation on that tumor? I don't know the cancer was taking over by that point. It was in all of her organs and everywhere. In her last days she still wanted to know; what's next? What do we do now. At that point there really was no more options. She decided she wanted to donate her boy to science so even after her death she is wanting to fight this horrible stupid cancer. I pray that they can find out as much as possible from her body and maybe find a cure from her.

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tschmith's picture
Replies 2
Last reply 1/20/2014 - 5:24pm
Replies by: tschmith, KRob

Has anyone had any positive results from Temodar? I am Stage IV.  I had a brain tumor (melanoma) removed in February of 2014.  There is a small nodule in my lung, right hip, and on the L2 vertebrae.  Most, but not all, of the tumor on the L2 was removed in October.  Two infusions of Yervoy resulted in Pituitary gland problems. The Pituitary has since recovered but my doctor does not want to continue with the Yervoy at this time. I am being treated at Johns Hopkins...we are also looking for clincal trials but something has to be done soon, which is why my doctor is considering Temodar.

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Lisa - Aust's picture
Replies 17
Last reply 1/10/2014 - 11:31pm

Hi Everyone,

Just wanted to share our good news and give others hope. My husband Craig started the Merck PD1 trial in Oct 2013 after prolonged success on the BRAF inhibitor trial. The one lymph node in his abdominal region flared up again, so he had to stop the BRAF trial. He had his first set of scans last week since starting the PD1 trial, and the results today were excellent. He had an 80% reduction in the size of his tumour. Although his tumour wasnt very big to begin with, the results are so encouraging, and it is such a relief that he is responding. This drug seems to be doing wonderful things, I hope everyone can have similar positive results.

We are a couple of relieved Aussies tonight.

Good luck to everyone fighting



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sFELDMAN's picture
Replies 5
Last reply 1/9/2014 - 10:15am
Replies by: Pink, Tina D, BrianP, Mat, SABKLYN

Hi everyone. I am in  immediate need and hope you can help me. I am in immediate need of a PD 1 trial. Does anybody know where any of them are being held I live in Florida but am willing to go and travel anywhere.    I have previously been on Braf/Mek  16 months did well,  then Yervoy....slowed it down but need pD1.   Thanks to all my fellow warriors for your help.  G-D bless


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Hi all, posting on behalf of my wife.

My wife was diagnosed barely in stage 3.  1.01mm on her leg, 6 cells found during biopsy.  She was not a good canidate for Interferon so we investigated and eventually ended up with the Dabrafenib and Trametinib on prescription.

She has been taking them for about 11 days.  She's had a few side effects, a rash, sickness but nothing extreme.

I am wondering if this is the worst it gets or is there a peak period for side effects or perhaps they just show up at any time.  Keep in mind this is all for a seemingly healthy person.


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Hi all, posting on behalf of my wife.

My wife was diagnosed barely in stage 3.  1.01mm on her leg, 6 cells found during biopsy.  She was not a good canidate for Interferon so we investigated and eventually ended up with the Dabrafenib and Trametinib on prescription.

She has been taking them for about 11 days.  She's had a few side effects, a rash, sickness but nothing extreme.

I am wondering if this is the worst it gets or is there a peak period for side effects or perhaps they just show up at any time.  Keep in mind this is all for a seemingly healthy person.


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bodrum's picture
Replies 19
Last reply 1/10/2014 - 11:18am

In september of 2013 I noticed a change in the color of a birthmark/mole. I sent a picture of it to an oncologist family member who told me that it was probably nothing since it was a birthmark. 

In December, I jokingly showed the color change to my dad who is an orthopedic surgeon... He immediately took me to the hospital and had the birthmark removed.

The surgeon who was removing the mole looked at it and said that it's probably nothing but will check it just to be sure.

Two weeks later the test results came back. They said that it was malignant melanoma. A few days later they did the wide excision and sentinal lymph node removal. One of the lymph nodes came back positive...

Two days later they did the pet scan which was clear.

At first I refused the full lymph node removal since I really don't understand why I should be living with lymphedema when I was just fine before all of this. But I will have the surgery this tuesday...

On new years eve my brother told me that I will probably die within 5 years. (he is an oncologist) He also told me to stop taking vitamins... ( I don't get why)

My dad says there were few cancer cells in the mole but that it had only spread to the lymph node only because the cancer cells were at the hair follicle. He also stated that the lymp node only had micro metastases. 

All these terms seem so foreign to me.  I look at statistics and they all mean nothing at this point. I don't understand what it all means. 

I am 33, I just started my own business this year. I was planning to get married and have kids within a year...  All that is gone now. 

It's time to make new plans... I just wished someone told me the truth about what is awaiting me...




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