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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hannahcopeland1's picture
Replies 8
Last reply 4/19/2014 - 10:21am

Hello to anyone that is interested,

I am Starting a PD-1 trial on April 28th at Sarah Cannon in Nashville. It will be a much longer commute than I'm used to bc I am from Atlanta and have been basically able to walk to Emory to see my doctors for the past 2.5 years. A bit nervous about the stress that comes along with that . But eager to start the trial. I've got a pretty debilitating cough from the 2 tumors in my lung. I'm just hoping this version of PD-1 called AMP-514 works as well as Merck's. They have been doing the study at lower doses so far and I will be joining for the highest dose of the study, so I guess that's a good thing.

The only treatments I've done so far have been braf (first zel and then the mek/braf combo) until it stopped working last month. So This will be my first dive into immunotherapy treatment. And I'm nervous! I want it to work so badly! I'm getting married in August!

I guess I don't know what I'm posting about in terms of questions, other than if anyone has experienced this AMP-514. Maybe some encouraging words or advice for this 27 year old new commuting immunotherapy patient. I know many of you have a lot of experience and are very seasoned at dealing with these things. I'm trying to decide if I should try to hang onto my job throughout this trial etc

oh also, does anyone have advice for what to take along with codeine cough syrup so I can sleep? It does wonders for my cough, but keeps me up all night.


thanks for reading.

Hannah Copeland

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LibbyinVA's picture
Replies 2
Last reply 4/22/2014 - 3:46pm
Replies by: LibbyinVA, Anonymous

Does anyone have any recommendations for a dermatologist in the Chicago area? The patient is a young woman dx'ed with stage I melanoma. She needs follow-up checks. Should also mention she has very limited health insurance.

Thanks for any help you can provide!


I have melanoma but melanoma does not have me!

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Kate_perth's picture
Replies 15
Last reply 4/19/2014 - 4:22am
Replies by: Kate_perth, Lisa - Aust, washoegal, Anonymous, laura b

Just wanted to share this:-

When I was first diagnosed in 2012, I tested braf negative. It seems to be generally acknowledged that if you are braf negative, you always will be so you're not usually tested again. However, in 2013 I had a small metastases to my left breast and went to a breast specialist at a different hospital for surgery. As this was my first tumour with her (and very luckily for me), she tested me again for braf and the test came back braf positive. I am now responding very well to the braf/mek combo!

After speaking to a few research nurses, they have said that this seems to have happened to a number of their patients, though no one seems to know whether the tests are a little unreliable or the melanoma can mutate into braf positive with time.

My advice is ask to be tested regularly for braf... I can't even believe how lucky I was... If it wasn't for that small bit of luck, I would very likely not be alive - and now I have my best prognosis since diagnosis!

Take control, look after yourself and never ever give up hope!


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MixtaJones's picture
Replies 11
Last reply 4/17/2014 - 5:15pm


I am new to the world of melanoma and was only diagnosed with Melanoma 2 weeks ago. I just found out today I am most likely stage 4. I just met with a oncolgist today and will meet with radiation oncolgist tomorrow. Although I have full intention of giving this cancer hell and not giving in to it I am freaking out a bit. I feel the more research I do the less I feel I have a chance to survive. I had a ALND done and 24 nodes removed but they could not get them all. Everything I read says the drugs help people survive 10 months longer. That concerns me a ton.

I am hoping I can find some hope and guidence on this forum. I have tried reading some post but I have no clue what the lingo is. I feel like I am learning to text all over. what do "met" and "NED" mean? Are there any other terms I need to know?

Hope you all are winning your battles!

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Chellmarie10's picture
Replies 6
Last reply 4/16/2014 - 5:35pm

My husband Keith, 39 yrs old was just diagnosed.  No ulceration, 3.5mm thickness and we are seeing the oncologist today for the consult to do the sentinel lymph node biopsy.  Scared out of my mind.  We haven't even been married for 2 full years yet.  Any advice, help or even experience would be appreciated.  I come from a medical background so I know quite a bit already. I realize the thicker it is the more chance for metastasis. 

Any advice on what questions to ask the surgical oncologist today?




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Anonymous's picture
Replies 1
Last reply 4/15/2014 - 9:40pm
Replies by: Anonymous

Once again Mollom has shut me out.  Tried to post recent melanoma related articles from e-alert of Journal of Investigative Dermatology.  There were quite a few, so I put them all in one post.  But it didn't go thru.  Tired of this.  What good does it do to then report it to Mollom?  Nothing ever comes of it.

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Shaggy 's picture
Replies 9
Last reply 4/23/2014 - 12:59pm

Lets see how many of my old mates are still out there.Ive not been on here for about 2 years.SHAGGY...the Fireighter from England for thos of you that remember me.


Diagnosed with stage 3 MM in July 1995..nearly 19 years on facebook as well if you want to add me.Ian Mutch and my pic is me stood near my fire truck

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Anonymous's picture
Replies 5
Last reply 4/21/2014 - 11:14pm

I finished ipi last year and showed a major decrease in tumor size. Then in Feb...scan showed NED. In the meantime most of the side effects...itchiness, fatigue is gone...thyroid issue is still there. Would this mean that the drug has stopped working? I know it sounds silly but we all know the crazy thoughts that run through our head.

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

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tcell's picture
Replies 9
Last reply 4/18/2014 - 6:02pm
Replies by: BrianP, tcell, Mat, pigs_sty
Anonymous's picture
Replies 1
Last reply 4/16/2014 - 3:36pm
Replies by: BrianP

"Currently, there is no useful laboratory test to monitor patients with early stage breast cancer who are doing well, but could have an asymptomatic recurrence,"


same with melanoma, maybe someday there will be a blood test for it too

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Anonymous's picture
Replies 4
Last reply 4/17/2014 - 12:52pm
Replies by: Anonymous

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Replies by: Anonymous, Gene_S, Kim K

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 1
Last reply 4/16/2014 - 8:00pm
Replies by: Anonymous

I have been hearing bout how anti pd1 drug is meant to be so good for patients on terms of long term survival but is there anyone that is 5 to 10 years out?

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Thankful for this site. It was the first thing I came across when Googling. The positive stories and photos are making me feel ok.

I have just left the GP's office for my test results and am so confused. A mole I had removed under doctor's orders has come back malignant, and now I have to wait to see if it has spread.

I am quite shocked, and trying to keep a happy face for my children. Husband is at work.

She said I would be contacted within two weeks for an MRI and further testing.

If I post the microscopic description, I hope there is someone who will be able to give me some further info, good or bad. I work in the arts - have always failed science and it all makes no sense to me - apart from the word malignant. I know that's not good.

Also, how does everyone know what stage they are? I wasn't told. How can I find out?

Ok, here is the microscopic description:

Sections reveal a melanocytic lesion which has an assymetrical architecture and in areas a poorly circumscribed peripheral margin. A lentiginous growth pattern predominates with epithelioid melanocytes and focally there is early confluence of the junctional lentiginous melanocytic proliferation. Isolated foci of pagetoid change are seen and there are a few nests of melanocytes at the dermoepidural junction. In a perifollicular region there is mild fibrosis and pigmentary incontinence. A benign melanocytic naevus is seen on the deeper sections and this is clear of the margins. Focally there is fibrosis and chronic inflammation, consitent with regression.

Conclusion: Left clavicular area. Malignant melanoma in situ extends to .7mm from the closest peripheral margin.


Does that make sense to anyone??

If it's bad just tell me. Honestly I would prefer to know. At the moment I have to wait for up to two weeks to hear from someone who will be able to book an appointment for me. Ugh. Torturous right? And it's Good Friday tomorrow, so no chance of hearing anything soon I would imagine.

The thing that is freaking me out, is I have been feeling awful for about two years. The GPs kept putting it down to my vegetarianism, despite my iron levels being fine. Or a virus. Is this why?

I will stop rambling now. Sorry. I just walked in from the GP, put the television on to keep youngest child occupied and proceeded to Google. I'm not usually quite so verbose. Thank you if you got this far. I think I'm just shocked.

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The Independent ,


17 April 2014,
737 words,
© 2014. Independent Print Ltd. All Rights Reserved.

News | * Trials of revolutionary personalised drug treatments to begin this summer * Genetics-based approach will 'rewrite the rulebook', says head of Cancer Research UK ‘These treatment trials will rewrite the rulebook’

A "revolutionary" drugs super-trial aimed at discovering personalised treatments for the UK's biggest cancer killer is to get under way this summer, opening what experts have called a "new era" in the fight against the disease. Scientists will exploit a new understanding of the genetic properties of cancer tumours to help them identify drugs to be "targeted" at patients with specific variants of lung cancer, in an unprecedented partnership between researchers, the NHS and the pharmaceutical industry.

Scientists at Cancer Research UK, who have spearheaded the "genetic revolution" in cancer treatment, will be given access to the drugs libraries of the pharmaceutical giants AstraZeneca and Pfizer from July this year.

The trials, which will seek new treatments for patients at advanced stages of incurable lung cancer, are among the first of their kind in the world. Initially, they will test the effectiveness of 14 drugs against 21 genetic abnormalities identified in the tumours of several hundred people.

However, it is hoped that drugs which work against the different genetic varieties of every type of cancer may one day be discovered in this way. Professor Peter Johnson, chief clinician at Cancer Research UK, said the trials marked the beginning of "a very exciting time" in the fight against cancer. "We've been talking for a long while now about how the genetic revolution was going to impact cancer care and we’re really starting to bring these things together now.”

Over the past decade, new technologies have allowed scientists for the first time to perform detailed genetic analyses of cancer tumours, revealing the molecular changes that take place when healthy cells turn into cancer cells.

Scientists have identified a wide range of abnormalities, and cancers previously thought of as one condition have now been revealed to have particular genetic variants in different patients – opening up the potential for more targeted drug treatments, known as stratified medicines.

In the trials, small groups of patients will be identified who are likely to benefit from a certain drug. Up to 12 molecules developed by AstraZeneca will be included and two from Pfizer, but it is hoped that other pharmaceutical companies will open up their drugs libraries to cancer trials in the coming years.

Dr Harpal Kumar, Cancer Research UK’s chief executive, said the trials would “re-write the rulebook”.

“We’re talking about giving a number of options to patients who otherwise would have exhausted their treatment options,” he said. “[This] shifts the emphasis of designing a trial around a single drug to designing a trial that selects from a range of drugs, for a specific patient.”

Lung cancer is the biggest cancer killer in the UK for men and the second-biggest for women. There are 42,000 diagnoses and 35,000 deaths from the disease every year. Globally it kills 1.6 million people a year and while rates are declining in men, women have become more susceptible because of changes in patterns of smoking. Dr Kumar said survival rates for the disease had remained low, making it a good candidate for these first clinical applications of scientists’ new genetic understanding of cancer.

Menelas Pangalos, executive vice-president of innovative medicines and early development at AstraZeneca, said it was “not beyond the realms of possibility” that targeted cancer drugs could, within a decade, dramatically lengthen survival times for patients with certain types of tumour.

“One of the challenges we have is how to get these targeted molecules to the right patients in a cost-effective and time-effective way … [Over the next decade] we could start to offer patients a sequence of therapies that could prolong their life and make this more of a chronic illness, rather than an illness that is fatal within months,” he said.

Professor Johnson said analysing the “molecular landscape” of cancer patients’ tumours from the moment of diagnosis could become the norm, allowing doctors to prescribe treatments aimed at the specific genetic characteristics of their cancers.

Patients from 18 Cancer Research UK centres, attached to NHS hospitals, will take part in the initial trial, which has been hailed as “ground-breaking by the Health Secretary, Jeremy Hunt.

Independent Print Ltd.


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