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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Muru's picture
Replies 1
Last reply 9/30/2013 - 2:04pm
Replies by: POW

Dear All,

I am living out of India.
I am a melanoma Stage III patient with Unrectable tumor in my Neck. I have multiple Tumors in the Neck and LaryngoPharynx area. 
Please find attached the summary of the treatment.
Summary of the treatment
I had mucosal melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed in the first surgery . I was under constant observation. I was cancer free for 5.5 years. in Jan 2013 melanoma has recurred again in my larynx area. . Now my entire Voice Box has been removed on Feb 6th 2013 during the second surgery. ImmunoHistoChemistry for C-KIT had done and it had come as positive in my specimen. My Consutant said there is no need to do C-KIT mutation and we could take the C-KIT inhibitor Imatinib oral tablet. I took Imatinib tablets for about a month.
But still Melanoma has come back to me again in Right Side Level II and Level IV Lymphnodes within 3 months of my 2nd Surgery. I had undergone 3rd Surgery for the radical Neck Dissection of Lymphnodes in May 2013.I was under Interferon Injection for the last 3 months, Melanoma has recurred again in Laryngopharynx and Neck nodes. Surgeons have told that surgery is no more possible for my case. As per PET CT it has not spread to any other internal part of the body.  But still it means I am having high risk of getting into Stage IV. My braf mutation is negative. I need your advice on how Can I come out of this Melanoma successfully .
I am trying to see best option for my disease. IPI vs TIL Vs Biochemo.

My oncolgist recommends to take ipi for 6 months with 8 doses. But it is too costly to import to india. it costs about $200kUSD, which is too expensive.Do we have any way to participate in clinical trials where in the medicine cost couldbe free and hospital expenses + other expenses could be less than 200KUSD.Will they allow international patients without US Insurance.

How about the results of TIL trials with respect to IPI? Is it  better?

Also how do we compare biochemo resuts with IPI?

I need to take one strong decision based on your feedback.

Please share your views.







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Reuters News ,
Julie Steenhuysen and Ben Hirschler,
26 September 2013 01:29,
2135 words,
(c) 2013 Reuters Limited

CHICAGO/LONDON, Sept 26 (Reuters) - In 2006 when doctors started testing a melanoma treatment made by Roche Holding AG on patients, they were used to facing slim odds - about one in eight - that the tumors would shrink on chemotherapy. This time, they couldn't believe their eyes.

With Zelboraf, a drug that targets specific mutations in cancer cells, eight out of 10 patients in an early-stage trial experienced significant tumor shrinkage. Roche clearly had a remarkable drug, though it only worked for people with a specific genetic makeup.

Research like the Zelboraf tests, that fine-tune treatments to the genetic profile of patients, is fuelling a rethink over how new cancer drugs are tested. The promise: medicines that, in theory at least, can win approval more easily and cheaply.

That also raises ethical questions. If you know a certain treatment is genetically bound to work much better on some people than on others, is it right to conduct randomized trials to see which works best? Zelboraf led some doctors to question whether to go ahead with the trials they had planned, trials that would pit Zelboraf against the standard treatment, a chemotherapy developed in 1975 called dacarbazine.

Some doctors believed that would risk patients' lives unnecessarily. U.S. Food and Drug Administration cancer drug czar Dr. Richard Pazdur pushed for changes to shorten the trial. Others, such as Dr. Patrick Hwu of MD Anderson Cancer Center in Texas, refused to participate in a study that seemed bound to disadvantage some patients.

Ultimately, the trial proceeded and the drug won U.S. approval in 2011. But experts say the controversy over Zelboraf broke the mould, potentially pointing the way to lower-cost drug development.

At least one company has already indicated it will cut prices. Earlier this year, GlaxoSmithKline Plc won approval from the U.S. Food and Drug Administration for Tafinlar, a drug targeting the same mutant genes as Zelboraf, based on a single clinical trial of just 250 patients. It said the drug would cost $7,600 a month, 30 percent less than Zelboraf.

Whether others follow suit in cutting prices will depend on a host of issues, perhaps the biggest of which is the vast difference in the way the United States and Europe regulate drugs.

Pressure is mounting. A new and highly promising class of immunotherapy drugs - which some analysts see as a potential $35 billion a year market - may force companies' hands. These therapies will come to market just as more people are asking if health insurers and governments will keep paying sky-high prices.

Dr. Alexander Eggermont, chief executive of Institut Gustave-Roussy, France's largest cancer center, was one of those who held a hard line on Zelboraf testing, insisting on a randomized trial. But Eggermont now says the standard of proof has changed and he believes immunotherapies - which he calls the "biggest game changer we have ever seen" - will cement the new approach to testing.

"We won't have to do those dinosaur trials," he said. "It will change the whole attitude in drug development."


Randomized controlled trials - where some patients are given the treatment that is being tested and others get a "control" substance for comparison - became known as the gold standard of drug testing because they were the most effective way of seeing if a drug worked. But for patients whose cancers are driven by specific genetic mutations, some argue that randomized approach could become obsolete.

"The types of drugs that we're seeing now are different. They are just simply better in terms of efficacy," says Pazdur, the FDA expert who wanted to shorten the Zelboraf trial.

The new drugs are born out of a better understanding of the molecular changes that fuel cancer growth. For example, an estimated 50 to 60 percent of melanoma patients have a specific genetic mutation. Zelboraf and Tafinlar target these people. By testing such treatments only on people with a specific mutation, researchers can work out more quickly, and with fewer patients, if a treatment is effective.

Zelboraf represented a watershed in treating melanoma, a notoriously deadly cancer, although it is not a cure: Most patients eventually develop resistance to the drug. The Zelboraf trial fuelled support for a new "breakthrough therapy" regulatory pathway that was signed into U.S. law last year. It could shave years off the traditional drug approval process.

To qualify, a drug must show remarkable clinical activity in early stages of testing. The FDA's Pazdur, who has spent the past 14 years overseeing cancer drug approvals, calls them "knock-your-socks-off" treatments.

He says the FDA has already become more flexible in the kinds of evidence it will accept to speed new cancer drugs to patients.

For example, Stivarga is a pill from Bayer AG for some advanced gastrointestinal tumors. It was approved in February, just three years after the first patient with the condition received it in clinical tests. That's nearly twice as fast as Zelboraf. "That was like a land-speed record," says Dr. George Demetri of the Dana Farber Cancer Institute in Boston, who worked to develop the medicine.

The drug was reviewed under another FDA scheme called the priority review program, which provides an expedited six-month process.

The step-change in the pace of cancer drug development has helped drive a recent improvement in overall pharmaceutical industry productivity. New cancer medicines are the main driver of a pick-up in the number of products coming to market. Since the start of 2012, one third of the 54 drugs approved by the FDA across all diseases areas have been for cancer.


But despite the faster approval times, the impact on drug prices so far has been limited.

Clinical trials are the biggest single cost in drug company R&D, accounting for 36 percent of total research expenditure in 2012, according to Thomson Reuters CMR International. Drugmakers traditionally argue that it is only by ploughing an average of a $1 billion-plus into each new medicine that treatments can be improved.

"The costs should be coming down tremendously," said Paul Workman, head of drug discovery at Britain's Institute of Cancer Research. "What's disappointing is that we haven't seen it happen yet. We are in a fascinating but frustrating period of transition."

Don Light, a Harvard professor who is a long-time critic of the drugs industry, is more blunt. He says companies are deliberately clinging to the notion of huge research costs despite the advantages of smaller trials in cancer.

"Claimed high costs are like bragging rights - the higher companies say they are, the more they create the impression of heroism and financial suffering," Light says.

Still, not everyone in the industry is toeing the line. GSK Chief Executive Andrew Witty startled a number of his peers earlier this year by telling a British National Health Service conference that the $1 billion price tag was "one of the great myths of the industry." Since the figure includes the cost of failures, any drug company that can improve its success rate should be able to charge less for new medicines.

"For the first time in my career, pricing is becoming a really interesting piece of the dynamic," Witty said in an interview. "If you believe you have a sustainable model that can churn out more product than anybody else, why wouldn't you do this?"

That could be particularly important as drug companies begin to combine treatments in hopes of achieving longer-lasting benefits. GSK, for instance, has a second melanoma drug called Mekinist that it plans to combine with Tafinlar. Both are cheaper than existing drugs, though combined, of course, they will still cost many thousands of dollars a year.

Doctors are getting restive. In April, more than 100 leukemia specialists from around the world took the unusual step of complaining publicly in the American Society of Hematology's journal Blood that cancer drug prices were "too high, unsustainable, may compromise access of needy patients to highly effective therapy, and are harmful to the sustainability of our national healthcare systems."

With 11 of the 12 cancer drugs launched in the United States last year costing more than $100,000 a year per patient, according to the paper, the debate is not going away.


But faster trials in the United States won't always translate into cheaper drug development for companies that do business globally, in part because European authorities may not be willing to accept products based on the FDA's more flexible clinical trial standards.

Dr. Eric Rubin, head of oncology clinical development at Merck & Co Inc., said the FDA's willingness to allow accelerated approval based upon single-arm studies - without the traditional control group - is "a big step forward, but it's not universally agreed upon," especially in Europe.

Part of the issue is not with drug safety regulators but with government funding agencies, such as the National Institute for Health and Clinical Excellence, or NICE, Britain's health cost watchdog. It decides whether the state-run health system will pay for a new treatment or drug. It often knocks back expensive drugs as not cost-effective.

"In Europe, it's a different world because you can get a drug approved by the European regulatory agencies - but if the governments won't approve funding for it, people can't access it," Demetri said.

As a result, companies may be forced to into longer, larger trials just to satisfy cost regulators.


It's a problem that Merck and other companies developing new immunotherapy drugs will have to solve. The drugs, including Merck's lambrolizumab and Bristol-Myers' nivolumab, help the immune system fight cancer cells by disabling a protein called "programmed death 1" or PD-1 that acts as a brake on the body's ability to detect them.

Andrew Baum, an analyst at Citi, estimates treatments that coax the immune system to target cancer will become the backbone therapy for up to 60 percent of cancers over the next decade, generating $35 billion in annual sales.

Dr. Antoni Ribas at the University of California, Los Angeles says the immunotherapies are showing so much promise that they, like Zelboraf, raise doubts over whether randomized trials are needed. He believes they could be approved in the United States on the basis of a single-arm trial. Yet Merck has started enrolling patients in a study where patients will be randomized to get the new treatment or existing chemotherapy.

One patient who has already put himself forward for lambrolizumab is Stew Scannell, 65, head of operations at global defense company Northrop Grumman in Oklahoma City. Scannell, who served a couple of tours in Vietnam and spent several years in various deserts testing helicopters, figures his melanoma may be the result of cumulative sun damage.

When his doctors were talking about buying him another couple of months, he decided to do his own research. He started lambrolizumab shortly after his first meeting with Ribas, in April 2012.

Several of his tumors have disappeared. At his last scan in April, there was no sign of any tumor in his brain. In Merck's trial, the most common side effects of the drug include fatigue, fevers, skin rash, loss of skin color and muscle weakness. But so far, Scannell has had none. "I really haven't missed a step. I've continued working. The radiation was difficult. But the marvelous thing about the immunotherapy is no side effects. No lethargy. No loss of appetite. No anything."

South African melanoma patient Christina Chrysostomou, 45, would be more than happy to see the end of randomized trials when a treatment has shown early promise.

After her cancer got worse on Bristol-Myers' immunotherapy Yervoy, she and her husband and 8-year-old son headed for the United States in the hopes of trying one of the new anti-PD-1 drugs.

But when she arrived in late June, Merck's Phase I trial had closed, and she was told she would have to take her chances in a randomized test. Luckily for her, a spot opened up in a non-randomized Phase I study and she is now getting lambrolizumab - but she feels for others less fortunate.

"It's really hard knowing there is something out there that could possibly help and having to go through a gamble and maybe not even get that," she said.

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Cindy VT's picture
Replies 1
Last reply 9/30/2013 - 11:36am
Replies by: sharon0803

I am stage IIIB, NED since 2010.  First ocurrence in 1984, second occurence in 2005.  Still here, still waiting for it to come back.  I know bad attitude.  I'm just tired.  Stroke in 2012, heart attack in 2012 and 2013. 

My cousin died at 58 from Melanoma, well maybe pericarditis, not sure.  Haven't spoken with that side of the family for a long time.  Then a cousin decides to contact us and tells us how her sister died of melanoma.  She had the disease for 30 years.  I'm 29  years, and I'm 56.   She did smoke, and she started to get a different kind of cough, not the normal smokers hack.  So she went to the doctor and found mets in her lung.  According to my cousin, she went into the hosptial and never came out.  She said her heart filled with fluid as well as her lungs.  She was also overweight, not the normal skinny wasting away cancer victim.

My father had multiple myeloma and he was 6'4" and weighed about 130 pounds when he died.  Dad did not die of the disease he died of a heart attack.  The doctor said he would have probably lasted another 6 months.  Yeah of pain.  Thank God for the heart attack. 

I have pericarditis, its getting worse.  I was on a med called colchicine its a very tough med to be on. So I decided it was not worth the pain to be on this med.  I am overweight, and not from eating.  So I guess I'm thinking I'm on the road to pass on but when?  I am just stunned by my family member's story of how my cousin died of this disease.  I thought I was doing pretty good.  I'm not really worried about dying, I hate the suffering and the pain. 

I needed to vent.  Sorry.


Cindy VT

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Replies by: Janner

I was recently diagnosed with Melanoma In Situ on my lower right leg, pretty much my ankle.  The mole (tumor?) is the size of a pencil eraser, maybe a bit smaller.  Some was already removed when the biopsy was done.  This Friday I am having surgery, a wide excision and skin graft, to remove the tumor.  I am wondering what kind of recovery I am looking at.  Such as, will it be hard to walk, painful, etc.  Also, I am NOT having a SLNB done..should that be done?  I was told since it is a very early stage that the chances it spread is very slim.   I am not freaking out as much anymore, but when I was first told I had tested positive for Melanoma I was very scared.  Should I be scared this has spread to my lympnodes?  Should I push for a SLNB?  Also, if you could tell me anything you know about what kind of recovery I am looking at.  Thanks so much. 

Jenn G.

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Miles against Melanoma walk November 2nd in Lewisville Texas join in with spreadin awarness and hope..

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Roxy1453's picture
Replies 2
Last reply 10/1/2013 - 3:26am
Replies by: JerryfromFauq, JoshF

I'm sorry I haven't gotten back with the results of my talk about my biopsy results. It was in the middle of the website changing and I was having trouble getting on.

My Dr was sure this spot in my lung was Mel. He pulled up my tests and was comparing them to the previous ones. I have had a spot behind my knee that couldn't be removed. It has shown that it was decreasing in size for quite awhile. But now he was seeing that it is now showing less intense, which it had not done before.

He thinks that maybe the 2 doses of IPI I have had have taught my immune system to recognize the Mel and fight it! He thinks I'm now fighting this beast on my own!! Now I read, yesterday, about exactly this happening with people who have had IPI.

I go back for another CT scan Oct 11 and if the spot in my lung has grown, he's taking it out to find out what it is and this whole story is out the window.

I am so excited but yet not 100% sure I can trust any of this!!

"I can do all things through Christ who strengthens me." Philippians 4:13

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Anonymous's picture
Replies 10
Last reply 12/16/2013 - 7:06pm
Replies by: natasha, Anonymous, smurph226, Ktmay, Janner, casagrayson

Hi, i had a mole removed from my thigh and have been told it was stage 1a melanoma and only 0.2mm. I realise as things go I'm very lucky. I am due to have a WLE in a weeks time and I'm ok with that. What I am worried about is my future. As a sun worshipped, I realise that has to stop but will I still be ok in the sun covered up with sun block. I've only told a few people about this and they seem to think my mole is gone so that's it all sorted. I don't feel like that and I'm quiet emotional and not sleeping very well. I understand I'm low risk but do statistics mean no re occurrence? I'm sorry to share my worries with you when a lot of you are in a worse place than me.

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Charlie S's picture
Replies 4
Last reply 9/30/2013 - 7:07pm
Replies by: MarieM, Eileen L, Janner, mike_nj

There just aren't enough words to express my sadness about the death of Dian.

Here is her obituary in the Spokane newspaper


Here is a link  to her band "Dead Fiddlers Society".  Dian was a marvelous musician.

Also see some pictures of Dian and Bob at the 2006 MPIP Bash in Dallas

Lastly a video of Dian doing what she loved.........making beautiful music in beautiful surroundings

You shall be missed Dian, you shall be missed.


Charlie S

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Rocco's picture
Replies 1
Last reply 9/29/2013 - 4:09pm
Replies by: MaryD

I experienced side effects of the eye while on Ipi trial (10MG/KG compassionate use) way back in 2009, and just this year was diagnosed with thryoid issue, Graves Disease and very early Glaucoma.  Wondering if anyone who had the same strength dose of Ipi while on trial have experienced eye issues since stopping?

- Just Curious


Luke 1:37

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cindersma2's picture
Replies 3
Last reply 9/30/2013 - 8:43pm

hi, i just got back node results clear...yay no more surgeries right now.  because my spot was over 2 they want me to be put on interferon for a year or dr.slingluffs clinical trials(shots). i was wondering if i could get some real opinions on pros and cons of both.

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terihenry's picture
Replies 2
Last reply 9/30/2013 - 11:38am
Replies by: SteveH230, BrianP

My husband was diagnosed with Stage 4 Metastic Melanoma (in ther liver).  He was BRAF negative but had 4 Yervoy treatments with no negative reactions - slowed the disease.  DTIC was not good and had no benefit.  We'd hoped to get him on PD1 so applied/accepted for a clinical trial - but we're randomized into the chemo arm (not DTIC as he's already been treated with that) but am still looking for PD1 opportunities fo rhim (or anything else that can treat the cancer successfully and/or buy us some time.  I'd heard the there were PD1 options in paliative care.  Does anyone have any info on that?

Thank you.

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Anonymous's picture
Replies 1
Last reply 9/30/2013 - 11:15am
Replies by: Sherron

Miles Against Melanoma North TexasLewsiville, Texas · Non-Profit Organization · 364 like this


Sign up and Register for the walk it takes a village to raise awareness and raise funds to  raise awareness,-hope and new treatment available.


Melanoma Fighter you can find all info on facebook or active.

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JoshF's picture
Replies 8
Last reply 10/3/2013 - 10:59pm

HI All-

So my surgical oncologist from Northwestern Memorial Hosp called me this morning with results of CT Scan on chest that was ordered due to hyper metabolic activity in mid lobe of right lung found on PET scan. He cancelled surgery as wants a biopsy of nodule in lung which measured 9mm. He said he would be remiss to do surgery as I would immeadiately start some type of systemic treatment if biopsy comes back positive for mel. I got impression that's what he is thinking. He said you could have some type of infection which made PET light up and so on. That being said I've had numerous CT Scans which show nothing with the latest being from March. So in 6 months something grew to 9mm in my lung. I did smoke for 20+ years but I'm a realist. I'd put money on this being MM and gladly lose it if biopsy comes back neg.

SO my confusion here is I always thought surgery was best way to treat melanoma then followed with treatment. Something I'm missing? Maybe I should stop trying to understand this awful disease... Thanks for listening and to the many that have replied...I feel like this is best place to go for information and advice...



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

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