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: catmandu

I have had a level 4 desmoplastic melanoma on my face, a superficial spreading in situ melanoma on my leg and now a nodular melanoma on my back.  Wondering why I continue to be surprised when I see that 'look' from a doctor.  

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GAngel's picture
Replies 14
Last reply 10/6/2013 - 6:12am

Hello all! I am so happy to share the good news regarding the results of my husband's most recent PET/CT scan which revealed that the multiple (15+) hepatic lesions were not well seen and his left lymph node is significantly decreased in size! You may recall, two months ago, Rudy switched from Zelboraf (which was still working and had reduced tumors in liver from 15+ to 4) to the Dabrafenib/Mekinist combo in hopes of less side effects and an overall better result.  He has been feeling so much better since he started treatment with combo and now with confirmation that it is working we are certain that it was a good choice to switch treatment. Next step, when needed, will be a PD1 trial. His oncologist states these trials begin at the Chao Family Comprehensive Cancer Center, University of California - Irvine, in the spring of 2014. 

I continue to pray for all on this board for strength, peace of mind, and for the comfort of Christ.  Never forget that you are loved!

Gina

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Judy D's picture
Replies 8
Last reply 11/7/2013 - 3:00pm

Anyone not on any treatment plan having been diagnosed stage IV? The reason I'm asking is because I'm stage IV with NED for the last 6 months. I was on Zelboraff but my Dr took me off because of the extreme photosensitive issues I was having. I am going to begin new drug soon but wondering if we will ever be free of treatment
I am so thankful and blessed to be in the situation I'm in now. I just believe we can never give up

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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DeniseK's picture
Replies 19
Last reply 10/8/2013 - 10:19am
Replies by: Janner, Anonymous, POW, smurph226, DeniseK, JoshF

Hey Everyone, 

I need help for my cousin.  She is not a blood cousin but she was just diagnosed with Melanoma today.  She had a biopsy of a mole behind her knee on the back side of her leg removed and it came back as melanoma.  I guess it was a  punch biopsy but she said it wasn't very deep and the derm said they caught it early.  She is asking me what questions to ask and I don't know.  It's been so long for me since my initial diagnosis I wouldn't know how to read a path report or know what to ask anymore.  I do know she will have to have a WLE but do they do a SNLB too automatically?  I told her to ask her derm to refer her to a melanoma specialist not just an oncologist.  The derm is talking to the melanoma surgeon and is getting back with her in the morning.  I am very concerned for her and she is scared to death.  She lost her daughter Amber at age 24 in 2001 to melanoma.  I told her about this website so maybe she will come for support and help with her questions.  I'm trying to find out what the depth was.  

Any help as far as what she should be doing is appreciated.  

Thanks everyone for your help

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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NYKaren's picture
Replies 13
Last reply 10/18/2013 - 10:35am

I went for a brain MRI this morning. Neurologist say everything is shrinking and that no new mets have formed. Still not allowed to drive--I didn't know that in NY, anyone who's has a seizure cannot drive for six months. Two down, four to go.
I'm still on 2mg. of Dextramethasone, next week one, then finally finished.
I'm cleared to go back to work tomorrow.

I've been on Trafilnar for six weeks now. Tomorrow I'm starting two weeks off, one month on, etc. quite frankly, being that I have practically no side effects, this is definitely scaring me. Still on Keppra, also for six months.

So, all in all good day, I really hope it stays that way.
Karen

Don't Stop Believing

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Eileen L's picture
Replies 5
Last reply 10/2/2013 - 2:50am

Hi to all. Haven't been on this board in many months, but for some reason have been thinking about the incredible support I have received from people here over my six year journey.

I am a six year, Stage IV survivor currently on the Roche BRAF/MEK Phase Ib trial. Have been on the trial for about 15 months now with a great response. Have no FDG activity on PET and the one problematic tumor, which is on my right adrenal gland, went from 6 cm to 1.8cm. It is still hanging in there, hasn't changed in size over the course of multiple scans. I have never had the pleasure of NED status since my Stage IV status and have grown accepting of living with tumor in my body if it is well controlled with treatment.

Over the past six months  have seen side effects of the therapy diminish greatly after the common battles with joint pains, mouth sores, drug rashes, fatigue, etc. Lingering side effects include hypersensitiviy to the sun, which I am managing fairly well. I even have a head to toe sun protective outfit to go to the beach in if I desire to do so. Quite fetching! Also have bouts of fatique and occasional joint pains. Mangeable given that I no longer work and have lots of flexibility in my schedule.

That's about it. Glad to have this community available and thankful to all of you who are dedicated "posters!"

Eileen L

Stage IV survivor

 

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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.

Thanks,

Muru

  

 

 

 

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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."

BETTER SCIENCE

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.

PRICING BACKLASH

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.

UNITED STATES VS. EUROPE

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.

"POSITIVE RESULTS"

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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