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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This article came across my feed and sounded interesting so I looked for the trial.  Melanoma is one of the cancers they are accepting for the trial.  Doesn't say brain mets are a disqualifier and they think it will work on brain mets.  Phase I so you're definitely a "rattie" if you choose this trial but if I was a non-responder to Ipi or PD-1 I'd definitely consider it.  Looks like it's only in Chicago right now.


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yazziemac's picture
Replies 2
Last reply 2/27/2015 - 10:36am
Replies by: arthurjedi007, Gene_S

Hi everyone

We found out 2 days ago that Pete's melanoma has spread again.  As I posted previously, he had a brain met in November, followed by a craniotomy and gamma knife radiation in Nov/Dec 2014.  He had a PET scan in mid February which showed mets in liver, spine, and muscle.  He's going to start Yervoy on March 11.  We are in Canada and the drug protocols here require that he have one dose of Dacarbazine before he qualifiies for the Yervoy, and must fail the Yervoy before being able to start Opdivo (Nivo).  He had the Dacarbazine yesterday.  I am hoping that he doesn't have serious side effects from the Yervoy and that he responds, but our oncologist said there is only a 25% response rate to Yervoy, which isn't great.   I read the forum postings every day and learn so much from everyone here.



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lanasri's picture
Replies 2
Last reply 2/27/2015 - 8:49am
Replies by: lanasri, Becky

My son's wife and a couple of good friends have created a website with his extraordinary landscape photographs to honor his memory by donating all net proceeds to the Melanoma Research Foundation.  

Jeffrey and I visited this forum often and always came away with an abundance of knowledge and support.  The amount of compassion in this forum is truly a gift and one that Jeffrey had supported through the sale of his images.  Here is the link to his website, which really tells Jeff's story.  Clicking on each photograph will provide poignant memories evoked by the image, along with a link to purchase.  

Please pass the link along to everyone you know!  As we are all painfully aware, there is nowhere near enough money going toward Melanoma research.   This is our way of contributing.

Thank you for your support!

Stay strong!


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ashlee12's picture
Replies 3
Last reply 2/27/2015 - 3:17am
Replies by: dmk252003, Anonymous, evleye

Ao cause I've had melanoma am I more likely  to get another type of cancer such as breast or lung?

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AshleyS's picture
Replies 5
Last reply 2/26/2015 - 5:06pm
Replies by: casagrayson, Anonymous, jbronicki, BrianP

I'm starting a trial at MD next week. My husband and I are bringing my 2 year old and  3 month old with us to Texas. We have family in Dallas and considered staying there and driving on the days I need to be in Houston. Some have said this will be too much. Any thoughts? I'm going to call my social worker today, but I thought maybe someone on here would have advice. :)

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TOKYO -- Anyone who has suffered through a lingering cold has firsthand experience that viruses are resilient, annoying pathogens. But our opinion of viruses might improve a great deal if they could be trained to fight cancer.

Researchers at Tottori University and the University of Tokyo's Institute of Medical Science are doing just that. So far, the results are promising. They have confirmed the safety and effectiveness of genetically engineered smallpox and measles viruses in attacking cancerous tumors in animal trials. The bugs are altered to keep them from infecting healthy cells, then injected into the bloodstream to do their work.

Researchers at both institutions believe the method could lead to new cancer therapies to supplement surgery, chemotherapy and radiation. But first, they must confirm the effectiveness and safety of the new method in humans.

Cancerous tumors grow by creating blood vessels that feed them. When a therapeutic virus is injected into the bloodstream, it circulates through the body until it reaches the tumor. It then infects the cancer cells. The virus kills the cancer cells as it spreads through the tumor, causing it to shrink or disappear. The viruses can also be used to stimulate the immune system to attack the cancer cells.

Targeting cancer

A research team led by Takafumi Nakamura, an associate professor at Tottori University, has come up with a way to target malignant cells in lung and pancreatic cancers using the vaccinia virus, which is used in smallpox vaccines. The team genetically altered the virus so that it multiplies in cancer cells but is harmless to healthy ones.

The researchers injected human pancreatic cancer cells into the abdomens of mice, causing tumors to grow in them, then injected the mice with the virus. They found that more than 90% of the cancer cells had died. "The virus was originally used in vaccinations, so it is very safe," Nakamura said. His team hopes to confirm the safety of the virus in animals closer to humans, including monkeys, and start clinical trials in five years.

Professor Chieko Kai and her team at the University of Tokyo's Institute of Medical Science have developed a method that uses a measles virus to treat breast cancer. The researchers found that the virus infects breast cancer cells by sticking to a protein, PVRL4, on the surface of the cell. As with the Tottori University trial, they genetically altered the virus so that it multiplies only in breast cancer cells.

When the virus was injected into mice implanted with cancerous tissue, the cancer grew little and most cells in the tumors died. When the virus was administered to healthy monkeys and dogs, it had no apparent side effects or safety problems. "The likelihood of the virus infecting noncancerous cells is low," Kai said. She wants to start clinical trials as early as 2016.

Treatment without trauma

Viral therapies are likely to be easier on patients than surgery and chemotherapy. And as the virus moves through the bloodstream, it can attack small malignancies that escape the surgeon's knife, as well as metastatic cancers.

This approach, while promising, is not without drawbacks. The patient's own immune system may kill the viruses before they reach their target. The more they are used, the stronger the body's immune response is likely to be. Devising effective treatments therefore means coming up with bugs that can evade the body's natural defenses.

There are also concerns therapeutic viruses may mutate in the body and attack healthy cells. The safety and efficacy of injected viruses have so far been confirmed only in animal experiments. And the long-term effects of these viruses on humans have yet to be studied. Researchers will have to find ways of dealing with potential side effects.

Tomoki Todo, a professor at the Institute of Medical Science and a leader in the field, started a clinical trial in late December for a brain tumor treatment that uses a genetically modified herpes virus. So far, there have been few side effects and therapeutic effects have been confirmed, Todo said.

Viral therapies offer new ways of fighting disease, but work remains before viral weapons can be deployed in the battle against cancer.


Nikkei Digital Media Inc.

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Chemotherapy and radiation failed to thwart Erika Hurwitz's rare cancer of white blood cells. So her doctors offered her another option, a drug for melanoma. The result was astonishing.

Within four weeks, a red rash covering her body, so painful she had required a narcotic patch and the painkiller OxyContin, had vanished. Her cancer was undetectable.

''It has been a miracle drug,'' said Mrs. Hurwitz, 78, of Westchester County.

She is part of a new national effort to try to treat cancer based not on what organ it started in, but on what mutations drive its growth.

Cancers often tend to be fueled by changes in genes, or mutations, that make cells grow and spread to other parts of the body. There are now an increasing number of drugs that block mutations in cancer genes and can halt a tumor's growth.

While such an approach has worked in a few isolated cases, those cases cannot reveal whether other patients with the same mutation would have a similar experience.

Now, medical facilities like Memorial Sloan Kettering Cancer Center in New York, where Mrs. Hurwitz is a patient, are starting coordinated efforts to find answers. And this spring, a federally funded national program will start to screen tumors in thousands of patients to see which might be attacked by any of at least a dozen new drugs. Those whose tumors have mutations that can be attacked will be given the drugs.

The studies of this new method, called basket studies because they lump together different kinds of cancer, are revolutionary, much smaller than the usual studies, and without control groups of patients who for comparison's sake receive standard treatment.

Researchers and drug companies asked the Food and Drug Administration for its opinion, realizing that if the F.D.A. did not accept the studies, no drugs would ever be approved on the basis of them. But the F.D.A. said it sanctioned them and could approve drugs with basket study data alone.

Instead of insisting on traditional studies, said Dr. Richard Pazdur, who directs the F.D.A. office that approves new cancer drugs, the agency will look at the data and ask, ''Is the American population going to be better off with this drug than without it?''

These are the sorts of studies many seriously ill patients have been craving -- a guarantee that if they enter a study they will get a promising new drug. And the studies move fast; it does not take years to see a big effect if there is one at all.

In Mrs. Hurwitz's case, the mutation in her rare cancer is in a gene, BRAF, found in about 50 percent of melanomas but rare in other cancers. She is among dozens of patients with the same mutation, but different cancers, in the new study that gives everyone the melanoma drug that attacks the mutation.

Basket studies became possible only recently, when gene sequencing became so good and its price so low that doctors could routinely look for 50, 60 or more known cancer-causing mutations in tumors. At the same time, more and more drugs were being developed to attack those mutations. So even if, as often happens, only a small percentage of patients with a particular tumor type have a particular mutation, it was possible to find a few dozen patients or more for a clinical trial by grouping everyone with that mutation together.

In a way, this is a leading edge of precision medicine that aims to target the drug to the patient. Unlike previous efforts that looked for small differences between a new treatment and an older one, with basket studies, researchers are gambling on finding huge effects.

''This is really a new breed of study,'' said Dr. David Hyman, a cancer specialist at Memorial Sloan Kettering who directs the study Mrs. Hurwitz is in and two similar ones.

And they are seeing some unprecedented responses, along with some failures. The responses, though, can be so striking that control groups might be unwarranted or infeasible, Dr. Pazdur said.

''Conventional therapy might give a response rate of 10 or 20 percent,'' Dr. Pazdur said. ''The newer drug has a response rate of 50 or 60 percent. Does it make sense to do a randomized trial?'' And even if a trial were planned, he said: ''Who would go on that trial? Would you go on that trial?''

''When you are having a big effect, it is kind of jaw dropping,'' Dr. Pazdur added. ''These are response rates we haven't seen before in diseases.''

But these are still the early days, researchers caution. ''It is a different world we are walking into,'' said Dr. Daniel Costa, a lung cancer researcher at Beth Israel Deaconess Medical Center in Boston. ''And we are learning as we go along.''

The new studies pose new problems. With no control groups, the effect has to be enormous and unmistakable to show it is not occurring by chance. When everyone gets a drug, it can be hard to know if a side effect is from the drug, a cancer or another disease. And gene mutations can be so rare that patients for a basket study are difficult to find.

The rarity of the mutations, in fact, is one reason for the new national effort, supported by the National Cancer Institute. Its study, called Match, is essentially a basket of basket studies. Doctors around the country will be sending tumor samples from at least 3,000 patients to central labs that will examine them for mutations. Those with any of a dozen or so mutations in their tumors can enroll in studies of drugs that target their tumor's mutation.

Dr. Keith Flaherty of Massachusetts General Hospital, principal investigator for the Match trial, said the number of baskets was uncertain -- it would depend on the number of drugs. But he expects 12 to 15 baskets to start, expanding to perhaps 40 or more. There will be 31 patients per drug.

He anticipates mixed results. ''We are exploring an unknown space here,'' Dr. Flaherty said. ''But it is essentially impossible for this whole set of baskets to fail.''

To show what is possible, Dr. José Baselga of Memorial Sloan Kettering points to preliminary results he presented in December for the basket study that includes Mrs. Hurwitz.

Among 70 patients, there are eight types of cancer. Eighteen patients had one of two very rare cancers, Erdheim-Chester disease or Langerhans disease, the cancer that struck Mrs. Hurwitz. Of them, 14 responded to the melanoma drug -- their tumors vanished, shrank or stopped growing -- and the remaining four have not been taking the drug long enough to say.

''Unbelievable,'' Dr. Baselga said.

''This is working in a way that is clear, that is unprecedented,'' he said. ''I don't have enough patients to do a Phase 3 study,'' he added, referring to the large, randomized study traditionally used to test new drugs, ''and I even question the morality of it.''

But others in basket studies have not fared so well.

Eleni Vavas entered a basket study at Memorial Sloan Kettering hoping to stop the stomach cancer that was killing her. The study, said her husband, John Vavas, ''was our last-ditch, Hail Mary effort.'' His wife, who was 36, entered it last spring, the only patient with stomach cancer. But, Mr. Vavas said, ''she just didn't respond.''

She died on July 1.

Erika Hurwitz's cancer of white blood cells is now undetectable, after she entered a trial that uses drugs that block mutations. (PHOTOGRAPH BY GREGG VIGLIOTTI FOR THE NEW YORK TIMES) (A19) 

The New York Times Company

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Anonymous's picture
Replies 2
Last reply 2/25/2015 - 8:05pm
Replies by: Anonymous, Janner

I am reading many different experiences of those with early stage melanomas who thought they had the all clear but yet, the melanoma had spread internally.

Standard protocol for early melanoma does not consist of any type of body scan and insurance doesn't cover it.  Not everyone has the luxury of affording it.

What is a patient to do? Each case is different, some patients do get a clean bill of health but others don't.

Should I be concerned?

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Rocco's picture
Replies 1
Last reply 2/25/2015 - 7:50pm
Replies by: Janner

Your stories helped me through some rough early years after diagnosis.....just wondering if you were still around.


Luke 1:37

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Randy437's picture
Replies 4
Last reply 2/25/2015 - 7:29pm

I am stage IV, but have been NED for five years after surgeries to remove mets from both lungs, brain and small intestine.  Currently I get a CT with and without contrast every 4 months and a brain MRI with and without every contrast every six months.  Does anyone similarily situated have a different scan schedule?  I'm somewhat concerned about the cumulative radiation from the CT scans.

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Anonymous's picture
Replies 3
Last reply 2/25/2015 - 6:48pm
Replies by: Anonymous, Tim--MRF, joelcairo

Can anyone tell me anything about Avastin?  My father's oncologist suggested he be part of a study combining Yervoy with Avastin.  He has stage 4 melanoma.  I've read a lot about Yervoy but nothing on Avastin.  Thank you.

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Anonymous's picture
Replies 11
Last reply 2/25/2015 - 5:45pm
Replies by: Kacey79, ldub, Janner, _Paul_, Anonymous

I had a biopsy done last week on a mole on my front scalp, right behind my hairline.  This is my 3rd melanoma diagnosis within the past year.  One was on my left upper arm (.30 breslow depth), the second was on my right forearm (in situ), and the third is on my scalp.  I feel sick to my stomach right now but I'm trying so hard not to worry.

I was actually at Moffitt in Tampa two weeks prior to have total body photography of all my spots.  I'm anxious as to what else on my body is melanoma.  

What should I expect with the WLE on my scalp?  I just know it's tighter skin up in this area.  I appreciate your advice and/or encouragement.

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Anonymous's picture
Replies 1
Last reply 2/25/2015 - 5:23pm
Replies by: Julie in SoCal

Thinking about you. How did you appointment go with the "Rock Star" doctor?

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ldub's picture
Replies 8
Last reply 2/25/2015 - 2:34pm
Replies by: ldub, Charlie S, Mom2Addy, Janner

Hi - I had two moles taken off last week.  Unfortunately, one of the moles was MIS.  What's bothering me is that my dermatologist (very experienced - 40+ years, academician, metropolitan area) said that he was not impressed with the mole on my calf that I pointed out and that we could just wait and watch (it was about 5 mm).  The mole bothered me as an ugly duckling and stood out from the others on my leg, so I told him I would just like to get rid of it as I might obsess on it.  Imagine my surprise when it came back positive as early MIS. My doctor has reassured me that I am very lucky that we got it at such an early stage (and I completely agree) and that I do not have to worry.  Of course I am freaking out now.  Now he also mentions that he thought it was dysplastic (which he never told me when I was there). 

Because my doctor did not think the mole was any big deal before the path came back,  I am now questioning everything - my path results (even though they were sent out to a separate dermatopathologist whose CV seems OK), the correct staging (hoping overread and not underread) and I now have serious reservations about going back to him for further monitoring once I have the WLE done in three weeks at a melanoma clinic.  I keep asking myself - What if I listened to him?  What if he misses other strange birds hanging out on my skin?  Although I have been to him a few times for other mole removal and basic checks and we have a pretty good relationship otherwise, I am pretty sure this physician/patient relationship is doomed because he essentially missed this.  Have others out there had this happen to them?  Also, can anyone provide some coping advice as I wait for the re-review of my path slides and the WLE experience?  I am having a lot of anxiety even though my prognosis seems good at this time.  Thanks!

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