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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Markers to help Predict TIL success?

http://www.jci.org/articles/view/73639

PD-1 identifies the patient-specific CD8+ tumor-reactive repertoire infiltrating human tumors

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

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Ninniditti's picture
Replies 1
Last reply 12/3/2014 - 11:22am
Replies by: arthurjedi007

Hi! After nivo and ipi I only had one treatment left, dacarbazine. I didn't belive much in that but as the only option I started dcb in october. I have melanoma in my sinus on both sides one had breaken through the skullbone tuching the brain. I had a lot of pain and was tired all the time. The last weeks the pain is almost gone and the MR this week showed that my tumores hadn't grown at all in two months and the tiny metastas I had in my lung was gone. I now hope that my tumors wil stay stable until some new treatment come up, a treatment that doesn't involve immunoterapi. I think about vaccines injected directly into the tumur like T-VECK. I am so confused as I didm't except any advantage of dacarbazine and now I am optimistic about celebrating christmas. I really wish all of you a wonderful advent and christmas!

Inger

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Replies by: JerryfromFauq

Hello, this is my first post here. So recently I read a study that shows that (even one time) users Viagra seem to incur higher rates of melanoma. This was only a correlational study, but the correlation was found with melanoma specifically, not other forms of skin cancer which may become more common with age. Interest in this research was ignited when scientists noted that, essentially, Viagra (and other drugs similar to Viagra such as Levitra/Cialis/Staxyn) mimics the process melanoma uses for spreading. This terrifies me because was diagnosed with in situ melanoma at age 17 (around 2010). Since then, I have had a number of moles containing “atypical cells” removed. I have always been uneasy about the fact that threatening moles keep popping up, despite the fact I have no family history and I have always stayed indoors.

Possibly also concerning, I have been prescribed Viagra and Staxyn in the last year. As soon as I read this research, I ceased consumption of any ED medications in the interest of not dying. My intention is to spread awareness about this research. A rational person would not freak out upon reading correlational research, but I only recently became serious about avoiding the sun by all means at my disposal. This includes wearing UV protected clothing and wearing sun screen at all points of the day/night/year. So I became very discouraged when I read that a medicine I was taking MAY increase my chance of melanoma. It such a random factor; I couldn’t have possibly predicted this type of thing. Has anyone heard about this? Can any experts chime in? I have no idea who browses these boards. Thank you for reading and spread the word please. You will have to Google the study to find it. I do not know this forum's policy on linking outside sources.

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Mat's picture
Replies 3
Last reply 12/4/2014 - 12:43am

I'm posting this because the MRF folks (presumably) read our posts.  My posts are continuously being bounced by your spam blocker.  Very annoying.  Makes one think time (and $) is better spent on the MIF site than here.

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Kmiles's picture
Replies 5
Last reply 12/11/2014 - 11:14pm
Replies by: brittanyx, Anonymous, Ed Williams, Kmiles, Marianne quinn

Today I got my results from SNLB.  Both my right and left side showed cancer.  I will have the complete lymph node dissection between Christmas and New Years.  Can anyone tell me what this will be like?  Also they are suggesting interferon.  I'm in the beginning research search so anything you guys can tell me is VERY much appreciated.  

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arthurjedi007's picture
Replies 13
Last reply 12/4/2014 - 6:09am

Well I really like my radiation onc doc. He is very optimistic. He thinks my walking issue has to do with the tumors in my hip where the bone and socket meet. He thinks if he radiates that ball and socket area it should go a long way with helping me walk good again. I mentioned the tumor in my knee my med onc doc talked about. He double checked and said there is a small tumor there so he will take care of it too.

He also mentioned there are some things going on with my lower spine that might be pressing on nerves but he wants to try the other first. He also did the same leg, feet, arm, hand test they kept doing over and over last winter when I was almost paralyzed so he doesn't believe it is an issue with my spinal cord or spine tumors so that is a huge relief.

There will be 10 zaps. He thinks I should start walking better after the 3rd zap. I hope so. I get scanned and targeted tomorrow with Thursday as the tentative date for the first zap but they aren't sure yet.

Artie

 

 

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StephyD83's picture
Replies 10
Last reply 12/5/2014 - 6:16am

Hi Everyone-

I went to UCSF Melanoma Center yesterday for a 2nd opinion & they reviewed all of my pathology slides. They found that I never had a Severely Atypical Mole that was not re-excised & turned into Melanoma InSitu like I had thought. It turns out that 2 years ago it was actually Invasive Melanoma 0.4 mm in thickness, extending intraepidermally to the peripheral margin Stage 1A.

So the Invasive Melanoma was left on my face for 17+ months & retaken out 2 more times this past March & now I am being told that I need to have another surgery because I have never had the proper margins of 1 cm I only have 5 mm at this point.

I also showed her that my PET/CT Scan light up on a few areas my Spine, Ovaries, Lymph Nodes under both of my arms, & my right knee. She said this needs to be looked into.

What do you all think of this?

Thanks!
Stephanie

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sgrain's picture
Replies 3
Last reply 12/3/2014 - 7:13am

Thanks to all that responded to my earlier PD-1 posts.  After being pulled off PD-1 after 3 infusions, I met with Dr. Dronka at Mayo Clinic in Rochester, MN.  Her recommendation was to stay on PD-1 for 3 more cycles and redo PET scan.  She also said that sometimes things get worse before they get better with these new drugs so patience is key.

She ran the PD-1 trials at Mayo and one of her patients in 2009 was expected to have only a couple of months to live.  He was on the trial for 2 years and is currently doing fine.  He still has some tumors but they are not growing or affecting his life in any way.  She's very encouraged by the trial results she's been seeing so I'm going back on it and following her advice.

I'll post later with PET results in a couple months.  Sounds promising though.  Good luck to all and thanks again for your earlier feedback.  It really supported what she was recommending.

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jenny22's picture
Replies 17
Last reply 12/4/2014 - 9:43am

I wanted to write and again say thank you to all those who repsonded to my VERY first post recently.

I had presented my history and current situation.....Now have addtional info and would love to hear any further thoughts.

Got all the scans back and ALL were negative (Brain MRI and CTS of neck, chest, ab, and pelvis).....so no distant mets, calling it in transmit mets......Only thing is cannot confirm stage IIIB or IIIC, since no way to know about LN......(explained in my first post, I was never able to have a SNB due to cosmetic surgery ....) Even asked again now and was told no way to do any type of LN sampling as everything has been so "rearranged"....so that is why cant confirm IIIb or IIIC.....

I need to have additional surgery for one of the 2 small mets that needs some further excision. 

Now, to my question.....I met with MED ONC at NYU yesteray (ana pavllick....loved her)

Since i would be considered NED after upcoming surgery she said she wouldnt treat other than a vaccine trial which i could start in  january, and then have close surveillance, scans etc......I am concerned about no treatment and just waiting.....as surgeon at Sloan (dr. Coit) told me it is MORE LIKELY THAN NOT that these recurrences will come back again.....I asked about adjuvant treatment to help prevent recurrences in this setting and sounds like clinical trials are only options....BUT NYU onc said she would not treat now, other than vaccine . 

I am seeing Michael Postow at Sloan on thursday and will get his opinion. Surgery is scheduled for saturday.

I was told last year I had a VERY LOW probablitlriy of recurrence based on a1.5 mm melanoma, and now am stage III with intransmit mets....hard to do nothing but wait for this to come back.

Just wondered what others thoughts would be.

This site is invaluable and thanks to all to have been here longer.

 

 

 

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JustMeInCA's picture
Replies 4
Last reply 12/5/2014 - 6:19am

Dad got the approval today from his oncologist at UCSF to try cannabis oil for pain management. He said he's seen other people do very well with it and that there are no contraindications with his Keytruda treatments.

Next step: off to the dispensary. The doctor says that the note from Dad's PCP on a prescription pad is all we need, as there is no actual "prescription" that can be written for it anyway. (There is some irony there somewhere that we have this legal drug that is completely unregulated.) He just said that no one has ever OD'ed on cannabis but that we'll want to start low and then add more as needed after 30 minutes or so.

Welcome to the Wild West.  

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Here is the transcript for a recent 60 minutes on cancer drug pricing and doctor compensation that I found fascinating.  Maybe you will too.

For those unable to watch the video, here is the transcript of “The Cost of Cancer Drugs” which aired on Oct. 5, 2014.

Cancer is so pervasive that it touches virtually every family in this country. More than one out of three Americans will be diagnosed with some form of it in their lifetime. And as anyone who’s been through it knows, the shock and anxiety of the diagnosis is followed by a second jolt: the high price of cancer drugs.

They are so astronomical that a growing number of patients can’t afford their co-pay, the percentage of their drug bill they have to pay out-of-pocket. This has led to a revolt against the drug companies led by some of the most prominent cancer doctors in the country.

Dr. Leonard Saltz: We’re in a situation where a cancer diagnosis is one of the leading causes of personal bankruptcy.

Dr. Leonard Saltz is chief of gastrointestinal oncology at Memorial Sloan Kettering, one of the nation’s premier cancer centers, and he’s a leading expert on colon cancer.

Lesley Stahl: So, are you saying in effect, that we have to start treating the cost of these drugs almost like a side effect from cancer?

Dr. Leonard Saltz: I think that’s a fair way of looking at it. We’re starting to see the term “financial toxicity” being used in the literature. Individual patients are going into bankruptcy trying to deal with these prices.

“I do worry that people’s fear and anxiety’s are being taken advantage of.”
Lesley Stahl: The general price for a new drug is what?

Dr. Leonard Saltz: They’re priced at well over $100,000 a year.

Lesley Stahl: Wow.

Dr. Leonard Saltz: And remember that many of these drugs, most of them, don’t replace everything else. They get added to it. And if you figure one drug costs $120,000 and the next drug’s not going to cost less, you’re at a quarter-million dollars in drug costs just to get started.

Lesley Stahl: I mean, you’re dealing with people who are desperate.

Dr. Leonard Saltz: I do worry that people’s fear and anxiety are being taken advantage of. And yes, it costs money to develop these drugs, but I do think the price is too high.

The drug companies say it costs over a billion dollars to bring a new drug to market, so the prices reflect the cost of innovation.

The companies do provide financial assistance to some patients, but most people aren’t eligible. So many in the middle class struggle to meet the cost of their co-payments. Sometimes they take half-doses of the drug to save money. Or delay getting their prescriptions refilled.

Dr. Saltz’s battle against the cost of cancer drugs started in 2012 when the FDA approved Zaltrap for treating advanced colon cancer. Saltz compared the clinical trial results of Zaltrap to those of another drug already on the market, Avastin. He says both target the same patient population, work essentially in the same way. And, when given as part of chemotherapy, deliver the identical result: extending median survival by 1.4 months, or 42 days.

Dr. Leonard Saltz: They looked to be about the same. To me, it looked like a Coke and Pepsi sort of thing.

Then Saltz, as head of the hospital’s pharmacy committee, discovered how much it would cost: roughly $11,000 per month, more than twice that of Avastin.

60 MINUTES OVERTIME
THE “EYE POPPING” COST OF CANCER DRUGS
Lesley Stahl: So $5,000 versus $11,000. That’s quite a jump. Did it have fewer side effects? Was it less toxic? Did it have…

Dr. Leonard Saltz: No…

Lesley Stahl: …Something that would have explained this double price?

Dr. Leonard Saltz: If anything, it looked like there might be a little more toxicity in the Zaltrap study.

He contacted Dr. Peter Bach, Sloan Kettering’s in-house expert on cancer drug prices.

Lesley Stahl: So Zaltrap. One day your phone rings and it’s Dr. Saltz. Do you remember what he said?

Dr. Peter Bach: He said, “Peter, I think we’re not going to include a new cancer drug because it costs too much.”

Lesley Stahl: Had you ever heard a line like that before?

Dr. Peter Bach: No. My response was, “I’ll be right down.”

Lesley Stahl: You ran down.

Dr. Peter Bach: I think I took the elevator. But yes, exactly.

Bach determined that since patients would have to take Zaltrap for several months, the price tag for 42 days of extra life would run to nearly $60,000. What they then decided to do was unprecedented: reject a drug just because of its price.

Dr. Peter Bach: We did it for one reason. Because we need to take into account the financial consequences of the decisions that we make for our patients. Patients in Medicare would pay more than $2,000 a month themselves, out-of-pocket, for Zaltrap. And that that was the same as the typical income every month for a patient in Medicare.

Lesley Stahl: The co-pay.

Dr. Peter Bach: Right. 20 percent. Taking money from their children’s inheritance, from the money they’ve saved. We couldn’t in good conscience say, “We’re going to prescribe this more expensive drug.”

“It was a shocking event. Because it was irrefutable evidence that the price was a fiction.”
And then they trumpeted their decision in the New York Times. Blasting what they called “runaway cancer drug prices,” it was a shot across the bow of the pharmaceutical industry and Congress for passing laws that Bach says allow the drug companies to charge whatever they want for cancer medications.

Dr. Peter Bach: Medicare has to pay exactly what the drug company charges. Whatever that number is.

Lesley Stahl: Wait a minute, this is a law?

Dr. Peter Bach: Yes.

Lesley Stahl: And there’s no negotiating whatsoever with Medicare?

Dr. Peter Bach: No.

Another reason drug prices are so expensive is that according to an independent study, the single biggest source of income for private practice oncologists is the commission they make from cancer drugs. They’re the ones who buy them wholesale from the pharmaceutical companies, and sell them retail to their patients. The mark-up for Medicare patients is guaranteed by law: the average in the case of Zaltrap was six percent.

Dr. Leonard Saltz: What that does is create a very substantial incentive to use a more expensive drug, because if you’re getting six percent of $10, that’s nothing. If you’re getting six percent of $10,000 that starts to add up. So now you have a real conflict of interest.

But it all starts with the drug companies setting the price.

Dr. Peter Bach: We have a pricing system for drugs which is completely dictated by the people who are making the drugs.

Lesley Stahl: How do you think they’re deciding the price?

Dr. Peter Bach: It’s corporate chutzpah.

Lesley Stahl: We’ll just raise the price, period.

Dr. Peter Bach: Just a question of how brave they are and how little they want to end up in the New York Times or on 60 Minutes.

That’s because media exposure, he says, works. Right after their editorial was published, the drug’s manufacturer, Sanofi, cut the price of Zaltrap by more than half.

Dr. Peter Bach: It was a shocking event. Because it was irrefutable evidence that the price was a fiction. All of those arguments that we’ve heard for decades, “We have to charge the price we charge. We have to recoup our money. We’re good for society. Trust us. We’ll set the right price.” One op-ed in the New York Times from one hospital and they said, “Oh, okay, we’ll charge a different price.” It was like we were in a Turkish bazaar.

Lesley Stahl: What do you mean?

Dr. Peter Bach: They said, “This carpet is $500″ and you say, “I’ll give you $100.” And the guy says, “Okay.” They set it up to make it highly profitable for doctors to go for Zaltrap instead of Avastin. It was crazy!

But he says it got even crazier when Sanofi explained the way they were changing the price.

Dr. Peter Bach: They lowered it in a way that doctors could get the drug for less. But patients were still paying as if it was high-priced.

Lesley Stahl: Oh, come on.

Dr. Peter Bach: They said to the doctor, “Buy Zaltrap from us for $11,000 and we’ll send you a check for $6,000.” Then you give it to your patient and you get to bill the patient’s insurance company as if it cost $11,000. So it made it extremely profitable for the doctors. They could basically double their money if they use Zaltrap.

“High cancer drug prices are harming patients because either you come up with the money, or you die.”
All this is accepted industry practice. After about six months, once Medicare and private insurers became aware of the doctor’s discount, the price was cut in half for everyone.

John Castellani: The drug companies have to put a price on a medicine that reflects the cost of developing them, which is very expensive and takes a long period of time, and the value that it can provide.

John Castellani is president and CEO of PhRMA, the drug industry’s trade and lobbying group in Washington.

Lesley Stahl: If you are taking a drug that’s no better than another drug already on the market and charging twice as much, and everybody thought the original drug was too much…

John Castellani: We don’t set the prices on what the patient pays. What a patient pays is determined by his or her insurance.

Lesley Stahl: Are you saying that the pharmaceutical company’s not to blame for how much the patient is paying? You’re saying it’s the insurance company?

John Castellani: I’m saying the insurance model makes the medicine seem artificially expensive for the patient.

He’s talking about the high co-pay for cancer drugs. If you’re on Medicare, you pay 20 percent.

Lesley Stahl: Twenty percent of $11,000 a month is a heck of a lot more than 20 percent of $5,000 a month.

John Castellani: But why should it be 20 percent instead of five percent?

Lesley Stahl: Why should it be $11,000 a month?

John Castellani: Because the cost of developing these therapies is so expensive.

Lesley Stahl: Then why did Sanofi cut it in half when they got some bad publicity?

John Castellani: I can’t respond to a specific company.

Sanofi declined our request for an interview, but said in this email that they lowered the price of Zaltrap after listening “to early feedback from the oncology community and … To ensure affordable choices for patients…”

Dr. Hagop Kantarjian: High cancer drug prices are harming patients because either you come up with the money, or you die.

Hagop Kantarjian chairs the department of leukemia at MD Anderson in Houston. Inspired by the doctors at Sloan Kettering, he enlisted 119 of the world’s leading leukemia specialists to co-sign this article about the high price of drugs that don’t just add a few weeks of life, but actually add years, like Gleevec.

It treats CML, one of the most common types of blood cancer that used to be a death sentence, but with Gleevec most patients survive for 10 years or more.

60 MINUTES: SEGMENT EXTRAS
NAT’L ONCOLOGISTS GROUP TACKLES SPIRALING DRUG COSTS
Dr. Hagop Kantarjian: This is probably the best drug we ever developed in cancer.
Lesley Stahl: In all cancers?

Dr. Hagop Kantarjian: So far. And that shows the dilemma, because here you have a drug that makes people live their normal life. But in order to live normally, they are enslaved by the cost of the drug. They have to pay every year.

Lesley Stahl: You have to stay on it. You have to keep taking it.

Dr. Hagop Kantarjian: You have to stay on it indefinitely.

Gleevec is the top selling drug for industry giant Novartis, bringing in more than $4 billion a year in sales. $35 billion since the drug came to market. There are now several other drugs like it. So, you’d think with the competition, the price of Gleevec would have come down.

Dr. Hagop Kantarjian: And yet, the price of the drug tripled from $28,000 a year in 2001 to $92,000 a year in 2012.

“They are making prices unreasonable, unsustainable and, in my opinion, immoral.”
Lesley Stahl: Are you saying that the drug companies are raising the prices on their older drugs.

Dr. Hagop Kantarjian: That’s correct.

Lesley Stahl: Not just the new ones. So you have a new drug that might come out at a $100,000, but they are also saying the old drugs have to come up to that price, too?

Dr. Hagop Kantarjian: Exactly. They are making prices unreasonable, unsustainable and, in my opinion, immoral.

When we asked Novartis why they tripled the price of Gleevec, they told us, “Gleevec has been a life-changing medicine … When setting the prices of our medicines we consider … the benefits they bring to patients … The price of existing treatments and the investments needed to continue to innovate…”

[Dr. Hagop Kantarjian: This is quite an expensive medication.]

Dr. Kantarjian says one thing that has to change is the law that prevents Medicare from negotiating for lower prices.

Dr. Hagop Kantarjian: This is unique to the United States. If you look anywhere in the world, there are negotiations. Either by the government or by different regulatory bodies to regulate the price of the drug. And this is why the prices are 50 percent to 80 percent lower anywhere in the world compared to the United States.

Lesley Stahl: Fifty percent to 80 percent?

Dr. Hagop Kantarjian: Fifty percent to 80 percent.

Lesley Stahl: The same drug?

Dr. Hagop Kantarjian: Same drug. American patients end up paying two to three times more for the same drug compared to Canadians or Europeans or Australians and others.

Lesley Stahl: Now, Novartis, which makes Gleevec, says that the price is fair because this is a miracle drug. It really works.

Dr. Hagop Kantarjian: The only drug that works is a drug that a patient can afford.

The challenge, Dr. Saltz at Sloan Kettering says, is knowing where to draw the line between how long a drug extends life and how much it costs.

Lesley Stahl: Where is that line?

Dr. Leonard Saltz: I don’t know where that line is, but we as a society have been unwilling to discuss this topic and, as a result, the only people that are setting the line are the people that are selling the drugs.

Source: http://www.cbsnews.com/news/the-cost-of-cancer-drugs/

(((c)))

 

Maggie - Stave IV (lung mets unknown primary) since July 2012

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My husband is on Fragmin due to a pulmonary embolism in September. He is scheduled to have stereotactic brain radiation  this week. We are waiting to hear back from anti coagulation specialist as to whether he should withhold or continue Fragmin on day of procedure. Radiation oncologist has weighed in: stay on Fragmin. Anyone else out there with related experience?

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vivian's picture
Replies 17
Last reply 12/3/2014 - 5:26pm

I have a second left lung met two years after having one removed by VATS.  This one seems to be growing quickly but is still small (1 cm at last scan) and causing no issues.  Nothing else lit up on  a recent PET, although one tiny new nodule in the right lung is visible on CT.  The docs all say surgery is the best way to go, and I agree, but I am wondering why go through the surgery when it isn't causing me any problems yet?  Why not wait until I have bothersome symptoms?  My melanoma seems to be "indolent" so far - showing up every couple of years with solitary mets, so only surgery has been needed.  I understand that there is no chance that removing this met will be curative in the long term and eventually some systemic treatment will be needed.  

What do you guys think about just letting this thing go until it is a problem or other things show up?  I feel great right now and hate the thought of making myself and my husband suffer through a procedure that while not horrible, is certainly not pleasant!  I would appreciate any advice...

Lear

 

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sgrain's picture
Replies 12
Last reply 12/2/2014 - 3:31pm

I recently posted my history with melanoma and the drugs I've tried lately, including PD-1.  I only had 3 infusions for a 9 week length of time and then had my PET scan which showed new mets.  It was then that my oncologist said PD-1 had failed and we stopped the treatment.

My husband has done a lot of research since that time and we have seen many articles and graphs that show partial or complete response after approximately 15 weeks.   

I guess my question to any of you that are currently on, or have been on, PD-1, how long did it take before you had a partial or complete response, or how long did it take before your oncologist pulled you off it due to it failing?  My concern is that we didn't give it enough time.  Here are some of the snip-its he found:

“The anticancer mechanism of action is different with checkpoint inhibitors as compared with chemotherapy.  …  As a clinical consequence, antitumor responses that are delayed, as compared with those for chemotherapy or targeted agents, may occur because it may take time for an antitumor immune response to be mobilized and prove effective at killing tumor cells.  ”

“Therefore caution should be taken in abandoning therapy early. In general these delayed responses are not observed in patients with rapidly progressive, symptomatic disease.”

One of the Time to Response charts show many partial/complete responses not happening until well past 15 weeks.  

Delayed responses following initial increase in tumor burden also observed in some patients, indicative of immune-mediated response

Sandy

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