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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awillett1991's picture
Replies 4
Last reply 11/17/2012 - 7:20pm
Replies by: Tina D, awillett1991, POW

Long story short - 7 weeks went ago off Zelboraf while still responding, and had only tiny tumor in my heart, and brain and rest of body was all clear. Since then diagnosed w 2 brain mets, 4mm new and 6mm that had been supposedly destroyed by Zel, but same tumor regret. Had SRS last week for those.

Finished 3rd Round Ipi Monday, then put back on Zel, Wednesday due to regrowth of cardiac met.

Any advice on what to expect side effect wise w these 2 at the same time? Had loads of Zel side effects the first time around incl grade 4 rash.


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JerryfromFauq's picture
Replies 11
Last reply 11/17/2012 - 12:02pm

Putting New Melanoma Drugs to Work in Community Practice
Elsevier Global Medical News. 2011 Jul 18, JS MacNeil

Euphoria - there is no better word to describe the mood in the melanoma sessions at ASCO. For the first time ever, oncologists have two new drugs that can prolong the lives of patients with advanced melanoma. They also have a host of questions as to how to bring ipilimumab and vemurafenib into community practice. We asked four experts during the meeting for their thoughts on what comes next:

• Dr. Paul Chapman of Memorial Sloan-Kettering Cancer Center in New York; lead author of the BRIM-3 study of vemurafenib vs. dacarbazine in newly diagnosed patients.

• Dr. Jedd Wolchok of Memorial Sloan-Kettering Cancer Center; lead author of the phase III trial showing the efficacy of ipilimumab plus dacarbazine vs. placebo plus dacarbazine in newly diagnosed patients.

• Dr. Vernon K. Sondak, chair of cutaneous oncology and director of surgical education, H. Lee Moffitt Cancer Center & Research Institute in Tampa.

• Dr. Alexander M.M. Eggermont, general director of the Institut de Cancérologie Gustave Roussy in Villejuif, France.

Question: Should ipilimumab and vemurafenib be used together?

Everyone we asked said no, not outside of a clinical trial at least for now. No one knows whether the combination is safe or effective.

Dr. Chapman: We are about to start a phase III trial combining these to see if it is safe and making sure that vemurafenib does not inhibit the effect of ipilimumab. We all hope that this will result in sustained complete responses. That is what we all are looking for.

Dr. Wolchok: The natural next step that many of us are considering is how to integrate these two forms of therapy together. Vemurafenib directly targets the tumor by inhibiting BRAF kinase; ipilimumab really treats the patient by starting an immune reaction that hopefully will control the disease. These are very different approaches to cancer therapy. They are in no way mutually exclusive, and I believe them to be quite complementary.

I think it is important that the combination be explored in a clinical trial because I could make a list of reasons why these two drugs would work together; I could also create a list of reasons why they might not work well together and may even be antagonists. So, I think before oncologists begin to combine potentially approved medications outside of clinical trials, we [need to] have some idea that this is a safe and effective way to go. Until then, I think monotherapy is the best path forward outside of a clinical trial.

Dr. Sondak: If you combine ipilimumab with something else, sometimes the side effects aren't what you expect. Don't just take a patient and give them both and see what happens. That's not safe. You have to do this in a controlled way a research study as quickly as possible because it is the obvious next question.

Dr. Eggermont: I think at this point they should wait at least for the safety data on the combination.

Question: So which agent would you use first in a patient who has a BRAF mutation?

Again, there was unanimity - with respect to the patient who is very, very sick.

Dr. Chapman: I think that is a question is that is still open. Where I am on this question right now is that for a patient who is relatively well, who has a fairly good performance status, I would think about using ipilimumab first because that person may have time to respond to ipilimumab since it does take 3-6 months to have the full effect. On the other hand, a person who has a poor performance status and is sick and does not have time to respond to ipilimumab I would treat that person up-front with vemurafenib.

Dr. Sondak: I think there is going to be uniform agreement throughout the melanoma community that if you have a BRAF-mutant patient with widespread disease, symptomatic disease, high tumor burden that person is going to go immediately on to vemurafenib because nothing else is going to get a rapid response, a rapid resolution of symptoms.

The question is going to be [what to do] for 80% of patients who are BRAF mutant but have much less acute symptomatic disease. Maybe they have some lung metastases, some subcutaneous nodules, [and] they can't have it all removed surgically but they are still not in dire straits. And I think at our institution we are going to be very motivated to continue to use the immunologic therapies - the IL-2 for some patients, and ipilimumab for many patients because of the possibility that they will get a big benefit at the other end, not an immediate benefit but a long-term benefit. And then if that doesn't work, I think vemurafenib.

Dr. Eggermont: BRAF-positive patients especially the ones that have rapidly progressive disease or bulky disease that have little time - they will all be treated up front with the BRAF inhibitor. The BRAF-positive patients that have very small disease that is not rapidly progressing could actually also be managed by ipilimumab on first line and only on progression be managed by the BRAF inhibitor because ipilimumab needs more time to work with patients, to kick into activity and into an antitumor effect. ... All BRAF-negative patients would see ipilimumab in first line. That is for sure.

Question: The ipilimumab trial paired ipilimumab with dacarbazine. Is DTIC still an option?

Dr. Wolchok: Looking at the result as someone who has been taking care of patients with melanoma using ipilimumab for several years, I think it is still unknown whether dacarbazine should be added. My own opinion would be to oncologists in the community that if they are going to give ipilimumab at 3 mg/kg to stick with the monotherapy label because we really don't have data comparing ipilimumab with dacarbazine alone at that dose. And so I think we stick with what we know produces an overall survival benefit.

There are reasons to imagine the addition of dacarbazine could make results better by killing some cancer cells and releasing some antigenic debris that would serve as a target for the immune system. Chemotherapy can also be thought of as changing the tumor microenvironment, which might be advantageous, but chemotherapy could also be immunosuppressive. So we could really make a case either way that dacarbazine added to or detracted from or left things just the same.

Question: Will interleukin-2 still have a role in melanoma treatment?

Dr. Sondak: I am still going to use IL-2, and it makes the most sense if you have someone who uses IL-2 most of time, you will want to use that first before you use anything else. Why? Ipilimumab is tough on the patient. We want them in as good shape as possible. ... We know if they get IL-2 first and then get ipilimumab; the results are just as good, if not better. We don't know the opposite way. And we also know that a lot of people on ipilimumab get side effects. They wind up on steroids and other immunosuppressive drugs that would make it very difficult to put them on IL-2.

Vemurafenib is going to change a lot of things. A lot of people are too far gone to have surgery, too far gone to have IL-2. Now we have BRAF mutant melanoma [patients] who will get vemurafenib, and shrink down... If we could keep a close eye and figure out when is right time, we are going to do more surgery and maybe IL-2 in those patients because we are going to restore them to place where IL-2 is going to have more room to work. But it's not going to be 80% of people getting IL-2. It is going to be a very restricted group of people treated by a very specialized group of doctors.

Dr. Eggermont: I think IL-2 will move down in the options list. IL-2 will remain as an option in second or third line, and IL-2 will also be an option in combination with ipilimumab because [Dr.] Steve Rosenberg already did a trial in 36 patients ... and the majority of the complete responders are alive 6 years and longer and are still in complete remission (ASCO 2010, Abstract 8544). The combination of IL-2 and ipilimumab will be relaunched, I am sure.

Question: And interferon - Where will it fit in?

Dr. Sondak: We don't know how long we should treat people, how intensively, and how we should combine the new and the old, and the data that we have just doesn't sort it out. On the other hand, if you look at the whole landscape, it actually makes adjuvant treatment with interferon more important now than it used to be.

It's very clear that interferon treatment does delay recurrences in a substantial fraction of patients. It may not cure many people, but it delays recurrence in quite a few people, and right now today we are so much better off than we were in melanoma 2 years ago and I have no doubt that 2 years from now just with stuff we heard about at this meeting we will be much more clear on how do we use how do we take care of side effects not to mention other new exciting drugs that we hope 2 years from now will start to be available.

In the past we debated, does it even matter that we delay recurrence. The ASCO answer should be, "It absolutely matters to our patients." So interferon and any form of adjuvant therapy is suddenly a bridge. It is a shaky bridge - made with some ropes and a few planks - it isn't very sturdy to walk on, but we're trying to get from here, one place where it was safe to another place where hopefully we are better off and not at the bottom of ravine. It's real exciting - not just the data we already have but for the future and how many patients this will affect positively.

Dr. Eggermont: I think you need to separate the new drugs from the question, what are we going to do in adjuvant? In adjuvant right now, we will still have to wait for about 2.5-3 years for the outcome of the EORTC trial that randomized in double-blind ipilimumab vs. observation in patients with high-risk lymph node positive disease. That answer about ipilimumab in the adjuvant situation will not be there before 2.5 years from now. That means that until then there is only one kid on the block in the adjuvant setting, which is regular interferon, and the currently novel approach of pegylated interferon.

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

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SidneyGracie's picture
Replies 2
Last reply 11/17/2012 - 10:14am
Replies by: SidneyGracie, lhaley

My husband has finished whole brain radiation for 17 brain lesions and is being treated with zelboraf for approximately 30 liver lesions and 12 lung nodules.  The zelboraf started in early Sept and the radiation began about a week later for 10 days.  His head was very sensitive to the radiation and he got the normal redness, itching, and discoloration.  However, now he has developed a very bumpy surface on his forehead.  Doctors haven't seen that reaction before, but think it is because of the zelboraf making the skin more sensitive to the radiation.  Does anyone have experience with this type of rash or skin problem? We are currently using Eucerin on the surface of the forehead.  By the way, he is responding well to the Zelboraf.  Nodules in lungs almost gone.  Liver lesions have shrunk a lot and liver is back to normal size.  Brain lesions have shrunk significantly and there are no new lesions anywhere.

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Becky C.'s picture
Replies 2
Last reply 11/16/2012 - 5:14pm
Replies by: Anonymous, paul

Hi, everyone. I am a stage IV melanoma patient being treated for five small brain mets. I am currently doing radiation for those. Just had a pet scan done which showed three positive lymph nodes, no other mets besides brain. My oncologist is recommending three mponths of temodar.. From reading posts on here, I have seen where some patients have had good response with it, and some not so good. I would appreciate hearing success stories from fellow patients that have been treated with Temodar. Thanks a lot.

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susanr's picture
Replies 2
Last reply 11/16/2012 - 1:04am
Replies by: JerryfromFauq, Anonymous

Thanks for all who responded to my previous post.  You all are great !!!!!!  I am going to talk with my brother this weekend about the PD1 trials.  It will not be easy.  I have not finished his profile yet....Don't have time to eat lately...He is stage IV as of feb. 2012.  dx. 2/2009 stage III 3a. prim. acral left heel.

Mult. surgeries.  SNL, groin dissect.  left pelvic wall mass removed.  Mets to lung, nodes, left. femur, and monster abd. tumor. This is the one thats the big issue.  Failed yervoy...12/2011.  HAd temdor, abraxane, carbo and nexavar....some imporvement with lung mets but not the abdominal monster. 


All opinions and advice again appreciated.  Think Pd-1 is the way to go.  Just need some more advice/comments before I go to the brother.


Thank you all !!!!!!!!


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Anonymous's picture
Replies 0

Genentech recently updated their trial to increase enrollments & more locations including Europe.

Increasing the enrollment & adding more locations could be an indication that this drug (MPDL3280A) is getting a good objective response rate

Study of the Safety and Pharmacokinetics of MPDL3280A Administered Intravenously As a Single Agent to Patients With Locally Advanced or Metastatic Solid Tumors

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hope4cure1's picture
Replies 16
Last reply 11/15/2012 - 4:39pm

We got scan results today.  My husband is now 11 months NED.  September, 2010 he had 2 lung mets removed surgically.  February 2011 he had 4 liver mets and 2 lymph nodes in his chest. He started a combo of Carboplatin, Abraxane, Avastin.  Since last September, he has just been on Avastin for maintenance. I hesitate to post this because I know that chemo doesn't have the greatest response, but I do want to give hope to anyone who feels that they are being thrown chemo in desperation. Each case is unique, which may explain the varying responses to treatment.

When I first came to this forum, I scoured the board for whispers of hope from people who were seeing success.  I hung on every NED. I think many of us do that.  Long time survivors here impart hope.The sage advice of so many caring people are gifts of knowledge. The strength, support, compassion and courage that so many of you have shown here touches many deeply.  Each loss hurts, each good report lifts.  How a group of virtual strangers can mean so much baffles me.  You do, and I thank you a million times over.


Become what you admire.

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squirrell68's picture
Replies 10
Last reply 11/15/2012 - 2:45pm
Replies by: squirrell68, EmilyandMike, jag, Phyllis in IA, Phil S, Anonymous

My brother has just completed his third round of bio chemo at the Sheba Centre, Israel. His scan after the second round showed 60% tumour reduction. This is my first posting and I would love to hear from anyone who has had a good response to this treatment. A quick summary of my brother's melanoma, he was diagnosed in June 2012 at stage 4 with an unknown primary, although it may be mucosal as a tumour was in his anus. He has extensive liver mets and a brain met, which has been treated with SRS, no other systematic treatment. He is BRAF and CKIT negative.

He is feeling 100% better and many of his liver mets symptoms have disappeared. I am trying to stay positive but between treatments I start worrying about the 'what ifs'. It would be so nice to hear from other people who have been through this treatment. We are from the UK but don't seem to be able to find anyone in the UK who has had biochemo or even IL2.

Determine to keeping fighting.

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Anonymous's picture
Replies 2
Last reply 11/15/2012 - 2:30pm
Replies by: MikeWI, Anonymous

My family member was just diagnosed with Melanoma of unknown origin (axial tumor). He will be having PET and MRI this friday and surgery next Tuesday for complete lymphnode dissection. They stage him at III prior to PET. They are suggesting Ipilimumab and Interferon.

Is anyone familiar with the Marshfiled group of oncology physicians and surgeons? If so, is he in good hands? Should they seek trials before going down the Ipil or IF road?

Thank you for any input, this board is invaluable.

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Anonymous's picture
Replies 6
Last reply 11/15/2012 - 1:31pm
Replies by: W., Anonymous, Fen, Janner, POW

"Globally near 40% of CMM patients develop clinical metastases 5 years or so after initial treatment". """dddddd  I


I didn't think it was as high as 40%, that seems quite high. . I thought more than 60% were caught in "early" "curable" stages

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cricket's picture
Replies 6
Last reply 11/15/2012 - 6:12am

Can anyone recommend a treament center and melanoma specialist in Charlotte, NC? Thank you!


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Roxy1453's picture
Replies 2
Last reply 11/15/2012 - 5:26am
Replies by: aldakota22, DeniseK

This photo shows my friends and me having fun with pictures and chocking the cancer out of me! I try to always stay positive and have fun!!


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

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Roxy1453's picture
Replies 3
Last reply 11/15/2012 - 3:15am
Replies by: Sandy11, Roxy1453, kylez

Well, I have no real answer for my rash! Dr doesn't think it's from the IPI it's been too long. But he doesn't know what it is. I haven't changed anything that I can think of and I have an allergies.

I had my PET Scan today and they couldn't read it very well because of the rash. I have to call Wed. He didn't see anything in my organs so that was good. The spot behind my knee looks like it shrank but he needs to talk to radiology about a term they used that he didn't understand.

I go back in in two weeks to check on my rash. I'm on prednisone and tapering off by then.

I guess I wait one more day for the results of my scan!


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

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DeniseK's picture
Replies 15
Last reply 11/15/2012 - 3:04am

Well, Pet Scan today, turns out to not be so good.  It appears that there are 5 tumors.  One on my arm which I knew about, one in my right breast next to original surgery site (this one may be a lymph node) and 3 tumors on/in my right lung.  One is very large and looks like it's next to my spine.  I will be discussing surgery tomorrow with my surgeon to hopefully remove all of these!  I've read that people can survive lung involvment for years.  I'm trying to research as much as I can but feel kind of overwhelmed right now.  Can anyone give me any proven treatments or experiences to share that can help me and my family have a better outlook on this?  I need some hope right now that I can beat this!! 

Thanks so much!! 

Love to all my fellow warriors!!

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

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