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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LibbyinVA's picture
Replies 6
Last reply 6/7/2013 - 7:06pm

In the interest of giving some hope to others, just want to let everyone know that today I am celebrating my 8th year of being NED. I won't bore you with all the details as you can check my profile if you want more information. Melanoma certainly left its mark on me but I am still winning. Believe in miracles...I am one!

LibbyinVA-Stage IIIb

I have melanoma but melanoma does not have me!

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ecc26's picture
Replies 12
Last reply 6/8/2013 - 10:01am
Replies by: ecc26, jP85, DeniseK, Anonymous, DonnaK, POW


I posted a little while ago looking for others who might have had new tumors show up after an apparent response to IL2 and also asking about the bruising/inflamation that was happening with these new tumors. Thank you to those of you who responded. I do appreciate it. 

At the time of the last posting I had had a CT which ended up showing that all of the new tumors were subQ, which is the best possible scenario. On Monday I also had an MRI in preparation for an appointment at Dana-Farber (yesterday) to investigate whether I should persue clinical trials (specifically for the PD1 drugs or a PD1/Ipi combo trial as I am Ipi naive) or try Ipi first. When I picked up the imaging discs from the MRI, CT and the PET from before my last round of IL2 I read the MRI report and found that I have 7 brain mets with "several" in the leptomeninges (network of blood vessels, etc surrounding the brain) as well. These results disqualify me from the clinical trials and are too numerous for either surgery or gamma knife. It changed the conversation at Dana-Farber from "what trials are there and should I persue them?" to "is there anything I can do?".

The advice was to pursue whole brain radiation concurrently with Ipi (to try and take advantage of the abscopal effect) in hopes of at least reducing/stabilizing the tumors to hopefully make me eligible for trials in a few months. I have an appointment with my local oncologist tomorrow where things will likely be set in motion. He gave me a paper (haven't read it yet) showing that Ipi works just as well in those with brain mets as in those without them, though it still has the same low response rate. We had a discussion about the abscopal effect and the possibility that it increases the chances of getting a response from Ipi (he gave me a paper on that too). None of this makes me any less concerned about the fact that my brain filling with tumors, or makes me feel any better about what they indicate prognostically. 

I'm also trying to track down my BRAF results (or if it was ever done, as I was told it was). 

Has anyone else done both radiation and ipi at the same time? If so, what were your side effects? I have avoided researching radiation so far in my process hoping I would never have to so I don't know as much about it- how long is a course for whole brain radiation? How long do the side effects (nausea, etc) last after your last dose? Do they dissipate quickly or hang around for a long time?

Any input is appreciated,


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flvermonter's picture
Replies 3
Last reply 6/6/2013 - 8:15pm

hi again
sitting at Moffitt while my husband is in surgery with Dr Zager. I know I will meet with him after, but wondered what options for treatment next. they are removing the rest of the nodes on the right side. I read that chemo is not usually an option and also not normally radiation. I know we will have to wait for the pathology report. what would be the options for his treatment next. thanks mary

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NYKaren's picture
Replies 4
Last reply 6/7/2013 - 3:25pm
Replies by: NYKaren, jag, POW, kylez

So Dr. Wolchok just called to tell me the Merck Phase 1 PD1 trial I was aiming for has been closed by Merck--or at least they've closed seats at sloan. He said it was Merck's edict with no exceptions. Boy am I upset.
He said my 2 choices are to go back on Zel or see Dr. Pavlick at NYU where they have seats in the phase 2 trial w/the chemo arm.
I choose to at least see Dr P next week and see what she thinks. I know she's good, it's not a matter of that, it's whether I want to possibly go through the effects of chemo. But I'm afraid if I go back on Zel, the Mel will just come back soon, when there might not be a trial seat available.

Any ideas, thoughts, suggestions??

Don't Stop Believing

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News June 02, 2013

Adding GM CSF to Ipilimumab Extends Survival in Metastatic Melanoma


IMNG Medical Media,  2013 Jun 02 , MJ Dales

Dr. F. Stephen Hodi, Jr.

CHICAGO (IMNG) – Combining two approved therapies – GM CSF and ipilimumab – extended overall survival rates by 35% and resulted in fewer grade 3-5 adverse events when compared with ipilimumab alone in a randomized study of 245 patients with metastatic melanoma.

At 1 year, the overall survival rate in the combination therapy group was 69%, with a median follow-up of nearly 18 months. At 1 year, survival in the ipilimumab-only group was 53% with a median follow-up of nearly 13 months, Dr. F. Stephen Hodi, Jr. reported at the annual meeting of the American Society of Clinical Oncology.

This is the first phase II trial to look at ipilimumab (Yervoy, Bristol-Myers Squibb) and the granulocyte macrophage colony-stimulating factor (GM CSF) sargramostim (Leukine, Sanofi) in combination in any cancer, said Dr. Hodi, the principal investigator for the trial, which was conducted by the ECOG-ACRIN Cancer Research Group (formerly the Eastern Cooperative Oncology Group) trial. In this study, ipilimumab was used at a dose of 10 mg/kg, which is higher than the FDA-approved dose of 3 mg/kg.

“We are waiting for the data to mature in ongoing studies examining the relative efficacy of 3 mg/kg and 10 mg/kg dosing,” said Dr. Hodi, director of the melanoma center at Dana-Farber Cancer Institute in Boston.

The results in the current trial are another indication of the impact that immunotherapy can have for patients with advanced melanoma. Since both GM CSF and ipilimumab are commercially available, oncologists need to determine the best way to apply these findings in everyday practice. The next step will then be to define the role of GM CSF in combination with other immune checkpoint targeting drugs, such as therapies that target the PD-1 and PD-L1 pathway, he said.

“We have been using GM CSF in melanoma as a stand-alone therapy,” Dr. Lynn M. Schuchter, the C. Willard Robinson Professor of Hematology-Oncology at the University of Pennsylvania, Philadelphia, and an expert on melanoma, said at a press conference where the study results were announced. “It will be interesting to see if payers will cover this (combination treatment).”

Ipilimumab targets CTLA-4, a protein that keeps immune T-cells in an inactive state. GM CSF is a growth factor commonly used to boost white blood cell counts after chemotherapy or stem cell transplantation.

For this study, 245 patients were randomized to receive ipilimumab plus GM CSF or ipilimumab alone. All study participants were in otherwise good health, with an ECOG performance status of 0-1 and adequate end-organ function, no autoimmune disease, and no prior use of CTLA-4 blockade or CD137 agonists. All had radiographically measurable metastatic melanoma, but with no CNS metastases, and had received up to one prior treatment over 4 weeks before starting in the trial.

The 123 patients randomized to the combination therapy were given sargramostim at 250 micrograms injected subcutaneously on day 1-14 of a 21 day cycle. For induction therapy, ipilimumab was given at a dose of 10 mg/kg intravenously once every 3 weeks for four cycles as induction therapy and once every 12 weeks as maintenance therapy. The 122 patients randomized to ipilimumab alone received the drug on the same schedule.

In both study arms, tumor shrinkage rates were comparable at 11% and 14%, and progression-free survival was similar at about 3 months. But the overall survival rate was longer in the combination treatment arm. One year after the start of therapy and with a median follow-up of 13.3 months, 69% of patients given the combination therapy and 53% of those who got ipilimumab alone were still alive, for a 35% lower risk of death with the combination therapy (hazard ratio, 0.64; P = .014).

Additionally, the combination treatment was associated with fewer serious side effects, compared with ipilimumab alone. The most significant differences were in lung and gastrointestinal toxicities.

Grade 3-5 adverse events occurred in 45% of patients given the combination therapy and in 57% given ipilimumab alone (p2 = 0.078). There were two possible treatment-related deaths in the combination arm (one colonic perforation and one cardiac arrest) and 7 possible treatment-related deaths in the ipilimumab-only arm: (two cases of multi-organ failure, two colonic perforations, one case of liver failure, and two cases of respiratory failure).

The research was supported in part by the National Cancer Institute (Cancer Therapy Evaluation Program), Sanofi, and Bristol-Myers Squibb. Dr. Hodi disclosed receiving research funding and a being a consultant or in an advisory role with Bristol-Myers Squibb.





News June 03, 2013

Selumetinib is First Therapy to Shrink Uveal Melanomas


IMNG Medical Media,  2013 Jun 03 , MJM Dales

Dr. Richard D. Carvajal

CHICAGO (IMNG) – Selumetinib, an investigational MEK 1/2 inhibitor, shrank uveal melanomas in half of all treated patients, with a duration of disease control that was more than twice that achieved with the comparator therapy temozolomide, based on the final analysis of data from 98 patients in a phase II crossover study.

This is the first clinical trial to identify a drug that improves clinical outcome in patients with advanced melanoma of the eye, said Dr. Richard D. Carvajal, who presented the data at the annual meeting of the American Society of Clinical Oncology.

“Selumetinib is a new standard of therapy for uveal metastatic melanoma,” he said at a press conference announcing the results. Before this study, there was no evidence that any systemic therapy was truly effective in this disease. In eight different clinical trials conducted in the last decade, 2 of 157 patients have responded to potential new therapies, including chemotherapy, targeted therapy, and immunotherapy.

With about 2,000 cases diagnosed each year in the United States, uveal melanoma is an orphan disease that is biologically distinct from cutaneous melanoma. Treatment consists of surgery to remove the tumor or eye, as well as radiation therapy or chemotherapy. About half of cases metastasize, and survival for these patients is 9-12 months.

In this study, 98 patients with metastatic melanoma of the eye were randomly assigned to receive selumetinib or temozolomide (Temodar), with 48 receiving selumetinib and 50 receiving temozolomide. Based on imaging studies using RECIST (Response Evaluation Criteria in Solid Tumors), patients whose disease worsened on temozolomide were permitted to cross over to selumetinib.

Looking at the response patterns, tumors regressed in 11% (RECIST response, 0%) of 46 evaluable patients in the temozolomide arm and in 50% (RECIST response, 15%) of 46 evaluable patients in the selumetinib arm, for a highly significant hazard ratio of 0.46, reported Dr. Carvajal of Memorial Sloan-Kettering Cancer Center in New York.

Progression-free survival was improved to nearly 16 weeks for selumetinib as compared with 7 weeks for temozolomide. Overall survival was 10.8 months for selumetinib and 9.4 months with temozolomide.

More than 90% of patients in both arms of the study had metastatic liver disease and more than 50% had an elevated lactate dehydrogenase, Dr. Carvajal noted. Further, the study allowed for crossover to selumetinib by temozolomide-treated patients with no evidence of response at 4 weeks; 80% of patients in the temozolomide arm crossed over to selumetinib.

Selumetinib blocks the MEK protein, a key component of the MAPK pathway, which is activated by Gnaq and Gna11 gene mutations, found in 84% of the uveal melanoma patients in the study. Selumetinib also is being investigated for the treatment of cancers of the thyroid and lung, and trials are underway with selumetinib in combination with other drugs.

Dr. Carvajal noted that another MEK inhibitor, trametinib (Mekinist, GlaxoSmithKline), recently became the first MEK inhibitor to be approved by the Food and Drug Administration. Trametinib was approved in May 2013 as a single-agent oral treatment for unresectable or metastatic melanoma in adult patients with BRAF V600E or V600K mutations.

AstraZeneca is developing selumetinib under a licensing agreement with Array Biopharma.

The selumetinib study was supported in part by a Conquer Cancer Foundation of ASCO Career Development Award, the National Institutes of Health, Cycle for Survival, and the Fund for Ophthalmic Knowledge. Dr. Carvajal had no relevant financial disclosures.



News June 02, 2013

Nivolumab Activity is Durable in Advanced Melanoma

IMNG Medical Media,  2013 Jun 02 , MJ Dales

Dr. Mario Sznol

CHICAGO – Nivolumab, an investigational PD-1 inhibitor, shrank tumors by at least 30% in 33 of 107 pretreated patients with metastatic melanoma, based on results from an expanded phase I trial reported at the annual meeting of the American Society of Clinical Oncology.

An additional 11% of patients had prolonged stable disease or non-conventional, immune-related response profiles.

The findings build on favorable initial results reported at last year’s annual meeting for nivolumab in melanoma, renal cell carcinoma, and nonsmall cell lung cancer. The latest results in melanoma patients at follow-ups as long as 2 years indicate no new safety signals with nivolumab, which was associated with a 21% rate of grade 3-4 events. The rate of severe immune-related adverse events was 5%, and there were no cases of grade 3 or higher pneumonitis.

Median overall survival was nearly 17 months with nivolumab, with a 2-year survival rate of 43%. Median overall survival with vemurafenib (Zelboraf) is 16 months and with ipilimumab (Yervoy) is 10 months, with 2-year survival rates of 24% to 33% with ipilimumab, according to Dr. Mario Sznol, who presented the results from the phase I trial.

“We’re very excited that there is potential for even more activity [with nivolumab] in combination with other drugs,” said Dr. Sznol, professor of medicine (medical oncology) at the Yale Cancer Center in New Haven, Conn.

Responses were seen at all five dose levels tested (0.1, 0.3, 1, 3, and 10 mg/kg), with a 41% objective response rate at the 3 mg/kg dose, which has been selected for evaluation in phase III studies.

Median overall survival across all doses of nivolumab was 16.8 months. It reached 20.3 months for the 3 mg/kg dose. The 1-year survival rate was 62% and the 2-year survival rate, 43%.

Patients in the nivolumab trial were representative of typical patients with advanced melanoma, Dr. Sznol said. All patients in the study had disease that worsened despite prior standard systemic therapies, 25% of them had three or more prior therapies and 63% had two or more prior therapies.

All had ECOG performance standards of 0 or 1. Patients received up to 12 cycles of treatment, with four doses of nivolumab per cycle, until discontinuation criteria were met.

Response has persisted after stopping treatment in 17 of 33 patients, with 12 of the 17 continuing to respond for at least 4 months, Dr. Sznol said.

The overall objective response rate included partial and complete responses. Dr. Sznol acknowledged that just one patient had a verified complete response to nivolumab and four others had near complete responses at 2 years. Historical response rates to immunotherapy drugs are 5%-10% in advanced melanoma, he noted, which is lower than the 30% response seen in these pretreated patients.

“I have seen a few relapses after 2 years of response, but some patients continue to do well at 4 years. One patient who has been off nivolumab for 2 years continues to do well at over 4 years,” Dr. Sznol commented during a question and answer session.

To define the best candidates for nivolumab, molecular markers need to be identified to predict probable response, he added. As nivolumab is a PD-1 inhibitor, one potential marker is the protein PD-L1 on the surface of tumor cells, which is being studied in several other clinical trials.

The research was supported by Bristol-Myers Squibb. Dr. Sznol disclosed that he serves in a consultant or advisory role with Bristol-Myers Squibb.




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Alanamaranto22's picture
Replies 32
Last reply 6/16/2015 - 11:37pm

Well, we drove a little over three hours (one way) to see the surgeon/on his cologist for my first consult hoping for some answers. I didn't really get any new information other than his main concern was my mitotic rate. He also discussed what he plans to do as far as surgery. While I liked his positive attitude, surgery is going to be three plus weeks out. If his concern was the amount of cancer cells from the pathology report and how rapidly the cells are dividing I don't understand why he's waiting so long for the surgery. When I asked this question he replied, "if I prioritized all my cancer patients, I would be working seven days a week." In addition he said that he has seem patients much better than me and he's seen patients worse than me. While he realized my concern with this, he then said, "If you want to know if you'll be here this Christmas- the answer is yes." I just felt that it was kind of a wasted eight hour trip because he couldn't provide me with any information that I didn't already know. He doesn't have all of the information he needs to know how serious it is yet.

Again, his positive attitude made me feel better but I'm not happy putting this surgery off for three to four weeks, while in the meantime the cancer cells continue to divide and invade my lymphovascular system. He said the probability is high that is has at least reached the nodes behind my knee due to the mitotic rate but he won't know anything until he gets in there and does the surgery. He did however order a PET/CT Scan which should tell alot. I'm just wondering if I should seek a melanoma specialist for a second opinion. I believe his main focus is plastic surgery, then oncology and he's a licensed dentist. I have no doubts that he's very knowledgeable and good but this is my life hanging in the balance and I think I would feel better seeing a doctor who just specializes in melanoma.

He did say it is treatable but he just doesn't have the information he needs to know if and where it has spread. Am I just being paranoid and overactive or should I try and seek a melanoma specialist. My biggest thing is- if he's so worried and concerned about the mitotic rate then why wait so long for surgery? I just don't understand that. I decided to call him after I left to again ask if three plus weeks of waiting for surgery is going to affect me, her said, "No, not really. You've had this for over two years now, waiting now isn't going to make much of a difference." I know its my fault for not getting it checked sooner, but I didn't know it was cancer. I honestly thought it was a mole. I always thought cancer was black or brown patches.

I have three main characteristics of this thing fighting against me that are of main concern to him: thickness, ulceration and mitotic rate. But he did say it was treatable. Any input would be greatly appreciated.


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Melissag0624's picture
Replies 14
Last reply 6/13/2013 - 3:19pm

Just wanted to see how many stage 3A--ers have gone through or are considering Interferon. 




 Melissa G

<3 Melissa

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Anonymous's picture
Replies 1
Last reply 6/5/2013 - 4:32pm
Replies by: Tim--MRF

Hi Tim,


Thank you so much for keeping us updated  at Asco.


The news regarding anti-PD1 for BMS & Merck was very encouraging.


Based on input at Asco & your many years with MRF, what is your best guess when you think that FDA will realistically approve anti-PD1. If you were a betting man, which pharaceutical company do you think will get approval first?


Thanks for helping all of us.



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Just wanted to let you know I enjoyed meeting you on Sunday at the Atlanta Braves game area! I hope lots of people joined the MRF mailing list. Please let me know if there are any other events in the Atlanta area, and if you need a volunteer or two.


Work hard, but play harder.

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Tina D's picture
Replies 7
Last reply 6/12/2013 - 11:41pm

Hi all,

It has been a while since I updated, I had to postpone my scans by 2 weeks due to my husband needing surgery. My PET shows no new areas, so for that we are incredibly grateful. But, the tumors that had initially begun to shrink fafter ipi, have begun growing again :-( . SO... My Dr is running a PD1 trial, I may get into that, or there may be other options. He is at ASCO & will be in touch tomorrow with all possible scenarios for treatment that he thinks appropriate at this point. This was incredibly disappointing, but, as always, my days belong to the Lord, and we continue to trust Him. I am down to 5 mg prednisone daily ( for the pituitary inflammation from ipi) and doing well on that. Big decisions to make over the next days, and I will try to post an update as we decide what to do next.

For now... One day at a time....

Tina D

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Tim--MRF's picture
Replies 4
Last reply 6/4/2013 - 7:20pm
Replies by: LibbyinVA, Anonymous, POW, Tina D

Another ASCO has wrapped up, and it was a great meeting for melanoma.  I have reported on some of the earlier findings, but want to say a word about another drug.

We have heard a lot about anti-PD1, and both Merck and BMS have drugs that are very promising.  Some companies, including Genentech, are working on anti PD-L-1.  This is the counterpart to PD-1.  T-cells express PD-1 and when tumor cells have PD-L-1 the two compounds connect.  This connection turns off the T-cells and prevents the immune system from attacking the tumor.  The PD-1 drugs shut down the receptor on the T-cell.  The PD-L-1 drugs shut down the receptor on the tumor.

PD-L-1 also interacts with a second control mechanism on T-cells called B,1,7.  By blocking PD-L-1 you turn off two different braking mechanisms in the T-cell.  Early studies in multiple tumors show positive responses and very few side effects.  Genentech is trying to decide what the next step is, and what cancers to use in subsequent trials.  Since 40% of melanomas have PD-L-1 let's hope they choose to pursue melanoma as an area for further study!

I also met with people from Caris, a company that does genetic profiling of tumors.  The idea is to determine what mutations are driving the tumor and come up with a treatment plan based on those mutations.  This is the promise of personalized medicine.  A lot remains to be done, but they have had some real wins with this approach.


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POW's picture
Replies 0

Marie just posted a very encouraging update about Dian on the "Off Topic" forum. Check it out!

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I am stage IV and close to NED on the GSK BRAF/MEK trial for 30 months. Had a spot on my chest and they biopsied it as melanoma, not just an atypical nevus. Now they will get out the ice cream scooper scapel and carve it out to check on its depth etc. I guess this combo doesn't stop a new growth but it sure kicks hell out of the tumors when they can get at them. Do I have this right?

The history of the world is the battle between superstition and intelligence.

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flvermonter's picture
Replies 6
Last reply 6/4/2013 - 7:20pm

Hi, I am on again and stressed but on the computer.  Don't want my husband to feel my stress on top of his own.   We go down to Tampa for Dr Zager removing the rest of the lymph nodes on his right side.  We were told 2 - 3 days in the hospital, with first night in icu.  Will have a drain for 4-6 weeks, and lung surgery on 6/20 with Dr Toloza at Moffit.  That surgery will result in about 5 days in the hospital.


One good thing is his stress test last week was ok and the cardiologist gave his permission for the surgeries.  I guess I am just worrying about what will be next.  He feels fine physically so no symptons.  I have questions about after the surgeries.  Will he had radiation for the melanoma and the lung cancer?  Both doctors mentioned probably radiation treatment.  Not sure how that works other than I hear 5 days a week for 6 weeks.

None of the doctors said any more about the spot on his liver and as I read the doctors notes (THorasic and Melanoma), it states how all the tumors are growing, since the pet scan.  I guess I am looking to relieve stress typing on the board here and it does help.  Bottom line, I am just scared.

Thanks, Mary

Hugs to all, patients and care givers.

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