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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csellers23's picture
Replies 6
Last reply 2/11/2015 - 4:25am

Got first dose of keytruda. Wanting to know what side effects you got, the more doses you got. Did they get worse, how long till you knew it was or wasnt working also im on taf pill. I had mixed results with the taf/mek combo so they took me off that . but put me back on taf after new met were found on the brain and keytruda,, and did anyones tumors get bigger before they got smaller. I am haveing pain all o ver even with pain meds, even the bottom of my feet hurt! Worse in morning and right after i take pain meds but i d i nt know if its from taf ir keytruda. Thank you sorry for typos my phone is acting up.


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arthurjedi007's picture
Replies 1
Last reply 2/10/2015 - 4:58am
Replies by: JustMeInCA

Sorry I didn't post this sooner. It sounded like if your dad gets a little better he might be well enough to travel.

If so it seems to be getting more difficult for us non naieve patients to have a decent trial. There is one in Oregon so some distance from San Francisco but if he's up to it might be worth it. It combines Opdivo pd1 with anti-lag-3. I've been trying to get into it in Chicago since November but my body has kept failing me but I'm still trying to get good enough for it.


Providence Portland Med Ctr
Portland, Oregon, United States, 97213
Contact: Rachel Sanborn, Site 0002    


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I need to get an elderly Lady in

Laguna Hills, CA in contact with someone that can help her get a referral from Kaiseer to A melanoma specialist at UCLA..  Her Kaiser Onc told her that she stands no chance of survival with mucosal melanoma and that Kaiser will not refer his patients to UCLA for opinions nor treatment.  This lady has not even had the WLE yet.



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

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kpcollins31's picture
Replies 2
Last reply 2/9/2015 - 11:13am
Replies by: Shelby - MRF, _Paul_

Does anyone here know an effective way to prevent these spammers from invading this forum? The latest is john243... I have marked most of these posts as spam, but am not sure what else to do.

It infuriates me that people would come to a site where people are in many cases fighting for their lives and then they get these promises of miracle cures - trying to take advantage of people grasping for a solution.



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First article I found back in 2007.  Still same mistake made by many Doctors!

Dig Dis Sci. 2007 Jul; 52(7): 1745–1747.
Published online 2007 Apr 6. doi:  10.1007/s10620-006-9485-6
PMCID: PMC1914244

Melanoma of the Anus Disguised as Hemorrhoids: Surgical Management Illustrated by a Case Report

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

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More info in this article than most that I've seen about vulvlar cancers. :


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

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Carrie102's picture
Replies 6
Last reply 2/10/2015 - 8:48am


I do not have Melanoma.. I have Merkel Cell Carcinoma. I am in a clinical trial with PDL-1. I am a complete responder. I am looking for people with Melanoma who have had a complete response to either PD-1 or PDL-1.. is there anyone on here who shares my similiar situation? I need advice, information, and answers...



Thank you


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buffcody's picture
Replies 4
Last reply 2/9/2015 - 4:58pm

This recent article in the New York Times should caution us all if we buy supplements to fight our cancers.  We may not be fighting cancer but our own health.

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vince1962's picture
Replies 7
Last reply 2/8/2015 - 10:58am

How long after surgery consult do you have surgery? what kind of time frame is in between the two 

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Anonymous's picture
Replies 1
Last reply 2/8/2015 - 6:36pm
Replies by: john243

After 3rd (next to last) infusion of Yervoy, my husbands twice recurred tumor under his armpit doubled in size in one week, (just removed surgically) and now a new lump on his collarbone with a probably melanoma filled lymph node there too. They are stopping Yervoy and giving him Zelboraf, since he can't tolerate Dabra anymore without high fevers. then he will have a bunch of cat scans next week and if more bad news (we're getting used to nothing but bad news, maybe anti-pd1.  Anyone here have success with Zelboraf after trying Dabra first?  We're nonreligious so I apprciate everyones good thoughts but we're not praying about this, we're desperately seeking some medicine that will work.  Anybody here have a history of Dabra then Zelboraf use? Why does everything come back and double in size in ONE WEEK? No ten year stage three for us - it looks like we are hurtling toward 4 with no luck.

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rick1981's picture
Replies 3
Last reply 2/7/2015 - 8:49am
Replies by: rick1981, RaquelP, tschmith

Treatment Paradigm in Advanced Melanoma Poised for Change… Again

By Caroline Helwick
January 25, 2015, Volume 6, Issue 1

The most potent biomarker we found was the presence of T cells in and just outside the tumor. But at this point, I am not going to stop treatment if I don’t see T cells, and I won’t stop if PD-L1 is not expressed.

—Caroline Robert, MD, PhD


Table 1. This an example of what a table would look like.

Table 1. This an example of what a figure would look like.

"Ota quiduciet re, eum hitas iditatibusam volupturia cus aut omnias alit as aliate nes dolest voluptati qui ut magnis et, odignit atemolum erio."
– John Smith, MD


In the treatment of advanced/metastatic melanoma, recent debate has focused on the choice of initial therapy: ipilimumab (Yervoy) or, for patients with BRAF-mutant cancer, a BRAF/MEK inhibitor. This issue is now taking a back seat to the emerging conversation about the positioning of antibodies that target programmed cell death protein-1 (PD-1) and its ligand, PD-L1.

At the 3rd Annual World Cutaneous Malignancies Congress in Los Angeles, melanoma researchers weighed in on this topic and made predictions for the future. Antoni Ribas, MD, PhD, Professor of Medicine, Surgery, and Molecular and Medical Pharmacology, and Director of the Tumor Immunology Program at the Jonsson Comprehensive Cancer Center at the University of California, Los Angeles, predicted that the current treatment algorithm for advanced/metastatic melanoma is poised for change.

Management of Cancer in the Anti–PD-1/PD-L1 Era

Today, patients are initially evaluated for BRAF status, burden of disease, and the growth kinetics of the tumor. Then they are offered BRAF/MEK inhibitors, the anti–CTLA-4 (anti-cytotoxic T-lymphocyte–associated protein 4) agent ipilimumab, or interleukin-2.

“However, this is not how we are going to treat melanoma in 2 years,” Dr. ­Ribas predicted. “We will be evaluating the interaction between the cancer cell and the immune system, and that will tell us what to do.”

The mechanism of action of the PD-1/PD-L1 blockers—which currently include nivolumab (Opdivo), pembrolizumab (Keytruda), MPDL3280A, MEDI4736, and MSB0010718C—may allow for the prediction of response. CD8-positive T cells observed in the tumor at baseline trigger the expression of PD-1 and PD-L1, and their interaction limits the response of the immune system and can be unblocked by anti–PD-1/PD-L1 agents.1

Caroline Robert, MD, PhD, Head of the Dermatology Unit at the Institut Gustave-Roussy in Paris, France, indicated she had collaborated with Dr. Ribas on this finding and noted, “The most potent biomarker we found was the presence of T cells in and just outside the tumor. But at this point, I am not going to stop treatment if I don’t see T cells, and I won’t stop if PD-L1 is not expressed.” Dr. Ribas added, “We need to learn more about this. It sounds complicated now, but this will become a simpler thing we can all detect.”

Only patients with this characteristic immune profile—demonstrating the presence of CD8, PD-1/PD-L1—will receive an anti–PD-1 or PD-L1 antibody up front. Other patients will most likely be treated with combinations or novel approaches, especially strategies that “can bring T cells into the tumor,” he said.

Dr. Robert agreed. “In an ideal world, we would biopsy the tumor, look for the biomarker, and be able to tell whether the levels are higher enough for a PD-1 blocker or whether the patient should get anti–CTLA-4 up front.”

Symptom Load May Still Matter

Axel Hauschild, MD, PhD, Head of the Skin Cancer Working Group at the University Hospital Schleswig-Holstein in Germany and Co-Chair of the Global Melanoma Task Force, agreed that the availability of anti–PD-1/PD-L1 antibodies will turn the current treatment algorithm on its head but maintains that symptomatic load will still be relevant.

He predicted that all symptomatic patients, regardless of BRAF status, will receive immunotherapy first—ipilimumab, alone or in combination with an anti–PD-1/PD-L1 antibody. BRAF status will become important when the disease progresses. Retreatment with combined immunotherapy or with BRAF inhibitors will also be part of the future algorithm, according to Dr. Hauschild. This strategy is not yet evidence-based and must prove its superiority to the selection of treatment by BRAF status, he added.

The future approach will be greatly informed by results of trials comparing BRAF/MEK inhibition followed by anti–PD-1/PD-L1 plus ipilimumab, vs the opposite strategy, and those evaluating the combination of anti–PD-1/PD-L1 plus ipilimumab.

Nivolumab Survival Data

Dr. Robert reviewed the encouraging findings for nivolumab that are contributing to the excitement over anti–PD-1/PD-L1 antibodies. In the phase III CA209-037 trial, response rates were 32% to nivolumab and 11% to dacarbazine, and overall survival, which she and her colleagues recently reported in The New England Journal of Medicine,2 was 72.9% at 1 year, vs 42.1%, representing a 58% reduction in mortality risk (P < .0001).

In contrast to ipilimumab, she said, “The drugs also have a very good risk/benefit ratio,” with most toxicity limited to immune-related side effects.

She agreed that the combination of the two immunotherapy classes is exciting and logical. The rationale for the combination is that CTLA-4 and PD-1 are nonredundant immune checkpoints in T-cell differentiation and function, and antitumor synergy has been demonstrated in animal models, she explained.

The phase I CA209-004 study evaluated several different dosing combinations and schedules for the two drugs.3 In the combined concurrent cohorts (which included maintenance nivolu­mab), overall survival at 1 year was 85%, and 2-year survival was 79%. In one of these individual cohorts, 1-year survival reached 94%, Dr. Robert reported.

Clinical activity was seen in patients with and without PD-L1 expression and regardless of BRAF status. In patients with residual ipilimumab in plasma, the response appeared to be enhanced, suggesting that “maybe we don’t need a lot of ipilimumab,” she added.

Toxicity May Be an Issue

The combination was, however, difficult to tolerate. In the dose-finding study, 64% of patients reported grade 3/4 events with the concurrent treatment, primarily gastrointestinal (14%) and hepatic (14%). Toxicity was much less with sequential treatment.

“These [side effects] occur early and are not trivial,” Dr. Robert noted. “We will need to see if the efficacy of this combination is worth the toxicity.”

She suggested that the viability of this combination “will depend on the results of the studies…. Maybe we will use the combination for patients with a good performance status. If the patient can overcome the toxicity and have a good response, of course it will be worth it.”

When asked what magnitude of benefit will justify the toxicity, Dr. Robert responded, “Survival of 80% without grade 5 adverse events.”

Dr. Hauschild indicated the gamble may be worth it for many patients. “Why not argue that if the combination shows a strong overall survival improvement, vs the single agent, toxicity doesn’t much matter, if the patient just needs four infusions to get the job done. You could go ahead with a single agent and get a median survival time of 20 months or go with the combination and get 30 months. It’s a dramatic difference.” ■

Disclosure: Dr. Robert has been a consultant for BMS, MSD, GSK, Roche, Amgen, and Novartis. Drs. Ribas and Hauschild reported no potential conflicts of interest.


1. Tumeh PC, et al: Nature 515:568-571, 2014.

2. Robert C, et al: N Engl J Med. November 16, 2014 (early release online).

2. Kluger H, et al: 2014 ESMO Congress. Abstract 10850. Presented September 27, 2014.


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Josh's picture
Replies 5
Last reply 2/17/2015 - 12:11pm
Replies by: Anonymous, john243, Mat, kpcollins31

Hello All,

So I've recently become one of the unfortunate few who get perhaps the ickiest Yervoy side effect: colitis. Without going into too much detail, I've essentially been pooping blood for a month straight and have lost 20 pounds (I started at 150 pounds, so this is a lot to lose). I've had 3 doses of Remicade (infliximab), and am currently at 50 mgs of prednisone (down from 80mgs), and 9mgs of Budesonide. Haven't had a dose of Yervoy in over 6 weeks. Has anyone else experienced this, or does anyone have any advice as to how to stop spending my days and nights in the bathroom. It's kinda cold in there and one can only watch YouTube food videos in a cold bathroom on an iPhone for so long :-)


Thanks a lot!



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yazziemac's picture
Replies 6
Last reply 2/9/2015 - 8:06am


My husband, Pete, has Stage 4 melanoma but has been NED since a craniotomy and gamma knife radiation late last year.  His oncologist has suggested a PET scan to monitor him and we're unfamiliar with this process.  Could someone please tell me what is the general process is if something lights up in the PET scan?  Is the next step generally a biopsy?  I would just like to know what to expect.  Thanks in advance,


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buffcody's picture
Replies 4
Last reply 2/8/2015 - 6:39pm

I just got a detailed endoscopic procedure yesterday to answer the mystery of a growth/lesion that has been getting bigger over the last few months in the area of the pancreas and duodenum. The experienced doctor who did the scope reported after the procedure that it was located in the duodenum and was metastatic melanoma.  My first metastatic diagnois was in early 2012.  Since then, I have had brain radiation and a lung lobectomy as well as two craniotomies.  The new metastasis is the only sign of cancer in my body now.  I will be meeting with my oncologist about this soon, but I am interested in hearing from anyone who has had metastasis to the duodenum and what the treatment has been.  I have not yet had anti-PD 1.  Based on the pre-scope conversation with my oncologist, I presume he will be recommending a course of Keytruda.  He also wanted to explore surgery, but the gastroenterologist wsa pessimistic about that course for a variety of reasons foremost probably my age, though I do have excellent performance status.  Thank you.



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Jacqueh27's picture
Replies 21
Last reply 2/8/2015 - 6:41pm

I am so encouraged. First, the LDH sure  was a good marker that her liver tumor burden was lessening. First four week scan shows a huge hole in tumor and is down by 4cm. She is totally out of pain and it has not spread to any other organs, not even brain. She will have Pet scan done in 9 weeks to see what's left and we will discuss surgery. They aren't even talking any other meds now! I'm so encouraged and am so happy I found this support forum. 

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