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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You asked what my oncologists plan was for future scans now I've reached 10 years NED. He's suggested PET/CTs every 18- 24 months from here on in. No other comments from him.

Sorry to take so long to reply....I've just worked 2 weeks non-stop and haven't had time to get to the board often.

Good luck....looking forward to seeing your husband post his 10 year NED early next year :)

Stage IIIB
NED since 2001

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LynnLuc's picture
Replies 11
Last reply 11/14/2011 - 1:52pm

There is serious talk that they will be using  10 Mg as the most likely standard. And reinduction is probably going to be used regualrly for previous responders...I am not a ipi person but thought it was a tidbit you might like. Also a patient who had 3 or 4 doses and then nothing else was still regressing at 38 weeks with no further ipi.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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I asked my doc a few questions about Anti PD 1 trials -where they at, are the comparable etc  and here is his response...There are three sets of PD-1 trials: the BMS drug, a new drug from Vuragen in Israel, and a newer antibody from Merck. The latter two trials are being done in multiple centers around the world. No way to compare the drugs, since almost all of the patients have received the BMS antibodies.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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LynnLuc's picture
Replies 1
Last reply 11/24/2011 - 11:32pm
Replies by: Anonymous

11/11/2011 from the 2011 International Melanoma Symposium in Tampa

Combining BRAF inhibitors and immunotherapy

Antoni Ribas, M.D. Stephen Mok, Nicholas Otte, Thinle Chodon, M.D.,Ph.D., Begonya Comin-Anduix, Ph.D., Richard C. Koya, M.D.,Ph.D Jonsson Comprehensive Cancer Center (JCCC) at UCLA, Los Angeles, CA.

Targeted therapies that specifically block oncogenic signaling in cancer without affecting the functions of lymphocytes may be used as immune sensitizing agents to improve the antitumor activity of cancer immunotherapy (Begley and Ribas Clinical Can Res 2008). This premise of immune sensitization could be achieved by combining BRAF inhibitors and immunotherapy. The compatibility of such combination approach requires that BRAF inhibitors do not have detrimental effects against the function of antitumor lymphocytes at therapeutic doses. When tested at a wide range of concentrations of the BRAF inhibitor vemurafenib (PLX 4032) using the in vitro human T cell cultures (Comin-Anduix, Chodon, Clinical Res 2010). We then developed a BRAF V600E – driven murine melanoma model to test this combination in fully synergic and immunocompetent C57BL/6 mice. The murine melanoma line SM1 is a spontaneously arising melanoma in transgenic mice with the BRAF V600E mutation under the tyrosinase promoter. SM1 cells exposed to vemurafenib had partial in vitro and in vivo sensitivity resulting from the inhibition of of MAPK pathway signaling, while murine lymphocytes were spared. Combined  treatment of vemurafenib plus adoptive cell transfer (ACT) therapy with lymphocytes genetically modified with a T cell receptor (TCR) recognizing chicken ovalbumin (OVA) expressed by  expressed by SM1-OVA tumors, or pmel-1 TCR transgenic lymphocytes recognizing gp100 endogenously expressed by SM1, resulted in superior antitumor responses compared to either therapy alone. Analysis of adoptively transferred T cells in spleen and tumor biopsies, and molecular imaging-based in vivo T cell tracking, demonstrated that vemurafenib did not significantly alter the expansion, distribution or tumor accumulation of the adoptively transferred T cells. However there was evidence of increased T cell activation in tumor infiltrating lymphocytes (TILS) upon antigen recognition. In conclusion, these studies support the clinical testing of combined oncogenic BRAF inhibitor and immunotherapy for BRAF V600E mutant metastatic melanoma.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Tim--MRF's picture
Replies 1
Last reply 11/12/2011 - 4:15pm
Replies by: Lisa13

I was at the annual meeting of the Society for Melanoma Research and had lunch with Annette Cyr from the Melanoma Network of Canada.

Annette mentioned that the governing body in Canada that approves funding for cancer drugs is considering whether or not co cover Yervoy.  MNC is conducting a survey of patients with the purpose of using that survey to provide information to that governing body.

If you live in Canada and have been impacted by melanoma, please consider participating in this survey or otherwise getting involved in this issue.  

You may access the survey here:

The web site for the governing body is here:

I have no information about the inclination of Canada to cover Yervoy, but as you may know, the British Health Service has declined to cover this drug.

Happy to answer any questions, to the extent that I can.




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Rick from NC's picture
Replies 14
Last reply 11/17/2011 - 7:56am

I have just reached the 20th anniversary of my diagnosis of melanona, which was Stage IV at diagnosis, with metastases to both lungs and various subcutaneous sites.  I was very fortunate to be referred to NIH where I had a complete response to IL-2 in 1992.  After several years of worrying about a recurrence, I now don't really think about recurrence.  It was a great pleasure to meet some of you at a melanoma conference in Chapel Hill, NC a couple of years ago.

I continue to read the posts on this site with great sympathy, and occasionally contribute.  I just wanted to offer myself as an example that people can have positive outcomes from even what appears to be a dire consequence.  I don't know why I did well when others don't, but I am very grateful.  My wish for my fellow warriors is for healing, in whatever way that comes, whether physical, emotional, or spritual.



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Gene_S's picture
Replies 9
Last reply 11/14/2011 - 9:00am

Gene had his 36 week scans and we got the great results of over 63% regression with some lesions being totally gone.  He is on the maintenance phase of the Ipi and gets infusions every 12 weeks after the initial 4 infusions  while taking the GMCSF self injections for 14 days then 7 off the entire time.

Here's to hoping for NED sometime in the near future.

In November 2010 he was diagnosed Stage IV and things were looking pretty bleak and now we can see the light at the end of the tunnel.

Here's hoping this helps someone else see the glimmer of hope with this drug and that it will give others hope in there medications as well.  I hope the other warriors of this disease can continue to fight and beat it.

Judy (loving wife and caregiver of Gene)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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beccia1's picture
Replies 3
Last reply 11/13/2011 - 2:57am

the genetic testing indicated that i have the c-kit mutation for exon 11


i was wondewring what tuype of drug is prescribed for that mutation

john b

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beccia1's picture
Replies 1
Last reply 11/12/2011 - 9:22am
Replies by: Anonymous

the genetic testing indicated that i have the c-kit mutation for exon 11


i was wondewring what tuype of drug is prescribed for that mutation

john b

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wouldn't this be great if the perfected it to work on us!


NIH researchers design a light therapy that targets and destroys cancer cells in mice:
NCI Press Release

Researchers have designed a light-based therapy that allows the selective destruction of tumor cells in mice without harming surrounding normal tissue. This method of cancer therapy could theoretically work against tumors in humans, such as those of the breast, lung, prostate, as well as cancer cells in the blood such as leukemias, say scientists from the National Cancer Institute (NCI), part of NIH. The study appeared online Nov. 06, 2011, in Nature Medicine.

Current photodynamic therapy is not specific for cancer cells, resulting in damage to surrounding normal tissue. Therefore, the researchers in this study set out to develop a light therapy that could more accurately target cancer cells while sparing a greater number of normal cells.

Image of a mouse with two implanted tumors (circles) that received the photoimmunotherapy (PIT) agent. One tumor was covered (white circle) but the other tumor (yellow circle) received a short course of harmless near infrared light. One day after exposure to the light, the treated tumor is dramatically smaller than the covered tumor demonstrating the effectiveness of PIT.This new type of treatment, called photoimmunotherapy, or PIT, uses light to rapidly and selectively kill cancer cells. To create their PIT, the scientists coupled a monoclonal antibody or MAb, which recognizes specific proteins on the surface of cancer cells, with a photosensitizer—a molecule that, when exposed to light of the appropriate wavelength (near-infrared), rapidly damages cells. The hope was that the combined photosensitizer/MAb would, by delivering the photosensitizer to cancer cells targeted by the MAb, selectively kill those cells after exposure to near-infrared light.

After evaluating a large number of photosensitizers, the scientists found that a near infrared fluorescent dye called IR700 had the most favorable chemical properties.

The scientists chemically linked IR700 to three different MAbs, including antibodies that target HER2, which is overexpressed by some breast cancers; EGFR, which is overexpressed by some lung, pancreatic, and colon cancers; and PSMA, which is overexpressed by prostate cancers. The researchers found that when cancer cells bound MAb-IR700 and were exposed to near-infrared light, the targeted cells rapidly died whereas cells lacking the ability to bind the complex were unharmed. When the complex was tried in mouse models of cancer, even a single dose of near-infrared light resulted in dramatic tumor shrinkage in mice that had been given MAb-IR700. Like visible light, infrared light has a range of wavelengths that range from red light to violet; near-infrared light is closest in wavelength to visible light.

Photoimmunotherapy using MAb-IR700, unlike conventional photosensitizers which can cause damage to healthy tissue, does not appear to harm normal cells. Whereas the light that is required to activate conventional photosensitizers can penetrate through only about 0.8 centimeters of tissue (about a third of an inch), the near-infrared light used to activate IR700 can penetrate tissue to a depth of several centimeters (One centimeter is .39 inch).

The study also found antibody doses required for diagnosis were significantly lower than those required for therapy. Nevertheless, after MAb-IR700 exposure, the targeted tumors decreased in size and eventually disappeared, suggesting a potential means of controlling cancers with far lower doses of MAb than are usually administered to cancer patients, say the scientists. Because the MAb-IR700 compound also emits a small amount of light, it can be used to monitor therapy as well.

“The ability to join different MAbs to IR700 means that this technique might be used as a non-invasive guide to monitor the results of treatments,” said Hisataka Kobayashi, M.D., Ph.D., chief scientist in the Molecular Imaging Program at NCI’s Center for Cancer Research. “Although more testing will be needed, we believe this PIT method has the potential to replace some surgical, radiation, and chemotherapy treatments.”


# # #


Reference: M Mitsunaga et al. Cancer cell-selective in vivo near infrared photoimmunotherapy targeting specific membrane molecules. Online Nature Medicine, Nov. 06, 2011, DOI: 10.1038/nm.2554.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Another abstract to be presented on Saturday Nov 12, 2011 by  Sanjiv S. Agarwala MD  Professor of Medicine, Temple University School of Medicine, Chief, Oncology and hematology, St Luke’s Cancer Center, Bethlehem, PA

Adjuvant Therapy of Melanoma Overview

One of the main issues confronting clinicians who treat patients with high-risk melanoma after surgical resection is the use of adjuvant therapy to prevent reoccurrence and improve survival. After decades of research, the only agent that has consistently shown an impact in improving relapse free survival (RFS) and less consistently on overall survival (OS) is interferon-alpha. The regimen most commonly used in the US is the high dose interferon (IFN) regimen (HDI) of induction therapy given at 20 MU/m2/day for 5/7 days/week for 4 weeks intravenously followed by maintenance of 10 MU/m2/day tiw for 48 weeks subcutaneously.

Two important issues that have recently been researched are (1) the use of induction therapy only or (2) the use of prolonged lower dose therapy with a longer acting pegylated (PEG) IFN.  The former issue was recently clarified with the results of E 1697, a trial that randomized patients with intermediate and high-risk melanoma to induction therapy for 4 weeks only or observation. No significant difference between the treatment and observation arms were noted in 1111 patients randomized indicating that induction therapy alone was inadequate. The latter issue was addressed by EORTC trial 18991 which randomized 1256 patients with node positive melanoma to 5 years of PEG IFN administered weekly ( 6 ug/kg/week for 8 weeks followed by 3 ug/kg/week) or observation. A statistically significant improvement in RFS was noted for the treated patients. Based on these results, the FDA approved PEG-IFN for surgically cured patients with stage III melanoma in 2011.

Clinicians and patients now have a choice of IFN regimens for stage III disease, with HDI still standard for IIB and IIC disease. Ongoing and future trials addressing the potential value of newly approved agents in stage IV melanoma such as ipilimumab and vemurafenib will be an important to move this field forward.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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LynnLuc's picture
Replies 4
Last reply 11/14/2011 - 6:47pm
Replies by: JerryfromFauq, LynnLuc, Anonymous

This is one of those abstracts I picked up today from the 2011 International Melanoma Symposium. I hate to type so I will put only one up tonight.


 It will be presented Saturday Nov 12, 2011 by Paul B Chapman from Sloan-Kettering.


The future of adjuvant therapy for melanoma


"Prior to 2011, treatment options for patients with metastatic melanoma were limited to single agents that had objective response rates ≤15% and complete response rates <5%. Such drugs would be expected to have a very limited efficacy in the adjuvant setting. Indeed, high does interferon-α, the only drug studied extensively in the adjuvant setting for melanoma, has shown only minimal ability to prolong progression-free survival with no detectable effect on overall survival.  Combinations of chemotherapy have been shown to have higher response rates than single agents in metastatic melanoma patients, but in contrast to other malignancies such as colon and breast carcinoma, these combinations have not been tested in the adjuvant settings of melanoma.


The treatment landscape has changed dramatically for melanoma with the approval of ipilimumab and vemurafenib. Both drugs improve overall survival. The objective response rate to ipilimumab however is still around 15% while vemurafenib is associated with an objective response rate of approximately 50%. However, both drugs are prime candidates to be tested in the adjuvant setting. A large double-blind, placebo-controlled randomized adjuvant trail of ipilimumab has completed accrual and we await the results. Vemurafenib should also be tested in the adjuvant setting in a large double-blind, placebo-controlled trial with overall survival being the primary endpoint. Since both drugs are FDA-approved, patients randomized to placebo will likely receive, upon relapse, the drug being tested. This is appropriate and in no way diminishes the value of the adjuvant trial. The real question being asked is whether giving the drug to micrometastatic (i.e. adjuvant) setting is ultimately more likely to cure patients or at least improve survival significantly than treating of detectable disease. If the answer is yes, we should be treating patients in the adjuvant setting. If the answer is no, then the value of treating all patients in the adjuvant setting is less clear.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Jewel's picture
Replies 10
Last reply 11/12/2011 - 6:49pm

Hi Everyone,

It has been one heck of a year for my husband and I.....Nov 2010 found out he had Melanoma.....July 2011 (3) Local recurrances on calf AFTER hip surgery!!! September 2011 ANOTHER WLE and Complete Lymph Node dissection in groin out of 19 nodes 2 macro 1 micro positive. We will be going to Sloan on the 18th for a second opinion and just would like to hear abour your experiences with them. We are coming from the Adirondacks which is a 5 hr drive so it should be interesting. NO EXPERIENCE with the city whatsoever so if you have any "pointers" please let us know. Just would like to hear what all of you have to say.


Thanks for all of your knowledge!!!!



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NancyGM's picture
Replies 14
Last reply 11/13/2011 - 8:47am

I don't post often, but still feel very connected to this community. My latest PET confirms that I have been clear since I finished my last round of Temodar for a pulmonary met in December 2007. I feel beyond lucky and my heart goes out to everyone dealing with any stage of this disease!


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Lisa13's picture
Replies 8
Last reply 11/12/2011 - 6:17pm

Since finding out I had brain mets a week ago today, I've had some rough days, but now I'm back to hopeful and not giving up.   I also truly believe that if you continue to worry and think the worst, then your attitude and body give up. 

I have the most amazing team ever.  When I first decided against WBR, the neurologist and radiologist both emailed me on Sunday and said "Let's get together on Monday to talk about this more". What Dr. would call on his day off???  I also emailed my radiologist this morning telling him about a small pain I had in my head. He emailed me back 10 minutes later with some questions and found out it "had nothing to do with the small lumps in my head".  Truly amazing how quickly these people get back to you.  They're even hoping that since I've so far had great success with ipi, that it will do it's job of keeping more of anything coming around for awhile.  

All I know is no matter how bad things seem sometimes, these people are doing everything they can and as quickly as they can, to get things done.  This attitude from all these medical Dr's makes me feel like they really care and I think that's hard to come by at times.


Many impossible things have been accomplished for those who refuse to quit

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