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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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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deardad's picture
Replies 5
Last reply 11/12/2011 - 9:41am

Well I was a bit floored to say the least today. My dad as usual went for his scan results on his own (he wants this way).

According to his scan first month scan results (on paper) he had had a complete metabolic response and the oncologist told my dad (so he says - my dad does have hearing issues) that his tumors were not visible on scan.


Firstly we were confused that CMR was the same as CR - WRONG. He has had a partial response in that all the target leisons are shrinking and none are active on PET 30-70% shrinkage. We also find out that he has 2 nodules in a lung and in the subcutaneous part of the fat near the kidney. We never even knew these ones were there, but apparently they are not new since he started vermurfenib.

So....feeling like we've had a crash, when really the results are still positive. My dad just didn't ask the right questions and we were'nt there to ask them for him. There's so much one needs to learn medically in order to read between the lines of the oncologist.  

Im feeling quite stressed out and sad because my dad was pretty emotional about it all. He understands that the results are still good, but he naively believed that he had no tumors visible on scan. I seems like my dad's MM is very aggressive and I am worried that things will turn nasty quickly. In saying that we won't give up and probably just need to get our heads around this new information and celebrate that things could already be nasty.

What a day in life of this dreaded disease, and I hope I don't offend anyone with my winging, because I know there are many of you out there fighting a tougher battle than my dad at the moment.

Nahmi from Melbourne

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"Primary dermal melanoma is a distinct subtype of melanoma characterized by improved
patient survival and unique IHC findings ... compared with both cutaneous MM and PNM
(primary nodular melanoma), which it may simulate histologically."

The following article also mentions that:
"Since our initial report of PDM in 2004, we have continued to prospectively identify,
treat, and follow the largest cohort of patients with presumed PDM. Improved ability to
diagnosis PDM via IHC markers will help to avoid potential misdiagnosis as stage IV
cutaneous metastasis and result in optimal patient management and counseling regarding

See full article (free) at:

Best wishes

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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scots's picture
Replies 11
Last reply 12/1/2011 - 12:39am

just completed 11 months of ld interferon. it was not easy but I glad to be done.

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cwu's picture
Replies 9
Last reply 11/13/2011 - 4:37pm
Replies by: cwu, NYKaren, paul, lhaley

Has anyone used imiquimod (Aldara) for melanoma? Can you let me know where it was used, how it was used, side effects, why it was prescribed, effectiveness,etc? I am looking into this for my father for his in transit mets on his leg. I think there is a trial at UVA for this. 

Thank you, Chau.

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Karolina's picture
Replies 7
Last reply 11/12/2011 - 5:03am
Replies by: Karolina, Nicky, washoegal



can you advise what Desmoplastic melanoma is ,  what are treatments of it and potentially prognosis?


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Karolina's picture
Replies 3
Last reply 11/10/2011 - 2:10pm
Replies by: Karolina, Anonymous, Janner


Does anyone can give me some more info about  amelanotic melanoma? 



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jaredmiller16's picture
Replies 8
Last reply 11/11/2011 - 3:11am



Like many of you know, my mom died of melanoma. You would have thought with her diagnosis, I would have been better about staying out of the tanning beds (went there to hit on girl, soon to be wife, about twenty times)  and sun, but I was young, in college, and just flat out stupid. Now, I look at my kids and think, "gosh, I could die as a result of something stupid." The guilt is killing me.  Which is strage because I am leaving for a pretty brutal mission to Afghan soon. I know the risks associated with my job, but this kills me more. For whatever reason. Maybe its because of my mom. She had a lot of guilt too.


Am I the only one who feels this way? '


I talked to my doctor about it and she said a lot of smokers feel the same way after being diagnosed with lung cancer. Only difference is that skin cancer is one of the few that we can diagnois early (because its on the skin). But, again with my mom going from stage 1 to stage 4, it scares me and I think more. However, I apprecaite this board and their uplifiting views regarding my fear. My wife saw an instant change in my attitude one I signed on. I just am wondering if its normal to feel guilt like this.

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ezygoin686's picture
Replies 5
Last reply 12/23/2011 - 12:28am
Replies by: ezygoin686, erb, MichaelFL, eaca

I am a 65 year old male, married and I am on Peginterferon a/k/a Sylatron and have been since July 2011.  I am looking for someone that is going through this same treatment to talk to.  Hopefully, I can find a support group.  If not, I am willing to start one. 



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LibbyinVA's picture
Replies 10
Last reply 11/11/2011 - 4:14pm

Sorry, folks, but need to re-post my request from yesterday.  I received the following response to my suggestion that MRF be considered: 

"Do you know of anything that is a little smaller? They like to pick organizations where a $3,000-5,000 donation would make a big impact."

So, back to square one:  does anyone know of a not-for-profit (501C3) organization within 100 miles of the Washington, DC area that I can submit to a northern Virginia corporation interested in choosing their annual fund-raising recipient?  As stated above, it has to be much smaller than MRF and an hours drive from DC as they make the contribution in person.

Hopefully someone out there has their own small fund-raising group that fits the bill.  I have one here in Richmond, but am located too far from DC.

LibbyinVA (Stage IIIb, gratefully NED since 2006)

I have melanoma but melanoma does not have me!

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