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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I haven't found how to download it yet, but it can be viewed in sections on line or ordered telephonically.  Sections can be downloaded by veiwing and then "Saving AS" from the file menu.

Single give away printed copies of CancerResource can be performed by job AICR during 1-800-843-8114, Monday by Friday, 9:00 AM to 5:00 PM Eastern Standard Time.


CancerResource: Living With Cancer

The not-for-profit American Institute for Cancer Research (AICR), noted for its investigation of links between lifestyle and cancer and now in its 30th year, has released a free digital book for cancer patients and survivors, with current, evidence-based advice on managing diet and activity during and after treatment.

The 44-page book, called “CancerResource: Living With Cancer” represents “a completely retooled version of the free information kit that AICR has offered newly diagnosed cancer patients and their families for decades,” the AICR noted in a news release. It’s expected to be especially valuable because it “focuses on the questions that patients tell us they have a hard time finding answers to,” said Alice Bender, a registered dietitian with the AICR. “There’s been a lot of new research on diet and exercise during treatment in the past few years, for example, and CancerResource translates those encouraging findings into useful tips.”

CancerResource begins with an introduction on how to use the guide, and includes these sections:

● During Treatment: Healthy Eating
● During Treatment: Getting and Staying Active
● After Treatment: Healthy Eating
● After Treatment: Getting and Staying Active
● Cancer and Its Treatment: General Information

Its content includes:

● Tips on understanding the diagnosis and finding a healthcare team
● Worksheets with questions patients should ask their healthcare providers about their diagnosis and its treatment
● Ways to use good nutrition and physical activity to help make treatment more tolerable
● How to cope with diet-related side effects and stay active during and after treatment
● Answers to “hot topics” questions about dietary and phytochemical supplements (eg, soy), macrobiotic and vegetarian diets, dietary fiber, and more
● Common cancer terms (in a glossary)
● Useful resources for patients (information about, and links for, the AICR, the National Cancer Institute, American Cancer Society, Healthfinder, MEDLINEplus, and OncoLink)

Besides the main CancerResource book, there are also CancerResource programs focusing on breast, lung, colon, and prostate cancer.

Single giveaway printed copies of CancerResource can be performed by job AICR during 1-800-843-8114, Monday by Friday, 9:00 AM to 5:00 PM Eastern Standard Time.

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

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NYKaren's picture
Replies 7
Last reply 10/3/2012 - 9:25pm

Hi everyone.


 I just came from Dr. Wolchok's office, where I was expecting to be put on a stronger regimin of chemo.

Several months ago, I had mentioned DPCP to him, which someone here on the board had suggested to me.  (Frank, Jimmy??)

He and my onc. derm, Dr. Halpern, have been frustrated because they couldn't find anyone here to compound it.  Turns out, it's been on his mind all these months, and he had just (as in earlier today) met a reseacher from Rockafeller University (research university, Dr. Leves, who uses this compound.   I just spoke with him, and he told me that "I'm just what they're looking for!"  Imagine that!  So I'm waiting for the nurse coordinator to call me to set up a screening. 

I'm beyond shocked that this has been on Dr. W's mind for all these months...that's just the kind of guy he is.

Could it be that maybe, just maybe, this would work?  Stay tuned.


Don't Stop Believing

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The trial will randomize half the patients to the combo.  The other half will get only the BRAF inhibitor.  I have been on a Phase I/II trial of these two drugs for almost a year-and-a-half (getting both drugs), and have done very well.  Also, very good interim results were reported at the last ASCO conference. I think that anyone who can qualify should seriously consider this trial.

Best wishes,


Too ugly to die!

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SharonAust's picture
Replies 4
Last reply 10/3/2012 - 8:29am

Hello from Sydney Australia,

My friend has Stage IV unresectable melanoma (still confined to lymph). She has been on vemurafenib (Zelboraf) and had an unusually bad experience with side effects. She's been offered a place on trial of E7080, but is nervous to go on another clinical trial.

Any info on side effects from E7080, especially compared to Zelboraf?

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Erinmay22's picture
Replies 15
Last reply 10/3/2012 - 8:05am

Ok - I know this has been discussed some before.   I am set Oct 4th to have surgery done on my small intestine to remove a section that has been showing up on my scans since May as significantly inflammed bowel.  I tried Zelboraf since May.  July scans showed some shrinkage but Sept scans showed it 's back to the same size as it was in May.  

Was given an option to start Ipi and see what happens (since not having many symptoms) but I prefer to just have it cut out!  Can anyone give some details on what it's like, what to expect, etc? 


Erin "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Julie in SoCal's picture
Replies 3
Last reply 10/2/2012 - 9:29pm
Replies by: gabsound, Anonymous, aldakota22

Hi there Friends,

I just wanted to post and say hey and that I'm entering my 5th year of NED.  Celebrate with me!

4 years ago when I was dx'd I was just starting my PhD and after dx I thought I would never finish.  Mel kicked me upside the head bad (and I think I went stupid for a year or so- it took me one year to finish a class).  But my school was fantastic to work with and let me finish things on my own schedule. Now my finishing worries are different as I still have to finish my dissertation, write comps, and pass my defense.  It's a good place to be. 

This is also a good place to be.  Thanks friends and MRF for keeping the MPIP board up to date and both an encouraging and informative place.




Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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PV-10. Has anyone heard of this stuff? What is it?

KNOXVILLE, Tenn.--(BUSINESS WIRE)-- Provectus Pharmaceuticals, Inc. (OTC BB: PVCT,, a development-stage oncology and dermatology biopharmaceutical company, announced that final top-line data from its Phase 2 clinical trial of PV-10 for metastatic melanoma were presented at the ESMO (European Society for Medical Oncology) 2012 Congress in Vienna, Austria on October 1, 2012. The data were presented in Poster Presentation III, Abstract #1137P, "Immuno-chemoablation of metastatic melanoma with intralesional rose bengal." The poster was presented by Dr. Sanjiv Agarwala, M.D., Principal Investigator for the Phase 2 trial of PV-10, and Chief of Medical Oncology and Hematology at St. Luke's Hospital and Health Network in Bethlehem, PA. The poster was authored by Dr. Agarwala along with co-authors J.F. Thompson, B.M. Smithers, M. Ross, B.J. Coventry, D.R. Minor, C.R. Scoggins and E. Wachter.

  • An Objective Response Rate (OR) of 51% in subjects' target lesions (25% Complete Response and 26% Partial Response);
  • 69% disease control in these lesions (combined Complete, Partial and Stable Response subjects);
  • 33% of subjects having an untreated bystander melanoma lesion achieved an OR in their bystander lesions while 50% achieved disease control in these lesions;
  • Response of bystander lesions was highly correlated with outcome in treated target lesions, with a bystander lesion OR of 61% in subjects achieving complete or partial response in their target lesions versus 18% bystander lesion OR in subjects that did not achieve this level or response in their target lesions;
  • Stage III subjects experienced a substantially higher target lesion response rate (60% OR and 79% disease control) versus Stage IV subjects (22% and 33%, respectively);
  • Similar trends were noted in response metrics for bystander lesions between these two subpopulations;
  • Analysis of temporal data showed that Stage III subjects also experienced significantly greater mean Progression Free Survival (PFS) of at least 9.7 months, versus 3.1 months for Stage IV subjects (median PFS for Stage III subjects was not reached during the 12-month study interval);
  • Overall survival (OS) data were also presented by disease stage, with Stage III subjects achieving a mean overall survival of at least 12.6 months (median not reached during the study interval) versus 7.3 months for Stage IV subjects.
  • Case studies on several subjects illustrated potential stasis or regression of untreated visceral lesions following PV-10 treatment of their cutaneous lesions, while data on long-term treatment of one study participant demonstrated successful management of the disease over a period exceeding 3 years.

Dr. Eric Wachter, PhD, Chief Technical Officer of Provectus and Study Director for the clinical trial, noted that, "These final analyses confirm previously reported trends from preliminary data. The high response rates for target and bystander lesions in Stage III subjects are particularly striking and illustrate the potential for PV-10 to benefit these challenging cases."

Dr. Agarwala, commenting on the reported data, stated, "These results further confirm the robust response that can be achieved with PV-10. This is particularly clear in Stage III patients where it is possible to inject all or virtually all of the patient's melanoma lesions. Despite the strict limits on dosing schedule in the Phase 2 protocol, many of the patients achieved excellent disease control or even complete remission. I find it quite remarkable that this included a number of subjects who experienced favorable response in their untreated skin or visceral lesions."

Stage III, Unknown Primary; 1 positive node in left axilla

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Kimmie Kay's picture
Replies 5
Last reply 10/2/2012 - 1:17pm

I am hoping to find someone who also has Ocular Melanoma that can help me thru this!

I went to my eye Dr on July 26, 2012 to have him check a "shadow" that had developed in my right eye,

He saw "something" and immediately sent me to a retina specialist who would "see me as soon as I could get there"

Within 5 hours of getting out of bed that morning I had a diagnosis of melanoma..inside my eyeball! 4 days later, I am at the Universityof Cincinnati being scheduled for radiation plaque therapy.

My "official" diagnosis after biopsy and having the raditation implanted for 5 days is "Ciliochoroidal melanoma" that was 16.5mm acrossand 8mm thick. 

I am now legally blind in that eye and have a cataract beginning to cover the lense.  The Dr said the cataract can't be removed for 3-6 months. Has anyone here been thru this? Will my sight ever return?  While I am extremely thankfull that the treatment is working to shrink the tumor, I make my living driving a school bus! Obviously, I can't return to work with only one eye and am afraid I am going to use up all of my sick leave before the cataract can be removed.

Can anyone help me? 

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Tina D's picture
Replies 7
Last reply 10/2/2012 - 11:38am

I have been on Z since May, had a couple weeks off due to severe rash, restarted on 3 pills twice daily & had scans showing NED beginning of July. A couple weeks ago, I started getting increasingly ill and we assumed it was from the Z side effects. But I was running increased temp, chills, increased nausea/vomiting and just feeling BAD. Was taken off for  a week to see if that would help and during that time had extreme epigastric pain,etc. Found a large gallstone completely blocking gallbladder. Had surgery 10 days ago to have it removed ( and they also found my intestines adhered to my liver from previous scar tissue). I was supposed to restart the Z a week post-op, but was still no where near recovered & restarting the side effects was rather intimidating! Yesterday my oncologist said to take 2 more weeks off. So.... I am really looking foward to having this time to get back on my feet. In fact, tonight we are going out to celebrate our 2nd eldest daughter's passing her LPN boards this past week! It is nice to be starting to feel a little better.

Anyone else had to take this long of a break from Zelboraf? how were the side effects when you restarted ? 


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Linny's picture
Replies 3
Last reply 10/2/2012 - 7:47am
Replies by: Linny, JerryfromFauq, Anonymous

MAYWOOD, Il. - Loyola University Medical Center has launched the first clinical trial in the Midwest of an experimental melanoma treatment that genetically engineers a patient's immune system to fight the deadly cancer.

A batch of the immune system's killer T cells will be removed from the patient and genetically modified in a Loyola lab. Two genes will be inserted into the T cells so that they will recognize tumor cells as abnormal.

The patient will undergo high-dose chemotherapy to kill most of his or her remaining T cells. This will make room for the genetically modified T cells when they are put back in the patient. The modified T cells, it is hoped, will recognize the tumor cells as abnormal and then attack and kill them.

"This clinical trial is a unique attempt to manipulate a person's own immune system to attack their cancer in a more effective and specific manner," said Joseph Clark, MD, one of the principal investigators of the trial.

The purpose of the Phase 1 trial is to determine the optimum dose and whether the treatment is safe. Four doses will be tested, with the highest dose consisting of about 5 billion genetically modified T cells. If Phase 1 demonstrates the treatment is safe, investigators will proceed to Phase 2, which will determine whether the treatment is effective.

Melanoma is the sixth-most-common cancer in Americans, and the most common fatal malignancy in young adults. Incidence is rising dramatically. About 1 in 50 people will be diagnosed with melanoma. In the 1960s, it was 1 in 600.

Surgery is highly successful if the cancer is caught early. But if the cancer has spread to other parts of the body, the five-year survival rate is only 15 to 20 percent, according to the American Cancer Society.

"This is a terrible, devastating disease," Clark said. "It starts on the skin and can spread to just about anywhere in the body." The clinical trial is open to patients with metastatic melanoma who are no longer responding to standard therapy. "We need better treatments," Clark said. "Our clinical trial is designed for patients who have no other options."

The experimental immune system therapy was developed by Michael I. Nishimura, PhD, director of the Immunotherapeutics Program at Loyola's Cardinal Bernardin Cancer Center. The cells will be prepared in the Robert R. McCormick Foundation Center for Cellular Therapy in the Bernardin Cancer Center. Nishimura is principal investigator of a five-year, $16.3 million grant from the National Cancer Institute. "Our goal is to create novel therapies for the treatment of advanced malignancies," he said.

Additional funding for the trial comes from a National Cancer Institute grant to Lentigen Corp., which makes the vector that delivers the genes to the T cells, and from the American Recovery and Reinvestment Act (the economic stimulus bill).

Clark is a professor in the Department of Medicine, Division of Hematology/Oncology of Loyola University Stritch School of Medicine. Nishimura is a professor in the Department of Surgery and associate director of the Oncology Institute of Loyola University Chicago Stritch School of Medicine.

Stage III, Unknown Primary; 1 positive node in left axilla

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Some melanomas have KRAS, some have both KRAS andBRAF.

Ganetespib Showed Activity in KRAS-Mutant NSCLC as Monotherapy and in Combinations

ScienceDaily (Jan. 10, 2012) — The investigational drug ganetespib, a synthetic second-generation Hsp90 inhibitor, slowed the growth of cancer cells taken from non-small cell lung cancer tumors with a mutation in the KRAS gene. The drug was even more active when combined with traditional lung cancer treatments and other investigational targeted therapies, according to preclinical study data.

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David A. Proia, Ph.D., and Jaime Acquaviva, Ph.D., scientists at Synta Pharmaceuticals Corp., presented the data at the AACR-IASLC Joint Conference on Molecular Origins of Lung Cancer: Biology, Therapy and Personalized Medicine, held Jan. 8-11, 2012.
I'm me, not a statistic. Praying to not be one for years yet.

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Kellie-T's picture
Replies 4
Last reply 10/1/2012 - 9:12pm

I have noticed since taking Zelboraf that my teeth are more sensitive and my gums bleed every time I floss. Anyone else experience more than unusual bleeding from routine dental care?


Life is not by accident. Make every minute count.

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Doug-Pepper's picture
Replies 3
Last reply 10/1/2012 - 1:40pm
Replies by: Doug-Pepper, Mandi0280

We went for Doug's routine appointment with his oncologist for blood work & chest x-ray last Tuesday. A small spot showed up on his left lung, so he was scheduled for a PET scan on Thursday. We were very anxious as you all know. We were to go in Monday morning for the results. His wonderful Dr. called Friday afternoon with clear scan results. So thankful. Next month will be 2 years Ned. My heart breaks for so many on here. I also know that we have to share any good news to give hope to others. Still juicing in the morning & trying to avoid processed food & taking lots of supplements. Prayers going up for others facing this disease... Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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JerryfromFauq's picture
Replies 3
Last reply 10/1/2012 - 6:16am

Received my Lab Corp CBC results from the 14th.   
WBC  was 3.6 vs the 2.57 on the 8th (Ref: 4.0-10.5).
RBC         3.11 vs the 1.99 on the 8th (ref: 4.14-5.8)
HGB         10.6 vs the 7.5 on the 8th (ref: 12.6-17.7)
Not great, but much better than I started the month! 

Supposed to get another CBC done this week.  Feel like the counts should be about the same. 

Hopefully I can start back on the Gleevec.

The past month is the first time that the WBC has dropped below the normal range.  The RBC has ran between 3.13 and 3.6 for the last two years on the Gleevec.

The HGB has ran in the 10.s for the last two years (7.5 is  the point they do transfusions).

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

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