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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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.

Peace,

Julie

Stage 3 WLE, SNB, LNB, HD-INF, GM-CSF

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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Anonymous's picture
Anonymous
Replies 9
Last reply 10/5/2012 - 8:21am
Replies by: Tina D, natasha, Linny, Anonymous, Janner, Tim--MRF

Hello All,

I am female 40 y.o. stage 1B patient (diagnosed in 2004). About 3 weeks ago I noticed strange bump on my vulva. It was slightly raised but I cannot say it is a mole because it appeared being in/under the skin. When I tried to define its shape by palpation, I cannot define it for sure. The color was reddish but that goes away when you press on it. The best way to describe it is that it is an induration in the upper part of the skin, which is raised. I was over the hill with worry. Saw OB/GYN who thought that it was a blocked folicle and said come back in 2 weeks if it doesn.t go away. This lesion was bothering me when I was walking (kind of burning sensation), besides, it had an erosion and scab on and off. Today (in 2 weeks) I saw OB/GYN who took it out for me (I insisted) and sent it away for pathology. He believes it is nothing and I am a crazy patient but I am very stressed thinking about what it may be. Can second primary of metastasis of cutaneous melanoma present in vulva???? How would it look like in vulva??? I am very, very worried. Thanks for listening.

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

http://www.dailyfinance.com/2012/10/02/provectus-pharmaceuticals-presents-final-phase-2-m/

KNOXVILLE, Tenn.--(BUSINESS WIRE)-- Provectus Pharmaceuticals, Inc. (OTC BB: PVCT, http://www.pvct.com), 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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PV-10. Has anyone heard of this stuff? What is it?

http://www.dailyfinance.com/2012/10/02/provectus-pharmaceuticals-presents-final-phase-2-m/

KNOXVILLE, Tenn.--(BUSINESS WIRE)-- Provectus Pharmaceuticals, Inc. (OTC BB: PVCT, http://www.pvct.com), 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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Some melanomas have KRAS, some have both KRAS andBRAF.

 

http://www.sciencedaily.com/releases/2012/01/120111090607.htm

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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Replies by: Jim M.

Anybody else see the press release yesterday from Bristol-Myers Squibb about four and five year survival rates of Yervoy patients in several different trials? (see www.bsm.com, select news, and then press releases.) Here are the headline bullets:

  • Long-Term Follow Up From Phase 3 Study (024) Demonstrated That 19.0 Percent of Treatment-Naïve Patients Who Received YERVOY at Investigational Dose of 10 mg/kg Plus Dacarbazine (DTIC) Were Alive at Four Years vs. 9.6 Percent of Patients Treated with DTIC Alone
  • Few New Immune-Related Adverse Events Occurred Beyond Two Years of Treatment in Study 024
  • Five-Year Follow Up from Three Exploratory Phase 2 Trials Add to Growing Body of Survival Data for YERVOY in Metastatic Melanoma
  • In Both Analyses, Updated Survival Rates Remained Relatively Stable Over Time                                                                                                                                                                                                                                             

But it was the details of that reports that had some remarkable statistics. Here's one taken out of context from the results of 3 phase II trials (there were varying dosages of Yervoy among other things) so read the article:

“In treatment-naïve patients, the five-year estimated survival rates ranged from 38% to 49%, which was unchanged from the four-year rates.”

I don't try and interpret clinical study data because there are so many variables it hard for me to make a decisive conclusions(and I'm a scientist) but these claims sure sounds good.

I was diagnosed with stage IV melanoma about a year ago. After I finished my Yervoy infusions (3 mg/kg) six months ago, I have had reductions or stable tumors in all three subsequent scans (Thank You God!). But I'm having trouble finding current information on how long this this might continue. I know we all are different but would like to hear about longtime (greater than a year) survivors.

Thanks,

Mike

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

 

http://www.sciencecodex.com/genetically_engineered_immune_system_fights_melanoma-99369

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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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?

Thanks

Life is not by accident. Make every minute count.

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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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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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http://clinicaltrials.gov/ct2/show/NCT01584648

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,

Harry

Too ugly to die!

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JerryfromFauq's picture
Replies 2
Last reply 9/29/2012 - 4:02pm
Replies by: JerryfromFauq, jag
 

An Emerging Role for Anti-inflammatory Agents for Chemoprevention.

Source

Division of Gastroenterology Massachusetts General Hospital, Harvard Medical School, 55 Fruit Street, Boston, MA, 02114, USA, achan@partners.org.

Abstract

There have been a number of promising recent developments in the prevention of colorectal cancer. This book examines in detail important aspects of the current status of and future prospects for chemoprevention of colorectal tumors, particularly using anti-inflammatory drugs. Research into the mechanisms that lead from early colorectal adenoma to colorectal cancer is discussed. The role and modes of action of available anti-inflammatory drugs, such as aspirin, celecoxib, and sulindac are described and recent data from trials of aspirin are reviewed. In addition, the possible impact of nutritional agents with anti-inflammatory properties is considered, and strategies applicable in those with a high level of genetic risk are evaluated. An important feature of the book is its interdisciplinary perspective, offering highly relevant information for gastroenterologists, internists, general practitioners, oncologists, colorectal and gastroenterological surgeons, and public health practitioners.

PMID:
22893197
[PubMed - in process]
I'm me, not a statistic. Praying to not be one for years yet.

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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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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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sjl's picture
Replies 5
Last reply 10/1/2012 - 2:03am

My husband had his 3rd round of carbo/taxol for his stage 3 mucosal melanoma today.  Before the treatment, they did a scan and his tumors have shrunk 75% plus a second primary lung cancer is shrinking before they got to the radiation they are going to do!  The doctor is very happy and said that sometimes, with mucosal, they can get a durable response with chemo.  Anybody here have mucosal?  I'd like to hear of your expeeriences.  He will have at least two more rounds of chemo and another scan in 6 weeks to see how things are.  So many people are praying for him and our prayers are being answered.

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