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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CF1975's picture
Replies 3
Last reply 3/21/2012 - 7:23am
Replies by: Richard_K, CF1975, deardad

My father in law recently had his spleen and piece of his lung removed. He was put on Zelboraf as an experiment to prevent the melanoma from coming back. We live near the water and we are constantly out doors. With summer approaching, we are finding it very difficult for him to be out doors. Does anyone have any suggestions while on this drug to help with protection from the sun. He has become so sensitive that he is afraid to go out doors. Anyone find a good sun block that might work better than others? Or any suggestions at all would be grateful.

Thank you

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cody's picture
Replies 7
Last reply 3/23/2012 - 1:23am

I've been reading posts on this site for several years now, and wanted to let everyone know what an AMAZING group of people I think you all are. I see the term "Melanoma Warrior" used quite a bit and I have to say that that is an incredibly accurate description. I know this because of your stories, attitudes, kindness to each other and your incredible resolve! And it has just dawned on me this past week that my wife is one of you!!

She was diagnosed with Stage 2B melanoma in June of 2007. She had an ulcerated nodule removed from the back of her left calf and two seperate Oncologists decided that treatment wasnt necessary at the time. Close monitoring was the answer. Since then shes had three seperate operations to remove metastatic melanoma in her right arm and left leg. It has obviously travelled through her body to get to these other locations, so we have been told she is now Stage IV and her Doctors in Boston have told her they expect it to come back. It's really a matter of when and where. She went through interferon treatment last year, but it was too tough on her liver and they stopped the treatment a little over halfway through. A PET scan a couple weeks later revealed a small tumor in her calf, so it obviously wasnt working anyway. We were in Boston just last week for the results of a March 7th PET Scan and Brain MRI. To say we were nervous and scared is an understatement, but I'm sure I don't have to tell anyone that here on this board. The scan came back clear so we have another couple of months before the fear starts setting in again. With that in mind, I just wanted to say I wish everyone the best and not a day goes by I don't think about the battle everyone is going through. My thoughts and prayers are with you all.  

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ScienceDaily (Mar. 19, 2012) — Mayo Clinic researchers have trained mouse immune systems to eradicate skin cancer from within, using a genetic combination of human DNA from melanoma cells and a cousin of the rabies virus. The strategy, called cancer immunotherapy, uses a genetically engineered version of the vesicular stomatitis virus to deliver a broad spectrum of genes derived from melanoma cancer cells directly into tumors. In early studies, 60 percent of tumor-burdened mice were cured in fewer than three months and with minimal side effects.

 
 Results of the latest study appear this week in the journal Nature Biotechnology.

"We believe that this new technique will help us to identify a whole new set of genes that encode antigens that are important in stimulating the immune system to reject cancer. In particular, we have seen that several proteins need to be expressed together to generate the most effective rejection of the tumors in mice," says Richard Vile, Ph.D., a Mayo Clinic researcher in the Department of Molecular Medicine and a coauthor of the study, along with Jose Pulido, M.D., a Mayo Clinic ophthalmologist and ocular oncologist.

Dr. Vile's success with melanoma adds to Mayo Clinic's growing portfolio of experimental cancer vaccines, which includes an active clinical trial of vesicular stomatitis vaccines for liver cancers. Future studies could include similar vaccines for more aggressive cancers, such as lung, brain and pancreatic.

"I do believe we can create vaccines that will knock them off one by one," Dr. Vile says. "By vaccinating against multiple proteins at once, we hope that we will be able to treat both the primary tumor and also protect against recurrence."

The immune system functions on a seek-and-destroy platform and has fine-tuned its capacity to identify viral invaders such as vesicular stomatitis virus. Part of the appeal of building cancer vaccines from the whole spectrum of tumor DNA is that tumors can adapt to the repeated attacks of a healthy immune system and display fewer antigens (or signposts) that the immune system can identify.

Cancers can learn to hide from a normal immune system, but appear unable to escape an immune system trained by the vesicular stomatitis virus with the wide range of DNA used in the library approach.

"Nobody knows how many antigens the immune system can really see on tumor cells," says Dr. Vile. "By expressing all of these proteins in highly immunogenic viruses, we increased their visibility to the immune system. The immune system now thinks it is being invaded by the viruses, which are expressing cancer-related antigens that should be eliminated."

Much immunotherapy research has slowed because of researchers' inability to isolate a sufficiently diverse collection of antigens in tumor cells. Tumors in these scenarios are able to mutate and reestablish themselves in spite of the body's immune system.

The study was a Mayo collaboration with professors Alan Melcher and Peter Selby at the Leeds Institute of Molecular Medicine, University of Leeds, U.K. They were also co-authors.

Other coauthors of the article are Timothy Kottke; Jill Thompson; Feorillo Galivo, Ph.D; Rosa Maria Diaz; Diana Rommelfanger-Konkol; Elizabeth Ilett; and Larry Pease, Ph.D., all of Mayo Clinic; Hardev Pandha, M.D., University of Surrey, Guildford, U.K.; Phonphimon Wongthida, Ph.D., Department of Virology and Cell Technology at the National Center for Genetic Engineering and Biotechnology, Pathumthani, Thailand; and Kevin Harrington, Ph.D., Institute of Cancer Research, London, U.K.

The study was funded by the Richard M. Schulze Family Foundation, Mayo Clinic, Cancer Research UK, the National Institutes of Health, and a grant from Terry and Judith Paul

http://www.sciencedaily.com/releases/2012/03/120319111542.htm

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

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Vemurafenib Extends Survival To 16 Months For Some Patients With Metastatic Melanoma http://www.medicalnewstoday.com/releases/243066.php

20 Mar 2012

An international team of researchers from the United States and Australia, including researchers at Moffitt Cancer Center in Tampa, Fla., have found that the oral BRAF inhibitor vemurafenib (PLX4032) when tested in a phase II clinical trial offered a high rate of response in patients with previously treated metastatic melanoma and who had the BRAF mutation. More than 50 percent of the patients in the trial had positive, prolonged responses and a median survival of almost 16 months.

The study was published in a recent issue of the New England Journal of Medicine.

According to study co-author Jeffrey S. Weber, M.D., Ph.D., director of the Donald A. Adam Comprehensive Melanoma Research Center at Moffitt, approximately 50 percent of melanomas harbor the activating (V600) mutation threonine protein kinase B-RAF. Unfortunately, treatment options for these patients are "limited."

The BRAF inhibitor vemurafenib had been found effective in phase I and phase III trials. However, to determine the overall response rate in previously treated stage IV melanoma patients, the researchers designed a multi-center, phase II trial with 132 patients with previously treated BRAF V600-mutant metastatic melanoma. The trial was designed by senior academic authors and representatives of the trial sponsor, Hoffman-La Roche, and was open to adults over the age of 18 with histologically proven stage IV melanoma, progressive disease, and at least one prior systemic treatment.

"Few patients with metastatic melanoma bearing the BRAF V600 mutation have a response to systemic chemotherapies," said Weber. "Additionally, most have a median survival of only six to 10 months. However, this study yielded an overall response rate of 56 percent and a median survival of nearly 16 months."

The 56 percent response rate for this study was higher than the response rates reported on studies with other therapies for a majority of patients, such as the monoclonal antibody impilimumab. Once more, the response for patients in the vemurafenib phase II trial was "rapid," said the study authors, with less than 15 percent of patients having had disease progression at their first evaluation.

"This trial showed that vemurafenib has clinically evident anti-tumor activity in metastatic melanoma, and that response rates are higher than those associated with previously used treatments," concluded Weber.

The authors reported that toxic effects were common, but not severe or life-threatening in most cases. They added that, as with most targeted therapies that block a driver oconogene, cancer cells can develop resistance with continued dosing and the molecular mechanisms of vemurafenib are "under investigation" at Moffitt by Keiran S. Smalley, Ph.D., and at other institutions to answer questions about resistance.

References:
H. Lee Moffitt Cancer Center & Research Institute

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

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Wilfred's picture
Replies 6
Last reply 4/24/2012 - 9:18pm
Replies by: Wilfred, gabsound, Linny

While spreading sunscreen (SPF 50) on my left bicep in February - in Jamaica at the Jamaica Inn where I thoroughly enjoyed myself - I notice a lump that had not been there before. I showed it to my wife and to my sister-in-law who is a nurse. They thought, as did I, that it was something to report to my doctor as soon as I got back to the US. WE got back to MD on Sunday evening, Dr D saw me at 3:00pm on Monday. The lump is about 1 inch in diameter and on the inside of my left arm. Dr D examined me and took a cell sample by aspiration. He gave me an order for a PET/CT and asked me to get it done ASAP. On Thursday of that week, 3/8/12, I had the PET/CT done at Capital Health Hopewell Hospital.The next day Dr D called to say the results were not good and that he wanted me to see Dr Scharfman at Hopkins.  I then went to Kentucky to spend a week as chaperone to some Portsmouth Abbey School students working on an Appalachia Service Project. Yesterday I picked up some CDs of the scan from the hospital to take with me to Dr Scharfman's on Thursday. A copy of the written report was in the envelope.

The report is 4 pages; good news can be reported in a sentence. There is a lot of terminology in the report that I do not understand. While reading it again last night,I used Google search to help me with various terms. For example: an SUV of 9.4 in my left bicep, intense uptake in the region of the pancreatic tail, focal abnormal uptake right hiliar region with suspected nodule of 7mm and an SUV of 15, intense focal uptakes within the left upper abdomen and mid abdomen, uptakes in my legs, lungs, colon. There are mentions of other uptakes in other places as well. The part that really bothers me is the in the Impression section: "Multiple focal areas of increased metabolic activity consistent with metastatic melanoma."

So...finally... I get to my point. What are the questions that I should ask Dr Scharfman on Thursday afternoon? This is the eighth time the M word has been used next to my name. I am positive and upbeat, worked my *** off down in Kentucky and told funny stories to the kids. My wife and children are very supportive and I am not afraid of the future. But I do want to understand what all this means before I meet with Dr Scharfman. Thanks, Wilfred

If you fight, you may lose, If you don’t fight, you will lose.

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AlisonC's picture
Replies 4
Last reply 3/21/2012 - 10:02pm

Hi everyone

My friend Dave - who posts here as DavidfromSingapore - is in the hospital and an MRI yesterday showed multiple new lesions. It looks like those of you who posted below about WBR were on the right track.

So any advice from here on ?  They are going to do the final 3 WBR treatments, cease temodar and return to zelboraf, although zelboraf doesn't seem to have held it in check.  The feeling is that there isn't time to start Ipi and have it take effect given the speed of progression.

your advice thoughts on any medications to (a) help fight the mel and (b) keep him comfortable ?  He is on dex but getting a lot of breakthrough headaches and pain which are preventing him (and his wife) from resting. Not wanting to throw in the towel treatment wise but being very realistic.  Any suggestions for possible avenues and advice on what has helped you/your loved ones at this stage ?

Many thanks in advance for any replies

AlisonC

Stage IIIB

NED since 2001

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JakeinNY's picture
Replies 13
Last reply 7/14/2014 - 9:02am

This study was published last year. Although none of the patients were melanoma patients, it doesn't seem to be a stretch that it may help mm patients.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157418/?tool=pubmed

I personally am already on a carb and sugar restricted diet and although this is such a small study, it is promising and is something worthwhile mentioning.

Do the best you can.

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deardad's picture
Replies 10
Last reply 3/24/2012 - 7:26am

To the international community on here you may not know Jim Stynes and he wasn't as far as I know I member on this board.

He fought this disease (stage 4) for nearly 3 years using his high profile as a Australian rules footballer to educate others. He passed away this morning, he was 45yrs old.

From what I understand he had numerous brain surgeries and in the end was on a antiPD1 trial here in Melbourne which was very new at the time - Nov 2011.

Another brave warrior lost.

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BrianP's picture
Replies 8
Last reply 4/2/2012 - 10:13am

I'm in my 4th month of interferon treatment.  All things considered it is going well.  I wanted to see what other patient's oncologist recommend for their scan schedule.  From what I've seen it seems like most recommend a brain MRI and petscan every three months for the first year.  I'm coming up on my 6 month scan and the oncologist is only recommending the petscan.  I'm insisting on the brain MRI as well.  Was curious what others are doing. 

Brian

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JakeinNY's picture
Replies 5
Last reply 3/19/2012 - 9:22pm

I haven't been on our site in several months but wanted to post that as of January 15, I am now 4 years, 3 months with clean PET/CT scans since the surgery to remove a malignancy in my parotid lymph node. I thank God and my doctors.

Do the best you can.

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ScienceDaily (Mar. 8, 2012) — Researchers say they may have discovered a new drug for the treatment of metastatic melanoma, one that uses the patient's own tumor cells to customize the therapy. The findings are published in the March issue of the journal Clinical Cancer Research.

The drug is sunitinib, which has already been approved by the FDA for the treatment of kidney cancer and gastrointestinal stromal cancer. In this Phase II clinical trial sunitinib proved effective against rare forms of melanoma that occur on parts of the body that the sun doesn't hit -- such as the mucosal surfaces of the mouth, the soles of the feet, and the palms of the hand.

"This form of skin cancer is particularly difficult to treat because it is resistant to chemotherapy, one of the standard therapies for most forms of cancer," says David Minor, MD, Director of Inpatient Oncology at California Pacific Medical Center -- part of the Sutter Health network -- and the co-author of the article. "Studies show that single-agent chemotherapy only produces a response rate of between 5 to 20 percent in patients with this form of cancer. So having one that produces a response of more than 50 percent is a big advance."

The forms of melanoma that were targeted in this study all have mutations in a gene called KIT, the tyrosine kinase receptor gene. The mutation makes an abnormal protein which then drives the growth of the tumor cell. Sunitinib works by turning off that protein and slowing down the cancer growth.

The researchers tested sunitinib in ten patients with advanced stage 4 metastatic melanoma who had the KIT mutation. Of those ten, four were able to complete the trial. Three of the four responded positively to the medication; one had a complete disappearance of her liver metastases for 15 months; the other two had remissions of seven months and one month.

"We need to be cautious because of the small number of patients involved in this trial," says Mohammed Kashani-Sabet, MD, a senior researcher at the CPMC Research Institute, Medical Director of CPMC's Center for Melanoma Research and Treatment, and the co-author of the study. "However, these results are encouraging because they are far better than we would expect to see with chemotherapy for this form of melanoma, and for this stage of the disease."

The researchers say that melanoma, like all cancers, is different in different people and that there are different gene mutations depending on the form. By identifying those who have the KIT mutation -- and sunitinib would not help a patient unless they had that mutation -- they are able to personalize the cancer therapy.

Because it has already been approved for the treatment of other cancers sunitinib has been well studied in larger patient populations. Side effects can include fatigue, low blood counts and a rash, but it is otherwise well tolerated by most people taking it.

The next step is to test the drug in a larger multi-center trial, possibly even involving patients at an earlier stage of the disease.

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

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JoshF's picture
Replies 1
Last reply 3/21/2012 - 7:58am
Replies by: FormerCaregiver

Had scan this past week. Just about a year into it and another clear scan. Also had genetic testing done BRAF was negative. Doc is going to continue to  treat as Stage 4 in regards to  follow up as with never finding a primary he would like to stay aggressive. Nearly a year later but I'm still confused. I'm blessed and thankful that I found this site and all the warriors on it. I'm sending positive energy out to all of you...keep on!!!

 

Josh

Let's work for better treatments....for a cure!!!!

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QueenBZ's picture
Replies 5
Last reply 3/21/2012 - 6:42am

I hope I am not overstepping proper protocol but I had noticed KatyWI had not been active on the board for a while.  Sadly, she passed away Friday, March 16th.  I was in email contact with Katy on occasion being that we live in such close proximity.  She had completed the WI Ironman on September 11th with the proceeds going to MRF and her positive attitude about life just struck a cord with me. So hard to believe in just 6 months someone can go from the success of completing the grueling test of endurance of an Ironman to succumbing to this beast.  I have such a heavy heart and my prayers are with her family.

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Candi13's picture
Replies 23
Last reply 8/18/2014 - 10:47am

Hi,

I am posting my good news to share information on the Merck PD-1 trial.

I started this trial on 12/20/11. After only 3 infusions, I could see 2 subq's on my leg and chest start shrinking.

Last week, I had my first 12 week scans since starting to take this drug. My doctor told me that there was NO CANCER
anywhere in my body.

Starting the trial, I had tumors in my leg, on my chest and BOTH lungs. Being stage 4, this is truly a miracle after
only taking this drug for 12 weeks. My doctor told me, I am a “complete responder”.

I know of 2 other patients who started this trial in December 2011 with me. One patient with lung mets is a complete
responder. The other patient is a partial responder.

For those interested in this trial, here is the link:
http://clinicaltrials.gov/ct2/show/NCT01295827

I know that there are openings for this trial at UCLA Medical Center with Dr. Ribas. His email ARibas@mednet.ucla.edu

Good Luck to Everyone fighting Mel.

Candi

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