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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Eileen L's picture
Replies 8
Last reply 7/26/2012 - 1:27am
Replies by: Eileen L, Harry in Fair Oaks, King, Jeff's Mom, Anonymous

Hi, folks. Just a quick update on what I am experiencing on the Hoffman-Roche BRAF/MEK trial. I had PET/CT about two weeks ago that basically showed my two tumors, one lung and one adrenal gland, had an overall 50% reduction in mass and are in no longer reactive. The radiologist thinks the remaining tumor might be just dead tissue. This is after only six weeks on the drug combo! Also, almost all of the side effects (rash on my legs, trunk, arms and face, joint pains, fever and chills, sores in my mouth, fatigue, sore feet and fingers) are gone except for the sun sensitivity. I just developed a new mild rash about a  week ago  on my abdomen that appeared during the week that I wasn't on MEK (this trial has me on the BRAF all the time and the MEK 3 weeks on, one week off) which resolved when I went back on the MEK.  

I am extremely pleased with the results! The biggest problem has been the number of appointments I have had. Since it is a Phase I trial they are keeping very close tabs of us at the beginning, with weekly lab draws, EKGs, doctor's appointments, etc. Now that I have been in the trial for eight weeks I go to monthly appointments, lab draws, and EKGs, and every six week PET/CT scans. I expect to soon glow in the dark from all the scans! 

Eileen L

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himynameiskevin's picture
Replies 12
Last reply 7/24/2012 - 4:27pm

Well this morning marks two years since being/knowing I was stage IV. A long journey it's been, and this mornings brain MRI has me feeling a little like I did two years ago. The images show some new tumors, there were a few tiny areas that were left untreated when I started Zelboraf. So maybe those, maybe a couple more? Radiation oncologist is going to get all the details out of the scans to have all the info possible come Wednesday morning, when I see her again, to discuss the options and treatment. I'm guessing more SRS or trying WBR for the first time, I don't know. She said they were small though, none over a cm. And told me not to lose sleep over it. I won't, I'm experencing a sense of calm, not sure what to make of that.

Anyway, I should have PETCT soon, not sure the protocol from here, if they're just going to take me off Zelboraf or if there are any options left. I may be out of the loop, I know most trials won't accept someone with brain mets. Despite the status of my head, I feel close to normal, no noticible strange neurological symptoms. If anyone knows something new I'm unaware of, I'd like to know. I've done IL-2, Adoptive Cell Therapy with young TIL and IL-2, a few rounds of SRS, Yervoy, and Zelboraf. Thanks in advance.

Warmly, -Kevin

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LynnLuc's picture
Replies 1
Last reply 7/23/2012 - 8:38pm
Replies by: Anonymous

 

Melanoma researchers have been struggling with this question: Which mutations drive this cancer that lead to ultraviolet (UV)-induced genetic damage in tumor cells caused by sunlight exposure?

There have yet to be any mutations conclusively tied to melanoma. The great quantity of these passenger mutations has pulled away from the search for genetic driver mutations that are most important in melanoma development and progression.

Scientists at the Broad Institute of MIT and Harvard, the Dana-Farber Cancer Institute and The University of Texas MD Anderson Cancer Center created a method to mark the drivers while amongst a great amount of passengers. They then found 6 genes with driving mutations in melanoma, three having damage inflicted by UV light which causes recurrent 'hotspot' mutations. The research can be found in the July 20 issue of the journal Cell.

Co-senior author Lynda Chin, M.D., Professor and Chair of MD Anderson's Department of Genomic Medicine, explained:

 

"Those three mutations are the first 'smoking gun' genomic evidence directly linking damage from UV light to melanoma. Until now, that link has been based on epidemiological evidence and experimental data."

"This study also is exciting because many of the recent large-scale genomic studies have not discovered new cancer genes with recurrent hot-spot mutations, a pattern strongly indicative of biological importance," added Chin, who also is scientific director of MD Anderson's Institute for Applied Cancer Science.

According to the researchers, each of the six new melanoma genes they identified are all significantly mutated and provide possible targets for new treatments.

Thousands of Potential Mutations Recognized, Only Need A Few Dozen Significant Ones

There had previously been a great deal of important mutations recognized as melanoma drivers, but they were falsely identified because the majority of these mutations do not seem to be caused by direct damage from UV light, including:

  • BRAF (V600)- present in half of all melanomas
  • NRAS (Q61)

Although those known mutations are valuable, there is still missing information. Compared with other types of solid tumors, Melanoma has higher genetic mutation rates. Most are attributable to passenger mutations resulting from damage by UV light, resulting in a DNA alteration called a cytidine (C) to thymidine (T) transition.

Chin, along with Levi A. Garraway M.D., Ph.D., associate professor at Dana-Farber Cancer Institute and Harvard Medical School, and senior associate member at the Broad Institute, used 121 melanoma samples paired with normal DNA and sequenced the exons (active portions of DNA that are involved in protein synthesis). The experts found 86,813 coding mutations. The consequential mutation rate was larger than in any other tumor type reported.

http://www.medicalnewstoday.com/articles/248105.php?sv=d
 

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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LynnLuc's picture
Replies 11
Last reply 7/24/2012 - 1:59am
 Asking prayer for Linda Protas Haley ..she posted this at 747 AM---"we come home from the beach. I've lost some of me speach and type spelling! He husband is tacking his speaking and taking his shower.Then he are going to the hipital to hours from here. I hate this diseash! Harent told family so not post post ofram fb. ugh.................. hope you get hopre this. This only is just a jf hours! jeen pranayers"
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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bikerwife's picture
Replies 4
Last reply 7/23/2012 - 10:26pm

I feel like shouting and screaming all at the same time. Lynn has been on z for 4 weeks know all the little tumors on outside body have either disappeared are scabbed over. While the side effects have been few. Some mild joint pain and some killer sunburn. We learned hard way on that. Things were going pretty good until our brain scans all 5 they treated are gone. The sad news is they are 2 small ones the size of pin heads maybe they were there before and to little to see or maybe they are new can't really tell. Dr says we can wait awhile before deciding what to do or go ahead and gamma knife them. Lynn choose to go ahead and gamma knife the little pest.

The dr new I was upset and said mrs price we got them last time we will get them this time. Guess z and yervoy didn't work in the brain area. I wanna be strong but its getting tough. My lynn has the good attitude and says we will do what we gotta do cause I'm not giving up or giving in.

Many prays and love to each of you as. You fight.

What God leads u to he will. Lead you through

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http://www.healthcanal.com/cancers/30959-Uncommon-BRAF-Melanoma-Mutation.html

Uncommon BRAF Melanoma Mutation

BRAF Melanoma Mutation Sensitive to MEK Inhibitor Drug Therapy

Dagny Stuart

An uncommon mutation of the BRAF gene in melanoma patients has been found to respond to MEK inhibitor drugs, providing a rationale for routine screening and therapy in melanoma patients who harbor the BRAF L597 mutation.

The new study by co-first-authors Kimberly Brown Dahlman, Ph.D., Junfeng Xia, Ph.D., and Katherine Hutchinson, B.S., Vanderbilt-Ingram Cancer Center (VICC), Nashville, Tenn., was published online July 14 in Cancer Discovery.  The research was led by co-senior authors William Pao, M.D., Ph.D., Jeffrey Sosman, M.D., and Zhongming Zhao, Ph.D., VICC, and Antoni Ribas, M.D., Jonsson Comprehensive Cancer Center, UCLA, Los Angeles, Calif.

Mutations in BRAF V600E or KIT are common in about 40 percent to 50 percent of melanomas, and drugs that block or inhibit BRAF V600E were recently approved for treatment of melanoma patients with these mutations. However, there has been no effective treatment for patients with wildtype (WT) melanoma that is negative for these driver mutations.

To uncover other potentially targetable mutations, the investigators studied the tumor from a 75-year-old patient with an aggressive form of melanoma which was negative for the BRAF V600E mutation. They performed whole genome sequencing on the tumor, along with DNA from matched blood, and confirmed a mutation at BRAF L597.

To determine how many similar mutations might be overlooked by assessing only the BRAF V600 position, they analyzed the mutational status of 49 additional tumor samples negative for V600, as well as recurrent mutations in NRAS and KIT. Two of the tumors (4 percent) were found to have BRAF L597 mutations and a third tumor harbored a BRAF K601E mutation.

BRAF L597 and K601 are adjacent to V600.  Since V600 mutants are sensitive to both BRAF and MEK inhibitor drugs, the investigators tested whether the BRAF inhibitor drug vemurafenib and a MEK inhibitor drug could inhibit cell proliferation signals induced by these mutants in cell lines. The MEK inhibitor led to a dramatic shut down of signaling, suggesting that tumors harboring BRAF L597 and K601 mutations might benefit from treatment with MEK inhibitors.

Confirming this hypothesis, a 69-year-old patient with metastatic melanoma harboring a BRAF L597S mutation experienced significant disease shrinkage after two cycles on therapy with a MEK inhibitor drug called TAK-733, currently in Phase I clinical trials. The patient was disease progression-free after more than 24 weeks.

The authors believe these data demonstrate that BRAF L597 mutations have clinical significance in melanoma. Further study is needed to confirm these findings.

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

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Gene_S's picture
Replies 8
Last reply 7/23/2012 - 8:55am

I have debated posting this news, but my wife has convinced me that it may offer hope to others on this forum! My latest scans now put me in the NED (no evidence of disease) group.  It was a tough battle and I am very grateful and hoping that other here will keep fighting this monster of a disease. I am very thankful to my God above me as well as to my family (especially my wife Judy) for this very happy day. Best wishes,  Gene

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

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deardad's picture
Replies 2
Last reply 7/22/2012 - 7:23pm
Replies by: deardad, benp

Ben just wondering how your scans went after GK.

Hoping all is good.

Nahmi from Melbourne

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RobinS's picture
Replies 2
Last reply 7/23/2012 - 10:21am
Replies by: LynnLuc, Linny

Hello,

My mother has stage 3C melanoma and is looking for a vaccine clinical trial.  She is currently cancer free after removing her all lymph nodes and margins from that region.  Is anyone aware of a clinical trial using vaccines for a person who currently has no tumors?  

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saddaughter's picture
Replies 5
Last reply 7/23/2012 - 8:57am

Although I've never posted before I have been following this site since my dads melanoma recurrence last year. I wanted to say thankyou cause even though I never logged in I found an abundance of information on this site that not only helped my dad make decisions about trials but helped me understand what was going on. After dad was first diagnosed in 2003, had surgery to remove mole on chest and lymph nodes and participated in interfuron trial at RPA sydney. Went for his regular checkups and life went on. I was not aware what a nasty cancer this is and that it could come back suddenly and destroy you. After 8yrs clear came back in his brain last july. Had mets removed and WBR. Put up fight of his life but sadly list his battle on mothers day, 10 months later. Thanks so so much to everyone who posts on this forum so that those of us with no idea can be informed of the journey ahead of us. The information you provide is valuable to those who need to know the truth. Dad was diagnosed at 70 and didn't make 71 but said don't worry ive had a full life and beautiful children and grandchildren,unlike many on this forum. He was the last one in his trial to pass. He knew then how lucky he had been.

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Gene_S's picture
Replies 7
Last reply 7/21/2012 - 9:07pm
Replies by: Anonymous, Webbie73, ChrisTheWilsonZoo, natasha, Donna M.

Skin Cancer Skyrockets as Sunscreen Use Increases

The first tanning lotions were introduced around 1930. The goal was to allow you to stay in the sun longer without burning. A few years later, the melanoma rate began to rise. By the 1960s there were dozens of tanning lotions on the market. Melanoma rates continued to rise.

As the rates of skin cancer increased, it became news. And the makers of tanning lotions saw an  opportunity. They repositioned their products as "sunscreen." After that, the sales of sunscreen continued to climb... along with the rates of melanoma. In fact, the per capita melanoma rate has increased 1,800 percent since the first commercial sunscreens were introduced.

In a moment, you'll see why sunscreen is a contributing cause. But first, let's examine the evidence that sun exposure is actually your best defense against this deadly disease...

Please click here to read the rest of this article.

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

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chalknpens's picture
Replies 22
Last reply 7/23/2012 - 4:46pm

I saw my orthopedist today ... told him of the open wound on my arm, going for closing stitches this afternoon, as third biopsy came back with clear margins. He asked me who my oncologist was. I said I didn't have one. He said I might want to get one.

When did you get an oncologist?

I am not perfect, but I am enough.

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himynameiskevin's picture
Replies 15
Last reply 7/23/2012 - 8:51am

Hi everyone. I'm just checking in with a quick update. As the subject of this post says, I've been on Zelboraf for 4 months and 13 days now. And I think I'm feeling alright. Besides the extreme photosensitivity, I seldom have joint and muscle pain/weakness anymore. Theres been some gastrointestinal irritation,  and definitely have a bit of skin irritation - a few spots of irritation, like roughness or a goose bump type feeling. Nothing major though. I've had a slight headache (random pains that come and go quickly) and a little sinus congestion for the past two days. But I did take a short trip to my hometown, Tucson, which was 100degrees one day and thunderstorms and hail the next, and a a hotel with A/C, back to San Diego on warm day with no A/C here. I'm hoping this headache was just because of all the changes in climate.

I'd be lying if I said I wasn't scared though.

My last PET/CT was late April and my last Brain MRI was May 1st. Both of which looked good and showed that Zelboraf was working. For the most part everything feels ok, physically and neurologically, as far as I can tell. I've been off the steroid for three months now and just need my head to be clear or on the mend to maybe qualify for any trials, if there's any more out there I'd be fit for. I have PET/CT in the coming weeks and a brain MRI on Monday, coincidentally, exactly 2 years from the day my dermatologist had to break the news to me and this new life started. I'm hoping to update you all with a good report. We'll see how it goes. Thanks for hearing me out. I'll talk to you soon.

Warmly, -Kevin

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AllyNTAus's picture
Replies 11
Last reply 7/23/2013 - 8:59pm

Hi everyone, I just wanted to share a positive story about this BRAF inhibitor that I know some of you are also taking.

I have been on Dab for nearly 12 weeks, I failed entry to the BRAF/MEK inhibitor trial due to my lung condition at the time of assessment but GSK granted me compassionate access. When I started taking it, I was in need of steroids to allow me to breath properly, there were multiple small flat mucosal lesions in my lungs threatening to grow into tumors as well as one defined nodule of 4mm, and a number of my lymph nodes were significantly enlarged.

I had my first set of review scans today, and good results. All of the lymph nodes that were identified have decreased in size, eg one that was 16 x 40mm is now measuring 22 x 6mm, a 25 x 16mm is now 9 x 5mm, a 20 x 28mm is now 15 x 10mm (I won't bore you with all the measurements but you get the idea). My lungs are described as"clear with no pulmonary nodule seen". All my other organs remain clear (thankfully I hadn't developed mets anywhere else before I started Dab).

I am so relieved to have this improvement within 12 weeks and can only hope it continues. Every moment more I get with my family especially my husband and little son is so precious. And I am so greatful to the scientists and doctors who have brought about this advance.

Hoping others of you find strength for your battles.
Ally

A bad day's fishing beats a good day's work everytime

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Nell's picture
Replies 1
Last reply 7/20/2012 - 3:50pm
Replies by: RMcLegal

Is Yervoy approved for use on stage III patients, or is it only being used in trials for stage III?  It doesn't seem like there is much available for stage III...

One voice can make a song; one life can change the world.

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