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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Anonymous's picture
Replies 10
Last reply 11/3/2013 - 4:53pm
Replies by: UrsulaZ, jogo, JoshF, gostan, ecc26, Gene_S, Anonymous

I have been on Yervoy, going on 3rd infusion and I have had little to no side effects. From my understanding, side effects can be delayed. My concern is that if there are no side means you're not responding. I'm a bit concerned but doctor and nurse said that they have seen differences across the board and have patient who had no side effects become complete responders. I know many of you have experience with Yervoy....can someone who's been through give their perspective.

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

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New Biomarker Could Aid In Melanoma Treatment
11/1/2013 1:18 PM ET

A new biomarker has been discovered that could aid in the treatment of melanoma, according to researchers from Massachusetts General Hospital Cancer Center and Harvard Medical School. The marker is a variation in the BRAF gene that could indicate whether a targeted treatment for the gene will be effective.

Roughly half of all melanoma patients suffer from a mutation of the BRAF gene and several BRAF-targeted medications are already on the market. Using the newly identified biomarker, doctors will better be able to predict which patients will respond to BRAF drugs.

"Our study has identified decreased phosphorylation of the protein S6 after treatment with BRAF-targeted drugs as a functional biomarker that predicts sensitivity of BRAF-mutant melanomas to these drugs," the researchers said.

"As a result, we think that we can quickly determine whether or not a patient is likely to respond to a BRAF-targeted drug and help speed up treatment decisions, although we need to verify this in larger clinical studies."

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

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Very Good Brief  presented by Dr Atkins in Moffittnews April 6, 2013 at Moffitt Cancer Center.  Between 8 and 20 minutes of the video, he says what I have been saying about not ignoring IL-2 and ways of  identifying who it is likely to work on.  HE covers the field of current approved and trial treatments..  Including IPI (Yervoy).
Michael Atkins, MD
Medical Oncologist, Deputy Director
Georgetown-Lombardi Comprehensive Cancer Center

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

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Update on Melanoma


In this interview, Dr. Grant-Kels discusses information presented at the American Academy of Dermatology (AAD) Summer Academy Meeting (July 31–August 4, 2013; New York, NY) regarding screening and therapy for melanoma.

PracticeUpdate: Dr. Grant-Kels, what is the most important new data concerning melanoma that you heard about at this year’s AAD summer meeting, and what do you think dermatologists should focus on?

Dr. Grant-Kels: First, I would like to credit to Dr. Allan Halpern from Memorial Sloan-Kettering Cancer Center because he very succinctly summarized the updates in melanoma, both for screening and therapy. He did an excellent job.1

Melanoma screening

Dr. Halpern first talked about screening. To introduce the topic, he showed that—unlike prostate, breast, colorectal, and cervical cancers, in which mortality rates are dropping—the incidence of and mortality from melanoma continue to rise. He then discussed whether screening actually helps. This has been a controversial topic, despite the fact one would logically assume that, if we screen patients’ skin, we would detect skin cancers earlier and, therefore, mortality would be reduced. Some of the studies have not been confirmatory. However, a recent study done in Europe showed, unequivocally, that there was a reduced incidence of mortality from melanoma when screening was introduced.2 Although screening can result in false positives and negatives, the bottom line is that screening patients’ skin does save lives.

Targeted therapies

Dr. Halpern then spoke about the most exciting area of melanoma, which are the new targeted therapies. There are two eras, if you will, for melanoma treatment: prior to 2011 and post 2011. Dr. Halpern recalled that, basically, only two approved treatments for metastatic melanoma existed prior to 2011. One was high-dose interleukin-2 and the other was a chemotherapy regimen known as DTIC, and both of these therapies had very low success rates and very high rates of side effects. Prior to 2011, metastatic melanoma was a devastating diagnosis.

Starting in 2011, improved understanding of the molecular pathways and the genetics involved in melanoma resulted in an improved understanding of the immunologic factors involved with its development and spread. The recognition that 50% of melanomas harbor oncogenic BRAF mutations at position V600was critical in the discovery of the drug vemurafenib. A significant number of patients with BRAF-mutated metastatic melanomas had a positive response to vemurafenib, which prolonged their lives. Unfortunately, the side effects from the drug were significant, even though most patients tolerated them relatively well. In particular, these patients developed others types of skin cancers, including squamous cell carcinomas and keratoacanthomas.

Finally, as recently as this year, the FDA approved two additional drugs after they were shown to be efficacious in patients with metastatic melanoma. One is dabrafenib, which is also a BRAF inhibitor, and the other is trametinib, which is a MEK inhibitor. So, it’s a very exciting time for those of us who take care of patients with metastatic melanomas because we now have three FDA-approved drugs that target specific sites in the molecular pathway.

Additionally, two other drugs are available to our patients with metastatic melanoma: ipilimumab, which was approved in 2011, and PDL1, which is still pending FDA approval. Ipilimumab is an immune stimulant and, therefore, helps the patient’s own immune system eradicate the melanoma. The anti-PDL1 antibody, which hopefully will be approved soon, has also been shown recently to result in tumor regression.3

We have now gone far beyond interleukin-2 and DTIC for patients with metastatic melanoma! I hope that, in the next update on melanoma therapy, these new drugs will be used in combination to reduce melanoma’s uncanny ability to outsmart new therapeutic options.

PracticeUpdate: Are dermatologists at the point where they are ordering genetic testing on patients with metastatic melanoma?

Dr. Grant-Kels: We do not routinely order serologic genetic testing on patients with melanoma, as is done in high-risk patients with breast cancer. Unlike high-risk patients who have mastectomies, we cannot remove someone’s skin. All we can do is monitor and check the skin frequently.

We do now routinely send tissue of patients with metastatic melanoma for testing to see if a BRAF mutation is present. That helps guide our choice of systemic therapy.

PracticeUpdate: Is there anything else new that dermatologists should be aware of relative to screening? And what about screening for patients who have already had melanomas removed?

Dr. Grant-Kels: Dermatologists have now embraced the use of the dermatoscope, which improves our diagnostic acumen. The other new advance is the FDA approval of some of the computer-assisted technologies to help us diagnose melanoma earlier. An example of this is MelaFind, a new technology now available in several dermatologic practices. In our department, this technology can help us decide which pigmented lesion to biopsy if we are unsure. Confocal microscopy is another exciting technology being used more frequently. We can use it in place of a skin biopsy as it allows us to see the skin on a cellular level. Hopefully, both of these new advances will help us diagnose skin cancers earlier and, ultimately, reduce the number of biopsies we need to perform.

PracticeUpdate: It is exciting that there will be a need for more screening of these patients since there will be more survivors than in the past.

Dr. Grant-Kels: Yes. Prior to 2011, most patients with metastatic melanoma died; so, this is very exciting! These new medications have revolutionized the treatment of melanoma!


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Anonymous's picture
Replies 0

READ it before you register or post.

It might be surprising what is collected and how it is used.

Even more surprising is the general and vague nature involved to delete registration.

Since this board is driven solely by user content and not the MRF, it is somewhat disconcerting of how they take ownership of us.

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Anonymous's picture
Replies 5
Last reply 11/1/2013 - 4:16pm
Replies by: Anonymous, Janner, DebbieH, sharon0803

just curious if any of you smart, wonderful folk know if one is 'locked in' with mitotic rate of initial lesion...can it slow down, or speed up in subsequent lesions/metastasis? Haven't seen anything in the lit/research I've perused over the last 2  + yrs...however, I know it is a prognostic indicator of recurrence...thanks very much


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Replies by: BrianP

Currently in Stge one trials:

LEE011 shows promising results in drug-resistant melanoma and drug-resistant breast cancer when tested in combination with other targeted therapies, say researchers.

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

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melissa ann's picture
Replies 5
Last reply 11/1/2013 - 9:10am
Replies by: Tina D, BrianP, Fen, GAngel, Phil S

I am so very sorry to say that I lost my best friend and sweetheart Saturday morning 10/26 at 2:00am. He is no longer in pain and his body is whole again in heaven. Peck taught me so much about faith and our God and it brings me peace to know that he is rejoicing in heaven. We are all very sad and missing him already. We had a beautiful day  with him in the hospital before he left us. He went with a smile and peace on his heart. He fought melanoma for 12 years and lived life as much as possible.  we have wonderful memories.   He is the most amazing husband , father, friend and physician. And I am so lucky to have called him my sweetheart. I appreciate all of you and wish nothing but healing for all.  Peace!

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team_maureen's picture
Replies 6
Last reply 11/1/2013 - 9:07am

Dear MPIP Community,

My family and I never posted on the page, but we read it every single day -- my baby sister, Maureen, battled melanoma for three years. She just passed away, at age 29, on Sunday. I wanted to take a minute to say thank you -- we don't know each other but we know what this terrible disease can do. My mom and I looked to you for advice and comfort -- you helped us fight this battle even though we never met. 

We made sure, in her official death notice, to say that she passed from Melanoma. We wanted people to know that this disease is not "just skin cancer" as we're heard from others. It's a beast. But Maureen is now at peace, and we will keep each of you in our hearts and prayers always. Warmest reagards,  Alexandra Abboud Miller


From Team Maureen facebook:

Our dearest Maureen passed away last night surrounded by her family, friends, and a love that could have burst the room. 

Our hearts are broken, but to have known her, and to have helped her fight this terrible disease, was a privilege and an honor. All of you, as part of Team Maureen, were such an important part of this journey. We can't thank you enough for that -- she always said that this page, your words and photos, helped her keep going when it would have been so easy to just stop fighting.

Maureen lived more in 29 years than most people do in a lifetime. She travelled the world, loved so deeply, and always lived her personal and work life with passion and determination. She was so much to so many people. 

So what do we do now? We cry as long as we need to. We remember her every time we hear a champagne cork pop. We eventually do what she's always done, what she would have us do now: "pour yourself a drink, put on some lipstick, and pull yourself together."

We love you, Maureen. Be at peace, our sweet Angel.


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Anonymous's picture
Replies 2
Last reply 11/1/2013 - 9:06am
Replies by: Anonymous, Janner

Just wondering if anyone has any idea re: if/when PD-1 and combo with ipi  is FDA approved, it will be indicated for Stage III and IV 'resected' patients? I elected to watch/wait (the latter category) instead of enroll in the ipi 3mg or interferon trial, fearful of getting interferon (I know, if one doesn't try, then one will NEVER know) and fear of messing up getting into ipi-PD-1 trial if...more likely when, I may need it...unsights?

Thank you all...

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My husband just returned home from Afghanistan. A few days after his arrival I noticed a black mole on the back of his neck and a suspicious spot on his leg. To make a long story short, he has a biopsy of the neck and was told it was melanoma. He went back and they made a large incision on the back of the neck. That biopsy can back "negative". He wasn't given a stage or depth.

The first time he went in he was told the spot on his leg looked fine. After the second biopsy of his neck, a full body check was performed. The doctor pointed it the leg spot and they scraped it off and sent it in for a biopsy (we are awaiting those results).

What is next? Other than skin protection, are there any other tests that should be performed to make sure it hasn't spread beyond that spot (to the lymph nodes, for example)?

He is acting like it is no big deal but I am slightly worried short the whole thing. Sadly, I don't have a lot of faith in many of the doctors I have seen on the military posts so I just want to make sure we have our bases covered.

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bkinman's picture
Replies 5
Last reply 10/31/2013 - 7:59pm

Had burning with urination this morning and then blood on tissue (some blood on tissue Sat night - thought it was due to relations with my husband), classic signs of UTI. Called oncologist and they sent me to Family Dr. for urine test. Second trip to restroom of the day, before going to Dr., there was blood in toilet after urination. Have had multiple UTI's in my 43 years, but never had blood in toilet. Went to Dr and test did show some infection (said small amount) and lots of blood. Of course I took to google and one of the signs of bladder cancer is gross hematuria (visible blood in urine). Only post I could find on here in reference to bladder cancer and symptoms she had blood in urine.

I called Onc and told him what test results were and he told me to take the 500 mg of Cipro for 2 days only and take dificid - due to 3 occurances of cdiff in last 3 months.

Now I am concerend that the mel could be in my bladder. Last scan was August 8th (or 9th, can't remember). It was clear except for spot on liver that was doing better. Nodule in lungs we are watching - no uptake on PET. Spots on spine are stable. 

Any thoughts. I go to Onc tomorrow, but I think it is just for Xgeva shot.  I will ask nurse if a ultrasound or other scan may be in order.

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MattF's picture
Replies 13
Last reply 10/31/2013 - 2:01pm
Replies by: Michelem, BrianP, Gene_S, POW, MattF, Anonymous, sailinjeffnk

I saw the Oncologist at UCLA today. Stage IIIB head and neck primary on ear with 2 nodes positive 9 months later, now parotidectomy and neck dissection....treatment options (and believe me I feel so blessed to HAVE options) are:

1.Radiation to head and neck


3.Yervoy v interferon Trial

4.Zelboraf v placebo Trial

Due to timing and 2 different care facilities I am unable to do the radiation and the other treatment together.

I'm leaning toward one but interested in any information or thoughts as I want to use the weekend to decide.

Thanks in advance Matt

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robbier's picture
Replies 2
Last reply 10/31/2013 - 1:39pm
Replies by: Michelem, Tina D

Hi:  I was diagnosed 2 years ago with Melanoma Cancer stage 3 A, one Dr says A, the other says B, anyway, last week on Oct 18th I went for my second pet scan of this year, at the present time I am being followed, still in remission, I was the one that opted to not to do chemo, the Dr said remission, and my thought was, you are saying remission, so I will just be followed.  That is what I am doing, even though I go for my test, and follow-up visits, its been hard.  But my beliefs in God, and good suppot has help me.  Mainly my belief in God, and the strength to walk this out.  I go back in Jan of 2014 for a follow up visit, and don't have to do another PET scan for 6 months.  So ya'll here, keep you chin up.  Be encouraged. 

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Michelem's picture
Replies 2
Last reply 10/31/2013 - 1:35pm
Replies by: Michelem, pd1gal

My husband had surgery last week - eight lymph glands removed a very deep melanoma from the bottom of his foot, which wound was then covered with skin harvested from his thigh. The harvest wound was covered with a mesh fabric and bandages. The doc tells us it is up to my husband to now remove that mesh - either by tearing it off all at once, or gradually peeling it off a tiny bit at a time. Either way it is painful.

The expectation is this will cause the wound to bleed, he is to wear shorts and keep it open to the air so it will heal over. But getting that mesh off will be painful and difficult - has anyone here got any thoughts on how best to manage?

We have other questions regarding next steps, but this is occupying our attention right now! Much thanks for any help or ideas. 


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