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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arthurjedi007's picture
Replies 2
Last reply 11/6/2013 - 4:38pm
Replies by: arthurjedi007, Mat

I've been on Zelboraf for 8 weeks. The full dose 8 pills a day. I just had my first PET scan since starting it and everything is pretty much the same which is lots of cancer in my bones of either the same or a little worse intensity. Anyone else experience this bad Zelboraf result? My doctor is trying to figure out what to do next. According to the biopsy of my t10 vertebrae I'm BRAF V600E. The first PET scan done shortly after starting radiation showed cancer in several bones but nowhere else. They did pallative radiation of that area which the second PET scan showed a 20% shrinkage but growth in other tumors during those 6 weeks that weren't part of the radiation but still the same bones and nowhere else. Then they put me on zelboraf but this 3rd PET scan has no shrinkage and a little growth plus 2 skin cancer spots. My white blood cells were great everywhere except the one for the bones. Now they are less everywhere. The doctor was quite surprised with the PET results because this only happens like 10% of the time he said. Any advice would be appreciated on how to best beat this cancer. I believe they will probably start me on ipilimumab or maybe the trial that combines that with nivolumab since my doctor is part of that. I'm starting to be concerned if their biopsy was correct. Anyone have a biopsy diagnosed melanoma but it is some other type of cancer? As far as Zelboraf symptoms I've had about a dozen or more. The most noticable is the rash from neck to ankles which is slowly going away. Also a couple cancer spots appeared on my skin and PET scan although I've stayed mostly out of the sun and had the uv clothing and stuff on. Not sure what type they are but one is believe to be the squamish. Also my hemroids have starting bleeding way more than ever and may be more to it so getting a colonoscopy. Also my left side hurts quite a lot but nothing showed on the PET/CT scan. Dunno what else to say. I'm quite at a loss expecting the good results the doctor expected only to have gone through all this with no shrinkage.

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Hi all,

I am a melanoma stage 3 survivor. I started a cancer awareness company called WEAR AWARENESS to give back to those that are still fighting their cancer. Proceeds of every shirt sold goes to current cancer fighters for everyday expenses not covered by insurance. Things like co-pays, traveling expenses for long distance doctor appointments, etc. 

If you or someone you know is currently battling melanoma, go to www.wear-awareness.com and NOMINATE them. We need cancer fighters to give back to, and are excited to do so!

We have a melanoma designed t-shirt that is really cool. Our shirts are soft and durable. Check it out www.wear-awareness.com Below is a brief story of my melanoma, but you can find a longer version on my website. 

I was diagnosed a week after I graduated from college. I was 22. I had an immediate surgery to remove my melanoma which was on my back. The doctors biopsied a few lymph nodes in my right groin. I was devastated when they came back postive with cancer. I then had a surgery to remove all lymph nodes in my right groin. They had to cut a leg muscle and move it, then reattach it to reach all of my nodes. This caused my to not be able to walk for a month. I then did interferon for a month. I was the few 10 percent that lost over half of my hair from this treatment. I then decided not to continue with the 11 month treatment program.

THANKFULLY I have been cancer free for 20 months.

Thanks for reading! Prayers go out to everyone going through melanoma. I have been there...you will get through it and be stronger for that!

Casie 

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Michelem's picture
Replies 5
Last reply 11/5/2013 - 12:35pm
Replies by: Michelem, Zan, DonnaK, Cooper

Our surgical oncologist has just referred us to a medical oncologist - Dr. Vijay Suhag who is based at Sutter Roseville.  He is board certified in medical oncology, and the bionotes I can find list several types of cancer he treats, but make no specific reference to melanoma.

I did ask the surgical oncologist if he would be referring us to someone who specializes in melanoma and he said yes, "this is who I work with all the time".

I see a lot of traffic here about the importance of working with someone who specializes in melanoma, and I would appreciate your thoughts.  My husband is Stage IIIB. 

MicheleM

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Replies by: LuckyMan51, awillett1991, Anonymous

So yesterday I received bad news from my oncologist.  I was first diagnosed with a melanoma on my leg in June of 2011.  It was removed with no lymphnode removal and I was great for 2 years.  In June of this year - the melanoma returned in the same spot - this time at a stage IV. I have a tumor on my leg and tiny tumors in my lungs and abdomen.  I was placed on a clinical trial that uses Ipi - Yervoy and Novumulab? PD1.  I just finished the Yervoy and went for scans and there is now a spot on my brain.  The CT scans showed shrinkage in the other tumors - but the spot on the brain could disqualify me from the trial.  If the Neurosurgeon thinks it will help - they are planning some type of radiology to target the spot on my brain.  Has anyone else gone through this?  I need some support.  I felt like I was doing everything right - and now this.  Thanks.

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Germer's picture
Replies 3
Last reply 11/5/2013 - 9:27am
Replies by: Germer, Janner, Anonymous

I was reading on BBC about a blood test that could potentialy detect the spread of Melanoma by looking for TFP12 markers. Has anyone heard of this or know anything about it? Does anyone know when it might be available either in trial or in the mainstream?

http://www.bbc.co.uk/news/health-24770207

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http://www.sciencedaily.com/releases/2013/11/131104112406.htm

Subtypes of Malignant Melanoma Invisible Yet Fatal

Nov. 4, 2013 — Scientists of the University of Ulm and Columbia University have discovered a diagnostic algorithm to distinguish two subtypes of malignant melanoma. Desmoplastic and spindle cell melanoma may look alike -- they often resemble little scars or retractions of the skin -- but differ in prognosis and therapeutic options. Sometimes even routine histology is not decisive because of partly overlapping features. The new algorithm, a combination of the biomarkers Melan A and trichrome, allows a diagnostic distinction of the subtypes.

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

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Anonymous's picture
Anonymous
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 effects...it 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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http://www.rttnews.com/2210863/new-biomarker-could-aid-in-melanoma-treat...

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

https://www.youtube.com/watch?v=lL2QC3RQwXk

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
Anonymous
Replies 0

READ it before you register or post.

http://www.melanoma.org/privacy-policy

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
Anonymous
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

Sally

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Replies by: BrianP

Currently in Stge one trials:

http://www.medindia.net/news/new-drug-proves-effective-in-drug-resistant-breast-cancer-and-melanoma-126683-1.htm#ixzz2jM1A0g6D

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: https://www.facebook.com/TeamMaureenAbboud

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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