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
Anonymous
Replies 1
Last reply 7/3/2014 - 11:59am
Replies by: Janner

I have 3 large moles on my back, they have been there as long as I can remember so I assume I was born with them. However, one of them had started itching so I went to the Doctor's yesterday and he said that the itching was not a thing but that my moles were too dark and I had to get them removed.

He removed the itchy one yesterday and sent it for testing and I have to go back next week to get one of the others removed.

I have a band-aid over the removed one now but it is still kind of itchy and I don't know if this is because it was removed and is healing or what??

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CHD's picture
Replies 8
Last reply 7/5/2014 - 12:29pm

Hi,

As someone who's been dealing with vulvar melanoma since May of last year, told my prognosis is poor (though determined not to live my life in fear based on statistics), I sometimes wonder what the surgeon/oncologist mean when they say come in if you experience anything unusual.  I wonder this because my own melanoma was essentially asymptomatic and hidden so well, I only noticed a small amount of itching, and by that time it had already grown to 2 x 3 cm.  If your melanoma has metastasized, I was wondering today if you would mind sharing some of your experiences with this.  If the metastasis is internal, ARE there unusual symptoms? 

What stage was your original (primary) melanoma?  Were lymph nodes involved?  How long between the original diagnosis and the spread of the melanoma?

Most of all, I am wondering what kind of symptoms you had developed, if any, when the metastasis was discovered?  If internal, were you symptom-free?

If not, did you develop pain in a certain area?  Headaches, body aches, some other unusual symptoms?  

Or was it found on routine PET-CT screening?  Was it found accidentally on some other diagnostic test?

Based on my own experience, it is hard to imagine that if my melanoma progressed, I would have any recognizable symptoms at all, at least not right away.  Or would I?  It's kind of unnerving.

Cheri

 

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Hi,

I had a mole removed a month ago and was diagnosed with invasive superficial spreading malignant melanoma.  I went back a couple of week later for a wide local excision and I had the stiches out 2 weeks ago.  I have just managed to get a copy of my first pathology report and it says the following:

Ellipse of skin measuring 16x7mm with 4mm of underlying tissue.  On surface there is a slightly raised roughened pigmented area measuring 5x5mm

HISTOLOGY

The sections show skin with underlying adipose tissue and containing invasive/vertical growth phase superficial spreading malignant melanoma.

It is predominantly in situ but there is focal regression.  The small amount of invasive melanoma has a Breslow thickness of 0.4mm and infiltrates the dermis the Clark's level II.

No vascular invasion is seen.

There is a moderate tumour associated lymphoid infiltrate.

Dermal mitotic figures are not seen.

There is no surface ucleration and satellite lesions are not present.

The lesion appears completly excised with the nearest transverse margin at 2mm and the deep margin at 4.5mm from the invasive component.

I have a couple of questions and would appreciate it if anybody could help me:

1. Does Invasive and Vertical Growth Phase mean the same thing?

2. If it has had regression, does that mean it could have been deeper before my immune system attacked it and therefore could have already gone elsewhere?

3. It says the deep margins is clear by 4.5mm but it says only 4mm of underlying tissue was removed and if bresolow thickness 0.4mm  then that doest add up exactly.

4. Should I have had my glands checked as I havent and I will be getting them checked in 3 months time?

I may be looking in to this all too much but ive felt so unwell with asthma and stomach pains, it makes my imagination run away with me and I start wondering if its maybe something worse.

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/4/2014 - 9:36pm
Replies by: Anonymous, Ginger8888, BrianP, sweetaugust

After doing so much reading on melanoma after being diagnosed stage 1b- does your immune system truly help fight off melanoma?  It seems that there are so many contradictory statements.  Also- if your immune system is healthy- could it kill any random melanoma cells that may be floating around in your body still?   I'm just trying to grasp all of this.  

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Erin_Elizz's picture
Replies 9
Last reply 7/2/2014 - 12:04pm
Replies by: Erin_Elizz, sweetaugust, 5dives, Linny, Anonymous

Hi everybody, sorry for the long post but I would really appreciate some help

I'm having issues with my mentality and emotions right now and I could really use some help or suggestions for dealing with the situation.

A bit of background on me first, I am a twenty year old, happy go lucky university student who does not tan and has no family history of melanom but was diagnosed with a stage one, clark level 4, 1mm deep nodular melanoma on my arm last month.

Trailing a very difficult year abroad, health wise, my melanom diagnosis was just the icing on the cake. I had been studying in London since September 2013 and experienced my first food poisoning, lady issues, two sprained ankles, my first concussion, post concussion syndrome and a family death all within the nine months of my stay. In the last twp weeks of my stay, I was sent to the dermatologist by my GP and they did an immediate excision of the mole, stating that it could not wait for me to arrive back in the states. I was a bit shaken with the sudden in office surgery as I only had thirty minutes, an international phone call to my mother, and four shots of local anestetics to prepare before I was put onto the table with a knife at my arm, but after they finished the only concern I had was how I was going to pack while my arm was stiched up. At that time, the biopsy was the least of my concerns.

Fast forward two weeks later to June 9th, the day before I was sue to fly home: I was called into the office to pick up the slides in order to transport them back to my American doctors. I knew something was up because the doctor called in another doctor right before I was called into office. They gave me the diagnosis; nodular melanoma, and told me that if I were remaining in the UK they would want more surgery due to the clark level of my mole and the fact that at 1mm, I was right on the border of stage 1 and 2. Since I was going back to the US, however, it would be up to the home doctors whether or not we took these further steps.

Now, at this point, I did not even bat an eyelash. I'd done my research (History major in me), and I knew what everything they said meant. I was going to be fine. On June 10th I was on my flight home, and by the weekend I had already had three doctors appointments to review the results and schedule my surgery. (I also had a breast cancer scare, but those results thankfully came back clear, so that worry has now settled).

It is now almost a week after my surgery and it seems like everything has just decided to come crashing down on me. I don't know if it is the struggle of the recovery, the medicine, or the inactivity but all of a sudden my usual happy go luckiness has gone down the drain. When I speak about my situation to my family or boyfriend, I sound like I have a clear head and no worries, as I should at this moment. However, I find that I just can't smile like I used to.

While part of the reason may be because I've been taking the time to browse floppy hats and sun parasols in my down time, with the realization that everything had changed now, the other part of me is frustrated that I cannot seem to be logical about this. There are so many people with worse cases, who have reason to be scared yet are being so much stronger than I am managing to be at this moment. I was being strong, I was handling it well, but now, despite almost being in the clear, I am scared, angry, and so many other emotions that I cannot express to my family in order to keep them from worrying.

 

I wan to be me again, I want to be happy. I don't want to feel as if any self confidence I ever had has been squashed or that I'm all alone when I know I'm not. I want to be strong again. I just don't know how. Anyone have any suggestions?

 

Thank you!

Erin

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/9/2014 - 8:06am
Replies by: rick1981, HelenQLD

Hello-

After my father in law noticed a small lump on his side in spring of 2013 his GP doctor told him to watch it. Fast forward to January 2014 and he had the lump removed. It was a melanoma tumor the size of a softball. Scans later reviewed he had lung mets along with additional spots on his spine, bone, liver, splean, and abdomin. They did one round of Ipi before learning he had a BRAF mutation. He was put on the Mek combo and his LDH levels seemed to return to normal in April, may & June after being in the mid 700's. Two weeks ago he had an onc appointment and although his scans showed to be mostly stable he had two soft tissue spots grow on his right side and his LDH level was back to mid 700's. The onc started him on Ipi today, but his blood work showed almost a 900 LDH level. My concern now is he is already in so much pain (on morphine and delada) with it so far progressed I don't know if he will be around to see if the Ipi had worked. We have a great melanoma oncologist at a great facility I'm just concerned it's too late. 

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Anonymous's picture
Anonymous
Replies 0
After meeting with my dr- this test tested the genetic make-up of my specific melanoma tumor to check the likelihood of reoccurrence. It came back that mine is highly likely. Do any of you know of a test that is valid like this? I posted the link in my last post- it is skinmelanoma. do any of you know of a test like his that is valid? Because now I am scared to death. 
 
Thanks for all your insight.

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Subject: Viagra Melanoma Lawsuits
 
Viagra Melanoma Lawsuits

Viagra has been linked to nearly a doubling of melanoma, a deadly form of skin cancer, in men who used the erectile dysfunction medication, according to a recent study.

If you or a loved one suffered melanoma after using Viagra, you should contact a Viagra attorney for a free and confidential review of a potential Viagra lawsuit.

Kline & Specter, P.C., with more than 30 lawyers, several of whom are also highly skilled medical doctors, has the experience and expertise to litigate pharmaceutical injury cases. The firm was a key player in the $4.85 billion Vioxx settlement and has won large settlements in lawsuits involving medications.

Nearly 10,000 people die each year of melanomoa, with some 76,000 new cases diagnosed annually. Two-thirds of those who die are men.

The Viagra study, published in the Journal of the American Medical Association Internal Medicine, found that men who took Viagra were 84 percent more likely to develop melanoma. The study, whose subjects included 26,000 men with an average age of 65, showed an increase in melanoma among Viagra users even when the findings were adjusted to take into account other variables, such as family history of skin cancer and exposure to UV rays.

One author of the study, Dr. Abrar Qureshi, chairman of the dermatology department at Brown University’s medical school, was quoted as saying that Viagra may increase the risk of melanoma because it affects the same genetic pathway that allows skin cancer to become more invasive.

 

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

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/2/2014 - 9:22am
Replies by: SBeattie, BrianP

I erroneously scheduled an out of town vacation over a day when I would normally get my every two week infusion of well, we're not sure, in trail of ipi x4 plus nivo x4 then every two weeks; nivo only; ipi only followed by placebo...had to miss one infusion in April due to endocrinopathy side effect...trial folk say postponing upcoming infusion by one week won't affect response...anyone out there have any input? would you change vacation dates? scans have shown shrinkage in lung mets; fortunately no other organs involved...thanks so much to ALL OF YOU!!!

Sally

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Merck announced yesterday that pembro has officially been accepted into and started the approval process in the EU by their regulating body:
 
Merck’s Investigational Anti-PD-1 Antibody, Pembrolizumab, Under Regulatory Review in Europe for the Treatment of Advanced Melanoma - MarketWatch
 
 

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ScaredV's picture
Replies 11
Last reply 7/6/2014 - 7:50pm
Replies by: brittanyx, ScaredV, Anonymous, AmandaLivingston, Janner, Gene_S

Hello everyone,

I'm sad to be posting here, but hoping to find some support and answers.

My fiance was diagnosed with melanoma in April.  The lesion was 2x2cm and it was on his jawline.  It looked like a patch of eczema. Long story short, he had this spot on his face for 5 years, we were told it was a fungal infection, he took all sorts of creams for it, it didn't go away.  Finially a dermatologist decided to biopsy it and it turned out to be melanoma.  Since it was a large spot, only part of it was biopsied and we were told it was only .34mm.  

He had the WLE surgery preformed but they did not check lymph nodes at that time due to the fact that they thought it was only .34mm.  After the surgery, we found out at it's deepest point it was actually 1.23mm with a mitotic rate of 2 (this was only at the deepest point,  there were all different depths and some areas were in situ).  The surgery was a success and the margins were clear.  The surgeon who did the WLE did not want to test his lymph nodes but his dermatologist has decided he does want to test the lymph nodes so we will be meeting with a second surgeon in the next few weeks.  

This whole experience has caused extreme anxiety for me.  I am so worried about him and just want him to be ok.  I do have a few questions that I'm hoping you all can help me with.

The first question is, why does one doctor want to go ahead and test the lymph nodes and one does not? What is the best course of action to take now?  I realize that because he already had surgery, the lymph node testing is not as accurate.  

Are there any risks we should know about when testing the lymph nodes?  

My final and most important question is considering this new information and the location of the melanoma, what are the chances that this has spread to the lymph nodes?  I am so terrified of hearing the results of this and I am unsure what the chances are that this may have spread.  I realize every case is different but if anyone has any numbers or experiences they could share, I would greatly appreciate it.

Thank you so much

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jualonso's picture
Replies 2
Last reply 7/3/2014 - 10:45am
Replies by: jualonso, leslieann79

Hi guys,

I have read in many places that is possible that fail in inhibitors could affect to response in inmunotheraphys, what is your opinion?

Did someone stop from inhibitors once he reduce tumors, go into inmunotheraphy and if failed, back again to braf/mek with succes?

 

Thanks to all of you.

All togheter we will beat the Beast

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/1/2014 - 2:13pm
Replies by: Ninniditti, Anonymous
Anonymous's picture
Anonymous
Replies 0

PUBLIC RELEASE DATE:

27-Jun-2014

 Contact: Nuria Noriega
nnoriega@cnio.es
Centro Nacional de Investigaciones Oncologicas (CNIO)

CNIO researchers discover more than 40 melanoma-specific genes that determine aggressiveness

The results of the study could help to determine the development of metastasis in patients suffering from the disease

 
Researchers from the Spanish National Cancer Research Centre (CNIO) have discovered more than 40 genes that predict the level of aggressiveness of melanoma and that distinguish it from other cancers with a poor prognosis. The discovery, published in Cancer Cell, will help to identify unique aspects of melanoma that could contribute to determine the risk of developing metastasis in patients with this disease. This study is relevant because it explains why a drug, also described by CNIO, is being used to selectively attack the melanoma tumour cells. Melanoma is one of the worst, most metastatic cancers known today.

What is the function of these genes? Strangely, the factors that are increased in melanoma share a common mechanism: the formation of vesicles called endosomes.

Endosomes are machinery that tumour cells, via a process called endocytosis, can use to incorporate components into their environment and obtain energy by degrading them via autodigestion or autophagy. Autophagy is also used for self-cleaning to eliminate other proteins as well as damaged or unneeded cellular components.

Among all the genes that control endocytosis, the authors of the study focused specifically on one, called RAB7; this gene is highly expressed in melanoma cells. After more than six years of research, the research team led by María Soengas, head of CNIO's Melanoma Group, showed that RAB7 acts as an orchestra director, determining the fate of melanoma cells: at high concentrations of RAB7, cellular autodigestion is very active, and this allows tumour cells to obtain energy, prevent the accumulation of toxic components and thus divide and proliferate; when RAB7 is reduced, cells use endosomes to recycle metastatic proteins, favouring their dispersal throughout the body.

Defining "the key to the fate of the tumour cell", as Soengas says, is just one of many new aspects of melanoma uncovered by this study. "Finding which mechanisms determine why melanoma is so aggressive is very complex because more than 80,000 mutations have been described for this tumour", says Direna-Alonso Curbelo, the article's first author.

POTENTIAL CLINICAL APPLICATIONS
 
This study is also relevant for clinical work. One application is the prognosis of the melanoma: the authors show in tumour biopsies that the amount of RAB7 in a cutaneous tumour defines the risk of developing metastasis. "This study opens avenues for the potential use of proteins that control vesicles and regulate autophagy as novel markers of patient survival", says Soengas.

Furthermore, these results help to understand the mechanism of action of a compound that, as the group discovered in 2009, is lethal in melanoma cells as well as in other tumour cells. This RNA-based nanoparticle compound kills the cells by acting on the formation of vesicles.

"We knew how our nanoparticles act inside tumour cells, but not how they selectively incorporate inside the cells", says Soengas. The size of these molecules requires cells to form endosomes in order to be able to trap the compound. This study demonstrates that this endosome formation (via RAB7) is very active in tumour cells but not in normal cells. Normal cells, therefore, do not incorporate RNA nanoparticles, reducing the risk of toxic effects.

The work published in Cancer Cell complements previous research efforts from the CNIO Melanoma Group, which could lead to the development of novel drugs that selectively target the mechanism of cell autodigestion as a potential therapeutic strategy.

MULTIDISCIPLINARY APPROACH
 
This has been a multidisciplinary study in which many new computational techniques have been used to process large amounts of genomic data. CNIO's Bioinformatics Unit has been key in comparing 900 cell lines derived from up to 35 tumour types in order to identify unique aspects of melanoma. On the other hand, CNIO's Molecular Imaging Unit has made it possible to analyse vesicle formation mechanisms at high resolution and in real-time.

The study's authors have worked alongside researchers from the Memorial Sloan Kettering Cancer Center in New York, as well as with dermatologists and pathologists from the hospital 12 de Octubre in Madrid, and experts in the field of melanoma diagnosis and treatment.

This work has been funded by the Ministry of Economy and Competitiveness, the National Institute of Health Carlos III, the Melanoma Research Foundation, the American Cancer Society, the Fundación Mutua Madrileña and the Fundación "La Caixa".

 

Reference article:

Alonso-Curbelo et al., RAB7 Controls Melanoma Progression by Exploiting a Lineage-Specific Wiring of the Endo- lysosomal Pathway, Cancer Cell (2014)

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