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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EricNJill's picture
Replies 17
Last reply 12/12/2012 - 11:03am

I just wanted to update you.  After being denied by the insurance for the Yervoy, Eric's Oncologist had us submit assistance paperwork through Bristol Myers.  Bristol Myers contacted United Health Care and got them to approve the coverage of the drug!

So don't give up, even if the insurance says they will not cover the drug Bristol Myers will work with your insurance company to get it covered.

Good Luck, JillNEric in OH

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I believe ONCOVEX uses GM-CSF and a dormant strain of the herpes simplex virus and is in Phase III Clinical trials.........Hawaii Bob How Absent Reoviruses Kill Cancer

ScienceDaily (Feb. 21, 2011) — Reoviruses are successfully being used in clinical trials to treat patients with cancer. Not only does the virus cause cancer cells to die, it also forces them to release pro-inflammatory chemokines and cytokines, which in turn causes the patient's immune system to attack the disease. New research published by BioMed Central's open access journal Molecular Cancer shows that reovirus infected cancer cells secrete proteins which, even when isolated, result in the death of cancer cells.

Normal human cells are protected from reovirus infection by a protein called PKR. However a cellular signalling protein (Ras), which can block PKR activity, is abnormally activated in many types of cancer and provides a window of opportunity for reovirus infection. A multi-centre study, involving labs in the UK and America, collected growth media from reovirus infected melanoma cells. The researchers showed that this media contained a range of small pro-inflammatory proteins, including an interleukin (IL-8) and Type 1 Interferon (INF-β), which recruited and activated white blood cells, specifically Natural Killer (NK) cells, dendritic cells (DC) and anti melanoma cytotoxic T cells (CTL).

Whilst the exact details behind this mode of action of cell signalling in response to viral infection are unclear, the release of cytokines was dependent on both 'inactive' PKR and a specific nuclear factor (NF-κβ). According to Prof Alan Melcher, from Leeds Institute of Molecular Medicine, "Bystander immune-mediated therapy may well be an important component in the treatment of cancer by reoviruses, and may have potential in treating cancer even in the absence of live virus."

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ScienceDaily (Mar. 24, 2011) — A breakthrough discovery by the University of East Anglia (UEA) and Children's Hospital Boston promises an effective new treatment for one of the deadliest forms of cancer.

Reporting in the March 24 edition (front cover story) of the journal Nature, the researchers found that leflunomide -- a drug commonly used to treat rheumatoid arthritis -- also inhibits the growth of malignant melanoma.

Melanoma is a cancer of the pigment cells in our skin. It is the most aggressive form of skin cancer and, unlike most other cancers, incidence of the disease is increasing. More than 10,000 patients in the UK are diagnosed with melanoma each year. If caught early, surgery can be used to safely remove the tumour but the chances of survival for patients whose tumour is already spreading are very low. Around 2000 people a year in the UK die from malignant melanoma because the cancer has returned after being removed surgically.

UEA scientists Dr Grant Wheeler and Dr Matt Tomlinson conducted a rigorous screen of thousands of compounds, looking for those that affect the development of pigment cells in tadpoles. They identified a number of compounds that affected pigment cell development and have now shown with their US collaborators at Children's Hospital Boston that leflunomide significantly restricts tumour growth in mouse models.

And when leflunomide is used in combination with PLX4720, a promising new melanoma therapy currently undergoing clinical trials, the effect was even more powerful -- leading to almost complete block of tumour growth.

The next stage is for clinical trials to be conducted into the use of leflunomide to fight melanoma. Because leflunomide is already licensed to treat arthritis, this process should be faster than usual and a new treatment for melanoma could be available within around five years.

"This is a really exciting discovery -- making use of an existing drug specifically to target melanoma," said Dr Grant Wheeler, of UEA's School of Biological Sciences.

"Deaths from melanoma skin cancer are increasing and there is a desparate need for new, more effective treatments. We are very optimistic that this research will lead to novel treatments for melanoma tumours which, working alongside other therapies, will help to stop them progressing."

The novel work, which was partly funded by the Biotechnology and Biological Sciences Research Council (BBSRC), highlights the strength of carrying out large screens of compounds in developmental model systems such as the Xenopus tadpole used at UEA and the zebrafish used at Childrens Hospital Boston. The hope is that this approach will lead to the discovery of further compounds to treat different diseases in the future.

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Janner's picture
Replies 17
Last reply 4/18/2011 - 5:53pm

In April 1992, I was diagnosed with a .58mm lesion.  (Stage IB under today's staging system).  Pre-internet days and no books on melanoma at my library.  It was incredibly difficult to find anything in print, and what was written was incredibly negative.  Mostly geared toward higher stages and low survival rates.  The internet and sites like this have become an incredible tool if you don't let them freak you out.  19 years later (and with 2 more primaries in 2000 and 2001), I'm still stage IB.

This place can be scary for the newly diagnosed - especially those who are early stage.  Most stage 0 or 1's move on and don't stay to post here as their anxiety wanes.  So I'm posting as one of those long time stage I people who is still stage I after MANY years.  Heck, it's hard to remember my life without melanoma.

Best wishes to all,



1992 - ..58mm, Clark Level II, 1 mitosis

2000 - in situ

2001 - .88mm, Clark Level III, 1 mitosis

Tested positive for melanoma genetic defect, CDKN2A

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Hi there.

I am starting on the MDX-1106 trial next week. I just wondered if anyone on the boards is part of this trial? I'm hearing really good things about it and it sounds like the side effects are pretty small. I think doctors have a tendency to play down the side effects sometimes. So, I was wondering what other people have experienced with this drug.



Be kind, for everyone is fighting a great battle. -Plato

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premedy's picture
Replies 2
Last reply 4/14/2011 - 10:23pm
Replies by: MichaelFL

Just had a cat scan done with the following results

 A new .4cm nodule in the left lower lobe is noted.  New focal patchy and ground glass opacities in the right lung are noted.


Spleen - Mild splenomegaly is increased measuring 14.2 cm in craniocaudal dimension, previously 12.7cm.

Abdominal lymph nodes are increased in size and number.  Subcentimeter mesenteric lymph nodes are also increased in size and number


Has anyone seen anything like this with the lungs.  I've never heard the term patchy ground glass opacities but it doesn't sound good.  Has anyone dealt with enlarged abdominal nodes?


thanks in advance.

"without the bitter the sweet ain't so sweet"

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chatrbox424's picture
Replies 4
Last reply 4/14/2011 - 7:06pm

In August of 2010 I found out I had melanoma and was a month pregnant one day apart so needless to say its been a CRAZY 9 months as it is for anyone facing this diagnosis!!  My thoughts and prayers first off to everyone on here fighting this ugly disease!!!  I've loved reading all the positive attitudes and stories though, its very uplifting!!!! :)  

To get to my first dermatologist whom I've since left due to feelings of discomfort on my part.....called and told me my results over the phone while I was on vacation.  Upon returning from vacation I immediately had an appointment in which he told me that he got everything with the punch biopsy but felt it necessary to take a wide excision (1cm all the way around).  He also told me the melanoma was .5mm (I'm assuming he meant depth but not sure) and was a Stage1 with a great prognosis and extremely low chances of recurrence....all great news considering the diagnosis at hand.  He only wanted to see me every six months and wasn't very thorough with the full body check and privacy was an issue in his office (at least for me).  So I sought out a clinic that seemed to better suit my needs/wants that said he did the right thing with the wide excision that they would have handled it the same way so that was comforting.  However they will see me every three months along with yearly liver function tests, lung x-rays and eye exams!!  

Upon them receiving my records from the first dermatologist I asked for more specifics on my diagnosis such as mitosis, ulceration, etc. as I know these things have an effect on she showed me the report in black and white and it plainly said the melanoma was in situ, unulcerated, and 0 mitosis....which I know are all wonderful news....but I'm just confused by whats written in black and white and what my first dermatologist told me....why the difference in diagnosis????  Just made me wonder...not sure if its anything to be concerned about or not so any input would be appreciated.

Thanks A

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Anonymous's picture
Replies 9
Last reply 4/16/2011 - 8:15am


I would like feedback from people experienced with Melanoma staging based on the AJCC staging charts, and what each persons Doctors have told them. I am Specifically interested in stage IIIC but please feel free to add anything, no matter what your stage.


Acording to the "staging charts" a person who is a stage IIIC has what is considered advanced melanoma, and with a few variables, the five year  "prognosis" varies from 15 to 29 percent chance of survival.

Is this accurate?

If you have stage III melanoma, and the risk of recurrance is high in the first 5 years, are your chances of survival greater if you get past the 5 year mark?

Is there any way to know where the melanoma will recurr (as in what part of the body)?

Are you in remission if your cancer has been removed?

When are you cured from Melanoma?

What can a stage III person do to prevent Melanoma from returning?

If the "prognosis" for stage III melanoma is so severe, what is the average amount of time until recurrance?


Thank you to anyone who helps with these questions.

I realize some of them may seem dumb, but I am trying to understand where someone stands based on the statistics.

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dian in spokane's picture
Replies 8
Last reply 4/16/2011 - 10:19am

I loved Charlie's suggestion for hosted chats, and although no one at the MRF has not answered that post yet, I think we can start it ourselves if some of the long time members just post chat times.

With that in mind, I will be in the chat room today (april14th)at  4:30 Pacific Daylight time, and again tomorrow morning at 8:30 am Pacific. Since someone mentioned that the evening chats are too late for them, I thought I'd try some morning ones.

Anyone can join in chat, but one IS required to register and log in. Don't let this stop you, it's a very simple procedure. Just go up to the top of the page on the right, and click on the Log In button. You need to choose a name to use (which can be a nickname or your choice, it need not be your real name) and an email address. Registering and logging in aids you in reading the bulletin board as well. If you are logged in, the board will show you which 'threads' have new replies which you have not read. You are always given the choice of posting anonymously, so even if you register and have an official 'name', you do not have to use it for your posts. But you do need it to get into the chat room

When I first found this site, one of the first things I did was go to the chatroom. I can't tell you how much comfort it gave me to talk to others who actually understood my fears, and could answer questions for me about Interferon. I spent many evenings there while on interferon, with Charlie and Barth and the ladies making me laugh so hard. I was so sad back then about the return of my melanoma that I was surprised I could laugh about such silly things, but it did me so much good to feel 'normal'

I hope we can do that for some of you.

Dian in spokane

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Anonymous's picture
Replies 3
Last reply 4/23/2011 - 6:01pm
Replies by: boot2aboot, Anonymous

anyone ever get multiple white spots( tiny and raised). I have them on my legs more recently. don't know if it has anything to do with my mel which was on my face.could be aging process (i am 66). . or reaction to vitamins. going to see dermatologist next week

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Anonymous's picture
Replies 7
Last reply 4/14/2011 - 7:22pm
Replies by: Anonymous, Janner, MichaelFL

Hi everyone

Sorry to bother with these seemingly petty issues (is there somewhere else I should be posting?)

I have posted lately about a few things: my toe light tan freckle that was moderately atypical, my sister's UNchanged mole that was severely atypical and the fact that I have hundreds of moles, many weird looking, many normal looking. I've had everything from benign- to mm in-situ. Sister also had in-situ. We have atypical mole syndrome.

So I have two issues: I am scared out of my mind that something on me is melanoma whether it has changed or not. Whether it is innocent looking or not. Clearly there are no rules with this. I have 5 moles (biggest might be 5mm, others smaller) on my neck. They haven't changed but look slightly atypical. Well, somehow i googled something and read that "Head and Neck Melanomas have Poorer Prognosis" -- twice as bad, Would it be crazy to get 5 moles off my neck for peace of mind? Has anyone heard of this or had melanoma on their neck or scalp? OR do any of you have moles on your neck? Is this a normal spot?

This leads me to my next problem: how do you handle this anxiety? I have been great about it for years (been dealing with this for 20++ years) but as you can see I am in the midst of a panic about it. I dont see the derm for 3 weeks and I can barely keep track of what I want off!
(the little dark one that always bothers me, the bigger slightly atypical ones on my neck? the slightly changed on neck, changed one since pregnancy, but not in the last two years) It goes on and on! She won't remove them all I'm sure, but where do I draw the line? The whole "Change" thing has been thrown out the window with my sister's severely atypical...

Other times I think why am I leaving anything questionable when it would be melanoma. Why not get 10 off and be done? (until my next scare!)


Any advice on how to balance anxiety and being vigilant w/out going overboard?

OR is is smarter to just get the 10 scariest ones off in the next few months and have peace of mind



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adgesoph's picture
Replies 3
Last reply 4/14/2011 - 10:25am
Replies by: amberhulin, deffk1105, Cate

My dad went to get scanned after only being on the braf trial for brain mets at Vanderbilt and all of his tumors grew- he has some in his lungs, brain, neck and pelvis.  I'm just so surprised that he didn't respond at all.  He was feeling so much better a week after he started.  How can that be?  

So now they've admitted him to the hospital because his brain mets have grown substantially and caused him to have weakness on the left side of his body (this all happened within the last 2 days and thank God he had just arrived at Vandy because the doctors said he could've died at any minute with all the pressure from the tumors in his brain.  He is getting steroids now for the brain mets and they are deciding on gamma knife or wbr-starting tomorrow.  Obviously he's out of the trial.   Just sucks.  We were so excited when he finally got in it and it didn't even work.  

So after the brain is taken care of it's either ipi (if he has time to wait for it to work) or another trial.  Thankfully Vandy has several.  He failed interferon, IL-2 and now braf.  

I'm just really upset for him right now.

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Anonymous's picture
Replies 3
Last reply 4/13/2011 - 11:12pm
Replies by: lhaley, alicia, Fen



This is the first time that I have posted. I am  stage 3 unresectable.

I am on NO treatment currently & have had not treatment just surgery.

My White blood count currently is 4.3 on the lower side of the range (3.8 -10.8). My lymphocytes count currently is at 486.Range for Absolute lymphocytes(850-3900)

 Four weeks ago,  my white blood count was at 6.2 and Absolute lymphocytes at 639. 

My Absolute lymphocytes (fighter cancer cells) have been steadily going down.

Can anyone tell me what is the significance of this drop. What does low absolute lymphocyctes mean to my cancer & overall heealth??

I know that WBC and Absolute lymphocytes is part of my immune system but is there anything that I can do to improve  the Absolute lymphocytes. Is this a dump question???

Thank you for your response & help.


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EricNJill's picture
Replies 14
Last reply 4/21/2011 - 10:17pm

Eric's Oncologist told him he doesn't have 30 days to wait for the washout period to get into another clinical trial because his cancer is spreading fast.  He said that Eric needs to start Yervoy immediately, but Eric's insurance does not cover the cost of the drug.  We were told we could appeal but Eric's Oncologist said they aren't having any luck with getting the insurance companies to cover Yervoy.  He has had other patients running into this problem.  Has anyone here had any luck with assitance?

JillNEric in OH

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archer's picture
Replies 11
Last reply 4/15/2011 - 12:18pm

I want to thank all of you that said, "run, don't walk to a specialist".  We did just that yesterday and what a world of difference compared to our first visit with an oncologist.  We even had someone on here provide her email address because she goes to the same doctor and her statements about this doctor were correct.  We left feeling good about our decision.

Tomorrow morning, my wife is scheduled for her PET scan, meeting with a surgeon and then the specialist.  Talk about making things happen! We are grateful to all of you for this advice as well as all the other advice you have graciously shared.  It has helped us get get a direction with all this mess.  Tomorrow will be 14 days from the diagnosis.  I can say that I actually slept 7 hours last night.  That is the first time in the two week period.  I know you guys will understand what I mean by that but hopefully that is the sign of good things to come.  

Now, our prayers, thoughts etc are directed toward a clear negative scan tomorrow.  That would be a gift.

Again, I can't thank all of you enough for your help.  Last week was disaster, a blur and I was a notch above a zombie (at least when alone) but this week is a tad better thanks to a lot of people such as yourself praying and sharing.  

I will keep in touch.

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