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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emagdnim83's picture
Replies 9
Last reply 1/14/2016 - 8:20am

Just sharing the end of our story.

My father passed away on 01-01-2016 after battling stage 4 melanomas for 8 months. After being diagnosed with mutliple bleeding brain mets early October we had 2 really good months (compared to the time with zelboraf) with hospice care at home but without further cancer treatment (he had serious heart issues after one single dose of nivolumab). He didn't have any permanent cognitive issues after the bleeding had stopped and dexamethasone took care of the swelling. Doctors were really suprised how good he recovered. So he was able to enjoy all meals, drinks, could walk a bit but we all knew it wouldn't last forever. Then, some days before christmas he developed hemoptysis and was really short of breath the whole time. To fight his fatigue he received a blood transfusion which unfortunately didn't help anything. He didn't suffer great pain thanks to low dose morphin drips and after he became bedritten he got a morphin pump together with lorazepam. Final days were really tough for us all - the mechanical-like breathing in the last few hours will haunt me forever.

Now, i am not sure about hospice care only. It really was a great help and he could die at home, surrounded by his family. He didn't have to suffer pain i think. But, for the last 2 days or so i don't know because he couldn't answer any more. Doctors assured us he wouldn't have to endure pain with his medication.

On the other hand, with all the great news about new treatments all around it was especially hard for me not to do anything and i think i will forever think about the "what if..." and "maybe we should've continued nivolumab". Sure, his quality of life with zelboraf was really bad and even nivolumab knocked him down with fatigue, loss of appetite and heart issues... maybe even the bleeding was caused by it? We don't know for sure.

Thinking of Artie. He replied a lot to my posts and gave advice how my father could maybe make it until christmas. Artie literally tried everything and had to fight a lot of side effects and pain. He lost the fight, too. This reminds me that there still isn't a cure for lots of people even with all the good news about immunotherapy all over the media...

So, for all late Stage 4 Warriors out there: please write down your will how you want to be treated when you can't decide for yourself any more, for example when brain mets hit really fast or suddenly begin to bleed. Just in case. It is super hard for relatives when they have to decide wether to continue treatments or going into hospice care. 

Thanks everyone around here for giving good advices and sharing lots of information and even good news in some cases. Its good to hear that new treatments help more and more people fighting this ugly, horrible disease. Keep up the fight. 

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Anonymous's picture
Replies 1
Last reply 1/14/2016 - 6:02am
Replies by: Anonymous
Asc08's picture
Replies 3
Last reply 1/13/2016 - 9:40pm
Replies by: Asc08, Fen

hi all - new to this board so please forgive me if I am doing this wrong. My dad was diagnosed with stage 2c back in September 2013 on his head. He had surgery and a years worth of interferon therapy. All was well until a few months ago a new mass appeared on his pet scan behind his ear. He just had a neck dissection to remove the mass and lymph nodes. 6 came back with melanoma out of 61. They are recommending radiation pending another pet scan in a month to make sure nothing else shows up. 

Wondering if anyone here has had radiation to the neck area? Truthfully I'm not sure what I'm looking for other than trying to see if anyone can share a similar experience. 

thank you


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Rlukas79's picture
Replies 1
Last reply 1/13/2016 - 8:23pm
Replies by: casagrayson

First off I would like to express how tough everyone of you on this board are.  Whether it's dealing with this disease in your body or caring for someone that has it or have lost someone to this disease.

I can start by saying I'm lucky.  My spot that was removed was indeed a mole.  It came back with Severe Atypia.  Here is the entire pathology report.

Pathology report reads:
Junctional melanocytic nevus with elongated. fused rete ridges and concentric lamellar fibrosis within the underlying papillary dermis.
A mild superficial dermal lymphocytic infiltrate is identified.  Cytologic atypia is severe.
The whole path report reads:
The lesion appears to be completely excised, but is close 
to a lateral (peripheral) inked edge.  Conservative
re-excision is recommended to ensure all atypical melanocytes are removed.
Immunohistochemical staining was performed using Melan-A (A specific marker of Melanocytes)
to ascertain the degree of melanocytic hyperplasia and presence of intraepidermal melanocytes.  Aprropriate postive and negative controls were 
performed.  Melan-A primarily stained lentiginous cells along the elongated rete with occasional pagtoid cells.  These findings support the above histological diagnosis.
I guess this was an interesting mole.
So the Derm says the prior damage (nair chemical burn and ruptured the mole pretty good andTook a few months to heal) definitely could have played into the architectural and cytologic atypia but the problem is, it doesnt matter.  Understandably when a cell is atypical it's atypical, it doesn't matter how it got that way.  It could have been a normal mole, could have been a mildly atypical mole etc.  Regardless iIt's severe and needs to come out.  Which I 100% agreed with.  Comes out next Wednesday.  He explained When you have a severe dysplasic mole it gets treated like Melanoma in Situ - 5mm margins. 
Also said it may have never turned into melanoma but being severe it has a greater chance than just being mild or moderate.
Told me there is no need to come for bi-yearly visits.  My yearly visits are all I need and to just to a self examination maybe once a month and he said if anything should seem outof the ordinary or if I'm unsure just make an appointment to get in.  He says way to many people make the mistake of thinking something isnt a problem and may be embarrased to come get it checked out.  He would rather tell you it's nothing right away than a serious problem several months down the road.

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RifClitz's picture
Replies 20
Last reply 1/13/2016 - 7:12pm

Hi, Today the doctor told us that my father has Melanoma. They removed a birthmark from the back of his hip and it was positive.... The details are as follows:


Thikness: 1.1 mm

Clark Level : III

Nodular and superficial spreading

Involving Lateral margin


Mitosis: more than 4/mm2.

The doctor suggested another appt to see whether lymph nodes were penetrated.


I have a few questions. Given all this, what's the likehood that the lymph nodes were penetrated. Also, what do you think is the stage??? Please, please help!!!


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jodaro's picture
Replies 2
Last reply 1/13/2016 - 6:37pm
Replies by: jodaro, AshleyS

Hi All,

Quick backstory, I'm a 42 year old male, no family or personal history of cancer. I have dark hair but blue eyes so I'm probably considered fair skinned. I'm definitely someone who enjoys being outside, and while I wouldn't consider myself a sun worshipper in the typical terms, I'm out enough that I, admittedly, should be better about covering up and wearing sunscreen. I have taken it more seriously recently, but I've definitely had my share of sunburns.  

This past summer whilst on vacation my wife and kids said there was a mole on my back that looked strange. I didn't take it that seriously, and said I'd go in and have it looked at but always had some excuse as to why I hadn't yet called the doctor. I hadn't been to see my primary care physician in a few years as for the most part I'm healthy, active, don't have any major health issues (aside from asthma which is very well controlled). I'm also a fantastic procrastinator and someone who is good at minimizing the severity of things.

Eventually I got around to calling my doctor and scheduling an appointment (last month, November 2015). I figured I'd bundle in a cholesterol and blood pressure check, flu shot, etc. I could also ask him what the current suggestions were for a 42 year old in terms of prostate and colon screening.

I showed the doc the mole and he said "dysplastic nevus", wasn't terribly concerned but absolutely agreed that a trip to the dermo (to which I have never been, incidentally) was totally worth it for peace of mind. He recommended a practice that was a bit more of a drive but that he had good experiences with. I called and made the appointment immediately, assuming that if I didn't do it now while it was on my mind, it might not happen.

I believe they saw me the next week. I showed the doctor the mole, and she looked around a little bit more at my back. "Yeah, we could biopsy that ... but I'm actually more concerned about this one." She pointed to a much smaller mole further up near my shoulder/neck. "Which?" It had never really stood out to me (probably in part because I couldn't really see it). She took a picture and showed me. That one? That's nothing. Nonethless, she did a shave biopsy of the two of them, and I was on my way.

Over the next couple of weeks, I read up briefly on the types of skin cancer, but didn't take it seriously as I figured I had nothing to worry about. Of course interspliced within the waiting period was the Thanksgiving break, which added to the delay of the results. Every couple days it would pop into my head "Huh, I wonder if those lab results have come in ... ", and then about as quickly I'd forget. There was probably nothing to report. Eventually I'd call them and they'd say "oh, yeah, nothing there, carry on!" On the Monday after Thanksgiving, I thought "I'll call them this week." I didn't. They called me on Friday.

It was the doctor. "That mole you came in for is nothing. But the one further up came back positive for melanoma. The initial lab sent it on to another lab for a closer look, and they verified it. You should have it removed completely for a more in depth diagnosis." (OK, thats not an exact quote, but that's what they said). I was in shock, but I didn't panic really. I scheduled the procedure for the following Tuesday, which was yesterday. I should have asked more questions, but I wasn't really prepared.

Between last Friday and yesterday, I read up on as much as I could about melanoma, trying to stay on the clinical/factual side and not too much on the anecdotal/personal story side. It obviously isn't that the latter information isn't important, but I really just wanted to know the facts for now. I had more questions about the labs findings but given the timing, I wasn't able to reach the doctor and figured everything would be available when I got there. The best thing for me at the time was education.

When I got to the doctor's office  yesterday, armed with the knowledge of diagnoses, stages, procedures, etc. I asked for the pathology report. Here are the specs:

Nevoid melanoma, Breslow thickness of 0.75mm (at least), no ulceration detected, mitotic rate of 1/mm2, vascular invasion not detected. The stage is pT1bNxMx ... I'm guessing those x simply mean that they can't determine the spread to lymph nodes/distant sites because the biopsy is only the raised layer from the shave.

The doctor did a wide excision with a 1cm margin, the whole thing is about 2 inches long (and still bandaged). Fortunately, I think it went fine, and now, a day after, I don't have much pain. The doctor said that she didn't think a sentinel node biopsy was required a this time, and to see what the full diagnosis from the sample was before proceeding. She did order an LDH test and a chest x-ray in the meantime. She checked lymph nodes in my neck and groin and said everything felt fine there.

That's where it all stands. From my searching and reading, it sounds entirely likely that, aside from yearly trips to the dermo, I could be done with this. I hope that's the case. I don't think I have any major questions right now, but any insight or things this community thinks are worth looking into further would be greatly appreciated. I think I'm doing ok emotionally, and trying to just hang in there until I know the full extent. It will most likely be a couple weeks until I have the next results. 

Thanks for reading.

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knittingirl's picture
Replies 1
Last reply 1/13/2016 - 4:44pm
Replies by: _Paul_

I followed a ipi/nivo treatment at the end of the year 2015, but after the third infusion I had to stop because of diarrhea and raise of liver enzyms. I have been on prednisone since December 14th at 60 mg /day and the doctor had to increase the dose at 80 mg per day on December 30 th as things got worst. He prescribed me also some budenoside.

Over the last 3 days, my diarrhea has improved and we have started to taper the prednison. I am now at 70 mg/day.

I have few appetite and the poor diet made me loose 8 kg. I am tired but stay positive as my diarrhea gets better and I still don't feel anymore the tumor in my groin. My liver enzyms are normal. I had also some hypothyroidism but it is now under control.

I heard that the tapering of prednisone can be bad. Also, when I will be recovered of this colitis, my goal is to start nivo only but I read that it can trigger also diarrhea.

I am now on medical leave, and I was wondering when I will feel better so I may go back to work . Can you work in a stressful environnment ( I teach in a demanding private school) on low dose of prednisone ?

Is anyone would share his or her experience ?


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raeds's picture
Replies 4
Last reply 1/13/2016 - 1:50pm
Replies by: raeds, Janner

Hi all -

I know I am very fortunate to not have a melanoma diagnosis, but I do have many atypical moles and have had 3 AMH (Atypical Melanocytic Hyperplasia) removed. I have read on line that some docs don't like to call a a melanoma in situ, so they say AMH instead. I DID speak to the pathologist (pretty reknowned - at Scripps in San Diego) and he said I did not have melanoma in-situ. 


Here is my concern: the derm who removed the first 2 AMHs 7 years ago only took 3 mm margins on one, and 4mm margins on the other. I am freaked that the margins weren't large enough. The pathologist had recommended 3-5 mm, and if I had been aware, I would have insisted on 5 mm. Fast forward 7 years, I have a 5 year old and a 21 month old and have just had another possibly atypical mole removed, and I am now obessessing about the old AMHs.


What is the liklihood of recurrence? Does recurrence happen at the site? After 7.5 years, am I in the clear on these? 


Please help. My anxiety is peaking. 


Thank you.


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Anonymous's picture
Replies 6
Last reply 1/13/2016 - 1:21pm
Replies by: Janner, Scottw, Anonymous

Anyone have a good experience with oncologists in Oregon. Looking for suggestions.


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scots's picture
Replies 11
Last reply 1/13/2016 - 11:14am
Replies by: scots, Bubbles, BrianP

I may be starting a clinical trial using glembatumumab - vedotum. I was wondering if anyone had any experience with this drug? Side effects/ opinion.    I'm braf negative. The oncologist is also trying to see if she ca get my insurance to pay for MEK Inhibitor.  Any opinions the MEK inhibitor?




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rick1981's picture
Replies 11
Last reply 1/13/2016 - 2:39am

....panRAF inhibitors.

Stage 1 trials just starting. These pills seems similar to BRAF/MEK in attacking proteins but use multiple paths making them potentially impossible to become resistent too. Promising!

(I can't paste the link unfortunately, anyone else having issues pasting text on MPIP?!)


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Rlukas79's picture
Replies 6
Last reply 1/12/2016 - 2:11pm

I dont have a history of Melanoma but I do have a history of a few moderately atypical moles.  I have had 9 moles removed over teh past 6 years.  Three of them were moderate and required further excision.  The others ended up being either normal or mildly atypical.  I know that atypical nevi may never turn into melanoma and you are more likely to find melanoma in a new lesion rather than an existing one.

I am 36 years old, male somewhat fair skin and blonde hair and blue eyes.  No family history of melanoma but on my fathers side, somewhat "moley".  In total I probably have between 30-50 moles.  Most on my lower half, with a few scattered on my back and a couple on my chest.

I have spot on my stomach that has been there for as long as I can remember,  It was always a light tan/almost yellow pigmented symmetrical spot.  I say spot because I'm not even sure it's a mole.  Anyway, 18 months ago I damaged that spot on accident when I decided it would be to use nair on my chest/stomach.  No problems with the first application but I added a second application.....after I took a shower to rise the first application.....HOLY MOTHER OF GOD, the burning was unreal.....About a few hours later, I noticed that pigmented area was red in color and had developed two ruptures inside the pigment.  A little blood etc.  It passed a skin check in Late July of 2014 but at the time was still healing and I'm not sure how long the doctor really took with it.  It eventually healed with a bit or redness to it, most likely scar tissue.  

A few days before christmas this year, my anxiety was on high alert but was due to other things going on in my life.  Somehow I became fixated on this spot.  My wife said that it looked no different than it did every month before that.  I'm not the one to wait things out and I immediately got in with a Dermotologist the next day.  The PA told me immediately that since I'm fair skinned her policy is to remove anything that looks questionable/irregular.  I told her about the history of the spot and what happened and she told me she was leaning towards it being okay but eyes can only tell you so much, which I agreed with no doubt.  I was told it could take two weeks to hear anything back and will only hear back if something is wrong (atypia, skin cancer).

I knew i was due for a skin check again but I decided to stop using the dermatologist chain of offices I was using and look for someone that is affiliated with centers that deal with skin cancers etc.  I know I dont have the history of skin cancer but I wanted to deal with a dermatologist that knows what to look for. I have somewhat of an increased chance due to the atypical moles I've already had removed.  I found someone who is affiliated with Robert Wood Johnson hospital in NJ.  I went for a skin check a few days ago and to my surprise I didnt have anything to remove.  Everything a had on me was normal except for one slightly mild atypical mole.  They used a new dermoscope that has a big lens in the middle and LED lights around it to better aid the doctor in looking at lesions.  That was a first for me.  

He saw the area that the other office removed the spot from and I told him I actually had pictures of it.  One from when I damaged it with nair and others from the last week.  He looked at the picture and told me wasn't even sure it was a mole and remarked that he didn't think it was melanoma either.  He also said a picture can only do so much as well.  

I guess I'm rambling here but in general do biopsies take that long?  two weeks?  I have to imagine if it were something malignant they would know sooner and let me know sooner.  My anxiety is getting the better of me here.  I've enclosed links with the picture of the spot that shows when I damaged it 18 months ago and what it looks like now under normal lighting and flash lighting from a camera.

If anyone has any advice for me, please let me know.  I know a lot of you are dealing with something way more concerning than what I am dealing with.  Im just a 36 year old guy with an amazing 3 1/2 year old daughter who wants to stay around for as long as God lets me.

From July 2014 - Damaged spot [URL=

December 2015 [URL=



The size is just about 6mm






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Maereard's picture
Replies 3
Last reply 1/11/2016 - 9:06pm
Replies by: Maereard, stars

Okay I need some advice from people who have experienced this and understand my fear. I had melanoma removed from my right shoulder blade about 3.5 years ago. This morning when I took a shower it hurt to touch. I checked it when I got out and there is a little red spot right in the middle of my scar. My dermatologist could not get me in today so I went to my oncologist. He touched it and said it's just a stitch. Nothing to worry about. Has anyone else had a stitch bother them so long after surgery? Should I schedule a dermatology appointment and ask for a biopsy or am I just being silly?

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Tessie64's picture
Replies 1
Last reply 1/11/2016 - 7:09pm
Replies by: Janner

I had a small mole (6 mm) removed from a toe by punch biopsy three weeks ago. Pathology came back as lentiginous junctional melanocytic proliferation with mild to moderate atypia. I was told that I need to have a complete excision done; appointment is in a month from now.

The area is still very sore. When I look closely, there seems to be mole left around the punch incision. Could this be new growth already, or do they only take a small  specimen of mole for testing? If it is regrowth, should I call doctor for sooner appointment? I wanted to say above that this a fairly new mole (started as tiny dot about 4 years ago) that has been growing.

Waiting is hard. Should I be concerned that after the excision, the pathology could come back as melanoma, or would they have told me that the first time?


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LisaName's picture
Replies 5
Last reply 1/11/2016 - 5:24pm
Replies by: LisaName, Janner

Okay, so to beging with I would like to say that 6 months ago I got a mole cut out because it was raised, big and peeling off. Result came as dysplastic nevi with proliferation(borderline thing, not enough to be called melanoma in situ, but not just atypical mole). I got re-exision, margins clear and having my check ups.
I am fair-skinned, but I don`t have that many moles. I have only one mole left up to 1 cm and the other one got removed.

So i have that 1 mole left on my tummy that is being watched by 2 docs: private dermatologist(who worked in big dermatoonkology hospital before) and dermato-oncologyst.  I have had it all my life, both doctors describe it as typical atypical nevus: up to 1 cm, brown colour, darker brown raised central papule. They have checked it 6 months ago 2 times(as i was very panicked) and month ago private derm said it is completely calm and no changes, dermato-oncologyst didn`t even pay much attention to it, only when student that was with us pointed out at this mole he said "No worries this is regular atypical nevus, lets just keep watching it".

But 2 weeks ago I became stuck on that mole, I was checking it everyday, rubbing it, stretching and touching papule all the time. Once I even rubbed it with napkin and here we go some mini dots appered on the top that were just dry. After that I started using moisturiser all the time and in few days those dry dot flaked off with shower. Now after 2 weeks it is almost back go normal and the papule is only getting more dry if in cold place. But you don`t feel it while touching, it is very soft. You can see it only in specific light that there is one tiny flake left that is smaller than 1 mm. It didn`t change size, colour, surface(anymore after that) and I am going tomorrow to doc to have it removed as i almost didn`t sleep and eat those days.

Janner, tell me please is it now this way that any changing mole after bad experience will now mean that it is turning? Is there at least one chance that it is just coinsidence that second mole got irritated? I am very scared for everything right now and wanted to know if all changing moles are dangerous and if this can be considered as one of the changes that you always mention to watch for?
And also docs checked me just 1 month ago and one of them sees melanoma patients everyday and he didn`t even get worried about the mole, is it normal?

thank you 

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