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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stevecathy's picture
Replies 4
Last reply 1/16/2016 - 12:47pm

My husband had reaccurence Mets in transit found at 3 month dermatologist check. He had just finished 4 infusion of yervoy. Went back to ctca in Chicago Wednesday this week , oncologist did ct scan now has small nodule in right lung too small to biopsy. Now he is to start mekinist and tafinlar hopefully next week. Wanting to know thoughts and anyone experience with this combo treatment. Thank you and blessings

Cathy Jewell

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Anonymous's picture
Replies 2
Last reply 1/17/2016 - 10:16pm
Replies by: Anonymous, jamieth29

I have a recurrence in my groin area which they wont operate on as I am on keytruda with mets in a few different places in the body. I dont really want to do radiation but I dont think there are any other options.

Does anyone have experience with radiation to the groin ie number of treatments, side effects, strategies to help with coping.

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Anonymous's picture
Replies 5
Last reply 1/15/2016 - 10:46pm
Replies by: KMick, Azcaddyman, Anonymous, Empire

I was just diagnosed.  Dermatologist excised.  It was 4mm, which I understand is relatively large.  Have been referred to a Surgical Oncologist.  I expect discussion/suggestion of SLNB.  How soon should this be done?  What is the typical wait for such a test?

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Anonymous's picture
Replies 6
Last reply 1/26/2016 - 12:35pm
Replies by: _Paul_, Nanners10, Anonymous, jennunicorn


I was on this board almost two years ago and it was very helpful. Thank you so much for that!! Was looking for Melaoma Specialist in SF Bay Area for my mom.


Mom went to Stanford and had a WLE on her right leg almost two years ago (where melanoma mole was) and SNB. The SNB came up negative. The past month she has had swelling in right leg (swelling has since gone down with more exercise and water). HAs had slight swelling ever since SNB so was not to concerned but it did get quite bad and her primary care DR sent her in for sonogram to rule out DVT and do a more focued one on lymph. What has come back is that one inguinal lymph glad is enlarged with blood supply and highly suspicious for mailiganancy.  The Melaoma Dr was suprised and said it would be very rare based on her original melanoma.  From what I have read on the board and overall it can happen. My mom is upset and concerned about her care at Stanford.. who she should be talking to and what next process is.. As of this point trying to get ultrasound guided biopsy, but also considering second opinion with UCSF. Though not sure would see her till recuurecence confirmed? My other Question include  -At this point should primary dr be guiding care.. she has talked with Melanoma Dr? -Is single Biopsy the way to go or should a PET scan be done first? 


Any input appreciated!!!!!



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Anonymous's picture
Replies 4
Last reply 1/17/2016 - 2:57pm
Replies by: Anonymous, Ed Williams, geriakt, Scooby123

Ive been sick since dec 31st with a really bad cold that I caught from my daughter.  I actually tested positive for the adeno virus. Had a fever for  8 days straight and was in the hospital for 4 days. Last friday was my last fever until last night. Started feeling week and took my temperature and it was 103. I took a fast tylenol and within a hour was back down to 98. My question is on each side of my neck I have a swollen lymph node maybe the size of a marble that are a little tender. I had a ct scan of my neck in hospital and all they seen was inflammation and congestion. Is this anything to worry about or is this just from my body fighting off infection. I have Yervoy scheduled for monday. Will I be allowed to do Yervoy or will the yervoy push me over the edge and make me super sick. Can somebody do yervoy with a cold? Thanks

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Scared99's picture
Replies 3
Last reply 1/15/2016 - 7:52pm
Replies by: Anonymous, Scared99, Janner

Hey guys and girls,  I am new to the forum and apologize but I did not know where to turn.   Let me start by saying I have not been diagnosed with Melanoma.   I am 35 years old in good health.  

My concern is in July of last year I had my first full body scan since 2005 with a new Dermatologist.   I have always had alot of moles.   On my torso I have 7 that are around 4mm  and about 60-100 tiny pin point sized moles.  I was an idiot in my 20's...  I used tanning beds during my 4 years of college and 2 years after.   I sun bathed and rarely used sunscreen when outside.  I would only burn the first sun after the winter so I was ignorant and did not think I needed sunscreen because I would get very dark.  I regret all this now and it makes me sick.   My dermatologist in July commented on my moles and said that I had several funky looking ones and I need to consider having them removed at some point.    She biopsied one on my back that I never noticed and it came back very mild atypia.   She called me in and explained that I have a very high risk for Melanoma because of this atypical mole  and would need checkups every 6 months.    I had several noticable moles on my torso and she did not comment on them at all. 

Fast forward to this Dec.... I made an appointment with a new dermatologist closer to my home.   I had another scan with him.   He photographed a mole on my leg and said it was an inflamed nevis but wanted to watch it.   He scanned all my moles and said everything looked good.    He wanted to see me in 3 years,,, unless I noticed a change in the mole on my leg.   I was somewhat in shock after my visit in July and asked him if I had any atypical moles.   He said the only one that I noticed is the one on you stomach it looks somewhat atypical.   He asked me when I noticed it and I said I remember freaking out about it in 2003.    I went to a derm back then and they did nothing.   He said since it has not changed since then keep an eye on it and if you notice anything please come back in.    So the two differing attitudes of my dermatologist's confused me.    I made a 3rd appointment which I had Yesterday.

The third derm did a body scan on me.  He commented on my moles and said you know you have a good deal of moles.  Keep an eye on them.    He went right to the mole on my stomach and told his nurse we will get this one off.     He did not ask me about the history of the mole or anything.     This alarmed me and I asked him does this look like melanoma ?   He reponded it does not scream melanoma but it looks different from your other moles so I want to investigate it..  So he measured it and shaved it off.    It was 4mm directly above my belly button.    Right now I am confused and scared about the whole situation.   I did not notice ANY change in that mole since I first noticed in in 2003.    I am playing the what if game at the moment and making myself sick.    THe derm in July did not even pay it any attention,  the second derm in Dec made a fleeting coment on it and this derm wants it off.     Should I be alarmed about this ?  I am worried that this has been a melanoma for along time and no one did anything .

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Anonymous's picture
Replies 11
Last reply 1/17/2016 - 6:06pm
Replies by: scots, AshleyS, kylez, G-Samsa, Anonymous

Has anyone recently been through this treatment? I have read several articles/stories about this treatment but they all seem to be 3 to 4 years old so I do not know where they are now. I'm looking at the trial at NIH. I'm looking for some other treatments because ippi/ nivo did not work for me and I'm braf negative. I'm also looking at another trial at Duke and I'm working on a consult at MSKCC for a different opinion. I'm leaning towards the trail and if that treatment dose not work then I will try the the TIL treatment.



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Azcaddyman's picture
Replies 6
Last reply 1/15/2016 - 11:54am

I had a large melanoma lesion on the back of my neck (it's the first picture in the melanoma picture gallery). I was diagnosed through a small shave biopsy (maybe 20% of the surface. Barely a scratch). The pathology report showed no clear margins. Depth of biopsy was only .66mm deep. So my tumor was at least that deep. No mitosis, nothing remarkable on the biopsy other than ssm at least .66mm with signs of regression present at base. Again this was only a small spot sampled on a large (3" x 1.5") lesion. However all the data my pathologist has go go on put me at pt1a. I was referred to a head and neck surgical oncologist. She scheduled my wle and decided we would go ahead with a slnb due to the incomplete staging from partial biopsy. 


I had my surgery yesterday. I look like I was attacked by a shark. Again this was a large lesion. The surgeon  cut the back of my neck ear to ear and used a flap to close the wound so I have this nasty "U" shaped scar under the line from ear to ear.. But that's another story.


Here's my issue/question. After they injected the radioactive tracer I was told to move around/exercise for 30 min followed by 30 min laying in that nuecular imaging machine (don't know what it's called). I was told the dye wasn't draining from the injection site. I was given another shot and made to rub the area for 30 min. Back into the machine. Still not draining (nurses were accusing me of not exercising or rubbing correctly). Now I was made to walk the hall of the hospital with squishy balls in my hands and asked to exercise my arms and hands while I walked back and forth. I was getting quite the amused audience. So yeah I felt like a fool. Now back in the nuecular lab I was told the Dr wasn't allowing me to leave there until they found the right nodes. Back into the machine. Still not draining from injection site. Now they change their mind and tell me the Dr will just use a handheld scanner in the or to find the node. After surgery my Dr said she couldn't positively id any sentinel nodes. She did mention that there was some tissue showing increased radiation (which she did cut out ) however she wasn't even sure it was a lymph node let alone the sentinel node. 


I asked if that would impact her ability to correctly stage me. Remember the inadequate initial biopsy already made that a challenge. I was told she could clinically stage me even without the sentinel lymph node results. 

How? Isn't the definition of stage III lymph node involvement? I asked if they're would be any follow up imaging (pet-mri-ct) performed. My Dr said they don't do that. If she was suspicious enough she would use a sonogram to look for enlarged lymph nodes. 

Important information: I'm also a c.o.p.d patient and on a high daily long term dose of prednisone. This is the same drug used to treat lymphoma because it reduces swelling in the nodes. Knowing this how effective could a sonogram even be?

Is this a problem or am I worried for nothing? Anyone else experience a failed slnb and if so how did your Dr's handle it. Should I run like mad to another Dr? I'm limited on what my insurance will cover and I already chose what should have been the absolute best option available to me. I'm being treated at fox chase cancer center in Philadelphia PA. 


Oh p.s. 

Immediately adjacent to the scar is a spot (lump, bump) that has been rapidly growing and evolving that I already suspect could be modular melanoma. Of course this was completely ignored and now would be a nightmare to treat given its now moved location adjacent to a scar line. Although I admit this could be simply my own paranoia. Although the evolution is apparent thanks to the many pictures I was taking to chronical my melanoma. 

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katieherwig's picture
Replies 1
Last reply 1/15/2016 - 11:43am
Replies by: marissav

I'm doing some research on taking Plexus and would appreciate anyone's feedback. I'm currently on Keytruda and Tafinlar capsules. I'm considering multi vitamin, cleanse, probiotic, and the slim drink. 

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Rlukas79's picture
Replies 3
Last reply 1/14/2016 - 10:49pm
Replies by: Rlukas79, Janner

There is so much conflicting information about severe atypical Moles vs melanoma in situ. 

my pathology report says Severe Atypia and was confirmed by other dermopathologists at the lab. The original derm I used says to me not cancer but severe and just get it excised in about a month or two. 

i had already planned switching to another derm that just has a much better foundation for their practice. I brought the pathology report to him and he broke it down for me on the malignancy and benign spectrum. Instructed me that of course severe moles have to be excised like melanoma, 5mm margins. Still insisted that I have no other concerns as he did a skin check two weeks ago and that a yearly visit is all that I need. My history with moles is mixed

1 severe atypia December 2015

2 moderate atypia, 2014 and 2009

1 moderate to severe Atypia 2010

and 5 mild Atypia 2009 and 2014

with this history should I be doing bi yearly visits?

i have no more atypical moles just normal moles scattered from my back (5 or so)

and about 25 on my legs. These are all normal. 

My derm says that while I may think that's a lot of moles and taking into consideration the ones that were removed and properly excised, he doesn't deem me as even a moderate risk. I'm fair skinned. 


My family doctor says Severe might as well be melanoma in situ because labs will under diagnose sometimes.  I thought it was the exact opposite. Over diagnose MIS rather than severe Atypia when it's just to hard to tell. Or refer to it as severe Atypia starting to evolve into MIS. 


So my questions refer to am I high risk and do bi yearly screenings?  And Is severe Atypia really just MIS?  If the normal risk of melanoma is 2% for an average Caucasian, anyone have an idea what it is for people that have varying degrees of Atypia?  

Thanks i was just bringing the anxiety down and my Family doctor of all people raised it back up. At least she gave me Xanax. 

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Anonymous's picture
Replies 2
Last reply 1/14/2016 - 10:30am
Replies by: Anonymous, AllysonRuth
gcooperbl's picture
Replies 6
Last reply 1/30/2016 - 5:56pm

my dad has stage 4 melanoma in brain lungs and liver......he has been offered pembro but only one dose? we cant understand why as it is supposed to take 3-4 doses min? 

he is braf negative 

his cancer in liver is getting worse and needs treated asap, he is due to start pembro next week, and he is on steroids though coming off them.

any advice? he needs the best treatment? any other drugs out there that could help? or any more tests we could do?


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Anonymous's picture
Replies 6
Last reply 1/19/2016 - 4:34pm
Replies by: Maereard, Rlukas79, Anonymous, Janner

I went for my regular skin check last week and while I was there I asked the doctor to check a spot on the back of head that was itching like crazy. I expected him to send me home with medicated shampoo. What I got was a small chunk taken out of my head with the smell of burning flesh to stop the bleeding and a terrible anxiety ridden wait on a pathology report that still is not back. I have been NED for 3 years. I was stage 1 at diagnosis (it was on my shouldler blade/ back)and have only been hit with basil cell about 5 times. Anyhow I did not prepare my mind for anything on my head!!!! Now I'm panicking and loosing sleep. My head keeps itching but the dr. refuses to prescribe anything until he sees the report. He usually reads them himself but this time they sent it out to MAPS "to be sure." Sure of negative or positive they won't tell me. I'm so scared. If it comes back on my head I'm terrified and the Internet odds are NOT helping my paranoia:(

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Anonymous's picture
Replies 8
Last reply 1/14/2016 - 10:33am

Had my appointment with my doctor yesterday about what to do next after this last huge surgery. The options that were given to me are consistent with what most others here with stage 3 are getting. Dr Luke's opinion was watch and wait, ipi 10mg or trial, his personal opinion was watch and wait. He again stated the reason as ipi has shown about the same statistical numbers if you do it now or later. He did say some docs may get pd-1 off label but he doesn't agree with doing it now. The reason is that no trial data is in for adjuvant setting. He stated that if we give you pembro and the cancer comes back is it because it didn't work or because we used it the wrong way? There may not be enough cancer present for the drug to do it's job and then docs and insurance may be hesitant to give it to me again. I would also lose clinical trial options because of prior treatment. I am very high risk probably about 80% of relapse. The braf drugs cleared almost all cancer from the 1 positive node but did show microscopic cells still. He said that is the paradox with those drugs they work like magic but almost 100% of the time don't kill all the cancer. I have had a bunch of other nodes that were positive when i had my original superficial groin dissection that have all been removed by surgery. The other 6 on this surgery were clear. The one node was full of macrophages that had replaced the cancer. They dont know why but it is something to do with regression they think. So the hope is that was All of it and it has been cut out. They are going to try and laser dissect the cells that were still viable and see if they can learn anything about why those cells showed resistance. I did ask about staying on braf drugs and he didn't think it was a good idea. I didn't show resistance and we might need them later so he doesn't think we should burn them. Median time to full response is about 2 months and I was on them for 4. I am going to see if my local doctor will check into pembro and see if insurance will give me that option. I also asked about ipi with leukine as there was a trial that showed that combo to be a little better response rate wise and less side effects. He agreed it would lessen side effects but most people think leukine may actually suppress your immune system and it was to small of a trial to be relevant. Last thing will touch on is he said they are writing a paper on the bacteria in your gut. He said they have evidence that people on the east coast have a higher rate of colitis than people in the midwest because of the bacteria created in different environments now if that's not crazy! I need a scan soon since its been 3.5 months but I'm going to take a week or 2 and think about things before i make a decision if a could find a trial i think I'd look hard at that option but almost all are placebo or interferon. I have now had braf drugs so that will make a adjuvant trial that much harder to find. Long post sorry. Like always ask me questions i like feedback.

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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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