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
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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ecc26's picture
Replies 16
Last reply 1/31/2016 - 9:42pm

I know I've been absent from this board for a long time, but I find myself apparently failing the Merk PD-1 I started a year and a half or so ago. I won't go into a lot of details about my past as you can find my other posts on here by doing a search

I had 2 masses in my chest that I underwent radiation for in the fall and those look great at this point, but I also had 5 new brain mets (that turned into 14 by the time I got up to the center for gamma knife). I've got an enlarged lymph node in my neck and after yesterday's scan results apparently a new tumor in my spleen and one near the cranial pole of one of my adrenal glands. Since they treated 14 with gamma knife instead of 5, my medical oncologist is reserving judgement on that until the scans get up to that doctor, but there were still a whole bunch on the MRI. Hopefullly I'll have an answer about which were treated and (hopefully) responding. 

I've been fighting off my oncologist's suggestion that I switch to the PD-1/Ipi combo because I remember well how I felt on Ipi and I've had no side effects on on the PD-1 over the last year and a half. I should also note that if not for the scans, the only tumor I'd have known about is the lymph node in my neck- for which I was hoping to possibly use the recently approved Herpes vectored vaccine (since it needs to be injected directly into the tumor). But I think I've run out of time to stave off changing therapies, especially if the MRI shows no improvement or worsening. I've been spending time today looking for trials and other possibilities. 

The other possibility my oncologist mentioned was a vaccine trial happening in Buffalo, NY, but he didn't seem to be that excited about it- probably because the melanoma specialist I used to see up there has moved out of the area and is no longer there, but also because vaccines in the past have not really panned out very well. I'm not sure he has as much faith in the the department that's there now, and he did call my former specialist to get his opinion- who suggested the combo therapy. He has also contacted Dana Farber (Boston, MA) and they have not implemented that for their patients, despite having run trials for it at their hospital. 

Does anyone on here have any other suggestions? I'm on a bit of a time crunch to get it figured out as he'll be looking for an answer likely tomorrow evening after I see the radiation oncologist. I'm not critical (yet) but know myself well enough to know not to hold off too long. I don't want to give up the no side-effects if I don't have to, but I don't want to waste time on a vaccine trial either. I know there's no way to tell if it will work or not, but I have no idea (I'll be reading about it this afternoon) what is involved with the trial or if I'd even qualify for it. Any help/suggestions would be greatly appreciated


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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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jbronicki's picture
Replies 6
Last reply 1/14/2016 - 2:21pm

Hi all,

Just passing along some positive news.  We got my husband's scan results at MD Anderson yesterday and still No Evidence of Disease.  We have done the wait and watch since his surgery 2 years ago.  He was initially thought to be Stage 4 nodular metastatic melanoma (scary words to hear) since his Breslow depth was 19 mm (I'm not missing a decimal point :) ) and there was no overlying epidermal component.  He does have the NRAS mutation.  I still remember getting his initial pathology back and seeing that everything he had (breslow depth, Clark level, mitotic rate, etc) was at the highest end of the spectrum and I would research and he had every indicator of immediate negative outcomes.  Our doctor here knows us as the couple who argues (we argue all the time at the doctors since I'm a researcher and my husband sees no point in researching, he is a "it is what it is" kind of guy).   It's hard to believe we are two years out.  As I was waiting on the 9th floor where the Melanoma wing is located, I always look around and think that maybe one of the MPIP bulletin board members is waiting too.  It's sobering to see all the people in the waiting room and hoping they are responding to treatment.  And of course, my thoughts drifted to Artie sitting in the same spot just several months before and it hurts the heart.   I just wish good stuff for everyone.  I'm going to lay off the research for a little bit, since our doctor told us that any adjuvant treatment and vaccine trials are not an option (too far out from original surgery and they would not risk the side effects at this point with NED) so we are in wait and watch path for the foreseable future.  We have a 7 yr old and now we have been approved for adoption so hopefully more good stuff to follow.  



Jackie <3

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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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scots's picture
Replies 3
Last reply 1/15/2016 - 7:54am
Replies by: scots, kylez

I'm looking for anyone with a MEk mutation. What treatments/drugs are you taking. Any experience with this mutation.


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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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