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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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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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.

scot

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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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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.  

Cheers,

Jackie

Jackie <3

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Anonymous's picture
Anonymous
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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Anonymous's picture
Anonymous
Replies 2
Last reply 1/14/2016 - 10:30am
Replies by: Anonymous, AllysonRuth
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
Anonymous
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.
[b]THIS CASE WAS REVIEWED AT THE DAILY INTRADEPARTMENTAL CONFERENCE.....[/b]
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

non-ulcerated

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 ?

Thanks

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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.

Rae

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Anonymous's picture
Anonymous
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.

Rebekah

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