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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Hi all-

In an effort to remain hopeful i know many of  rely on this site for good news and long term survivor stories....

I was readiing about LibbyinVa, who appeared to be one of these, with 7 years NED at Stage IIIB....I sent her a message and have not received any repsonse....and the last post from her was in Sept. 2014.

I am hoping she is out living her life, but wondered if anyone had heard from her.....

LIBBYINVA, if you are out there, let us know you are OK.  Would love to communicate with you.


Thanks and best,


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Anonymous's picture
Replies 6
Last reply 11/17/2015 - 2:29am

Hi all, I have posted under different subject lines up to now but I do need to know if anybody can specifically comment on stomach mets. My Oncologist says this is the first case in her 30 years that she has come accross stomach mets. The tumor is quite large at +- 6 cm x 2 cm in the upper region of the stomach.

I have yet to see her to discuss treatment going forward. In the meantime I am having continious black stools and a fair amount of discomforting pain in the stomach region.

There is talk of total resection and reconstruction surgery - has anybody had this and is it effective?

What other treatment is available?

Any advice / input will really be appreciated.


Wally from South Africa


One day at a time.

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Debbieamccoy's picture
Replies 1
Last reply 11/16/2015 - 7:10pm
Replies by: DZnDef

Spent three days in hospital for edema fluid retention and constipation . IV gained 40 lbs in water . Severely constipation and have +4 edema .on a bm regime new diuretic . My doc said this is normal with liver involvement  I'm so discouraged 

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Anonymous's picture
Replies 6
Last reply 11/16/2015 - 7:01pm
Replies by: geriakt, DZnDef, Anonymous, AnitaLoree

My husband is using it.  I dont know much about it and wonder if anyone has any experiences with it. 


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Ninniditti's picture
Replies 5
Last reply 11/16/2015 - 6:15pm

Hi, I have been having increasing pain in my  maxillary sinus, my upper plate, my scullbase, side of my eye and the ear, in fact where my tumors are. I have my seventh dose of Keytruda next week. Can T-cells invading the tumor have anything to do with the pain? Pain would be much more bearable if it was. I am taking LYRICA, but it does not help.



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RobGoldsmith's picture
Replies 6
Last reply 11/16/2015 - 1:10pm
Replies by: Janner, swissie

I have a mole which has regressed.. well this is what my GPs think.

I went to see a GP who has a specialist field in Dermotology, he used a dermoscope on all of my moles (I have a lot). He then found this mole which is half pink, probably almost 3/4ths pink. 

The GP thinks it is a benign atypical mole which has regressed. He is having me sent to a derm on Monday to have it cut out however. I have looked online fort days and I can hardly find any cases of a benign mole regressing on someone in their early 30s. 


Literally everything I read says melanoma. Why are there no reports of images of an atypical mole regressing right back? It must have been doing it for 6 months plus. 



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scottr's picture
Replies 8
Last reply 11/16/2015 - 3:34am

Hi All,


I posted back a month ago regarding a new diagnosis of Stage 1 tumour. It was .32 breslow, non brisk TIL, and said the lesion had regression present - over 75% of lesion involved. The tumour was on my mid-back.

About 20 years ago I had a similiar looking mole to the melanoma. It was there for quite a while. Rather dramatically it split in two and then disappeared completely. I took note but did not seek medical attention.

That was kind of stupid because my grandfather died of this illness 10 years earlier. I did not htink mine was melanoma especially after it disappeared..

Anyway yesterday I met with surgical oncologist for what I thought was a consultation. (according to my doctor who said she would be performing WLE and SLNB.) Apperently she decided to do the WLE on this meeting instead. SHe also informed me that she did not think that the SLNB was neccesary.

During our conversation I asked about the extensive regression and she said that this was a good thing. That is the first time I have heard this as every article I have read suggests that over 75% regression was not a good thing.

I have a small lump in my neck, she felt it and said that it does not concern her.

I told her about the mole that disappeared 20 years ago and now there is a smaller but similiar mole in the same place. She biposied this with the WLE.

I can not shake the feeling that somehow stuff is getting missed. I am trying to be ok with everthing but was surprised she was not going to perform a SLNB, particularly with the small lump that was dismissed.

She is the expert but I am left wondering if this disease is being left to potentially progress. I hope not.


By the way... Lots of love to all of you.

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Millykamp's picture
Replies 8
Last reply 11/14/2015 - 5:16pm

Hello everyone Since FDA approve Yervoy for stage 3, I was wondering if anyone had started on it? For the ones that has been on it what is the pro and con of it?? I am stage 3 and about to meet with the melanoma specialist next week to see about treatment plans a since this is all new to me. I have one positive lymph node out of 17. Any kinds of helpful question I should ask would be great.. Thanks


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gregor913's picture
Replies 10
Last reply 11/14/2015 - 2:58am


I just got back my results from the SLNB. My surgeon told me the node came back positive for traces of microscopic cancer cells. He does not know if I should have anymore nodes removed because the disease is only microscopic but did state that I would need further treatment. They only found one sentinol node and he ended up removing another 2 nodes because they were really close to each other. Im only 34 years old and I dont think Im comfortable with that approach and I really would like the rest of the lymph nodes taken from that region under my armpit just in case any other cells are in other lymph nodes. Since my tumor was ulcerated im a stage 3b right now.

Any thoughts would be appreciated since I feel like a boulder was dropped on me.

Thanks Greg

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JoshF's picture
Replies 19
Last reply 11/13/2015 - 7:29pm

Looks like after surgery we'll be moving forward with Opidivo. After speaking with my onc about different options; based on data, side effects etc... this seems to be best option. My concerns were that if this isn't the "magic bullet" for me, I don't want to paint myself in corner from doing any other treatments, specifically the combo therapies out there. I asked why not IPI-Opidivo now and answer was measurable disease and side effects. So questions from current people on this?

Side Effect profile? I was told usually minimal in most cases....

What is plan in terms of duration for treatment schedule? My onc said there is limited data on how long protocol should be administered.

Anyone change their diet? My sister is trying to push me to ketogenic diet? Not familiar with that. I need to eat better in general but diet isn't horrible.

Drug administered every 2 weeks....infusion or port? I saw a post on that so I'll go into that to see what everyone is saying.

Any other advice....suggestions? Changes to normal life other than going to get an infusion every 2 weeks?  I'm not ashamed to say I'm afraid...maybe I shouldn't have thought I was over the hump.... this is some life we all live but it beats alternative at this point!

All the best!!!


Let's work for better treatments....for a cure!!!!

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chrisholder's picture
Replies 8
Last reply 11/13/2015 - 4:02pm

Hi, all,

I posted about a week ago for the first time, wondering if there were people reading who have mucosal melanoma.  Mine is in the maxillary sinus & was diagnosed in May of this year; started Ipi/Nivo soon after but had to stop after only two infusions due to severe side effects and hospitalization.   Am now on Pembrolizumab (Keytruda) & so far tolerating it.  Would be very eager to hear of others who have MM, what your treatment is, how it's going, how you are managing the side effects, etc.  Unfortunately it's only 1% of all melanomas and so there's far less statistical history and information tha for the other 99%!

I read this and several other patient-based cancer sites/blogs regularly and am contnually moved and uplifted by so many patients' courage, determination and - in the face of this awful disease - humor.  I pray for everyone's peace, comfort and improvement.     Chris

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brownidgirl1's picture
Replies 5
Last reply 11/12/2015 - 3:09pm

Hello, I just signed up on this site today because I am having a slight complication from surgery to remove 2 lymph nodes from my left groin. I have read the stories shared on this site and my prayers go out to each and every one of you!! I have questions but am having difficulty getting answers or results from my doctor and wanted to see if anyone here had any simiar experiences or advice.

After the removal of the lymph nodes I did not have any drains put in. I have had to go to the surgeon twice now to have him drain the site with a syringe. The site keeps swelling and filling with fluid and there is nowhere for the fluid to go. On my last visit I believe he used a lightly larger needle to drain the fluid so it is draining itself a little at a time but it is still swollen. My fear is that I will end up with an infection or that I will end up in the doctor's office every few days to continue to have this drained.

Does anyone have any advice or suggestions? I would appreciate it greatly!! Again, my prayers go out to everyone who is facing this battle!

Thank you,


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jenny22's picture
Replies 14
Last reply 11/12/2015 - 9:21am

Hi All- After recent 2nd recurrence (last week), just had surgery today at MSK....very early today....home now.

Since this is 2nd recurrence docs (both surgeon, COIT at MSK and ONC Pavlick at NYU) are recommending a course of radiation in the hopes of preventing more local recurrences....

After surgery today, Dr. Coit told my husband it is as much an art as a science to get it right.....size of radiation field among other things.  In my case its more tricky since its on the NECK.

So my question is, wonder if i need RAD ONC whose specialty is Melanoma or Head/Neck....I know my docs will weigh in, but wondered if anyone here had any thoughts on this subect.

After Radiation of course trying to find/decide on adjuvant systemic treatment......

Must say, this is a little scary these days....

Any thoughts appreciated.


Best to all,



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davekarrie's picture
Replies 4
Last reply 11/12/2015 - 7:34am
Replies by: davekarrie, paul, Bubbles

Hello all,

I was on a clinical trial with Keytruda and IDO inhibitor, but my lung mets are growing close to my heart and other lymph node masses bigger in chest, in addition to one on left adrenal gland and kidney giving me pain at times. Was rushed to ER on Sunday with so much pain. Anyway, I know the Taf/Mek combo usually works for BRAF but is limited to around 9 months or so. I am wondering for those that have done Taf/Mek how you are doing, are you NED, course of treatment etc.?  I just want to get ducks in a row if this fails and we have to shift gears again.  My oncologist said once tumors shrink with combo we weill come back in with another PD1 before the combo stops working.  Much love to you all and thanks for any help! Dave

Live life to the fullest and enjoy each day! #noonefightsalone

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Bobman's picture
Replies 3
Last reply 11/11/2015 - 4:03pm
Replies by: stars, Bobman, Janner

I am  now up to 6 primaries. Besides  that, I am producing  more lesions  at an incredible  rate lately . Depending  who I  see,the opinion  varies  on  what is the best biopsy  method . My surgeon  prefers punch,while most of the dermatologists have performed  shave. I know most of what I've  read here suggest  punch. One thing I don't  fully understand , is if on a large lesion  I get the punch,could the area punched be ok,while the other part of it be malignant ? 

Thanks  in advance  for any help,

Aloha , Bob

We are one.

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