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 2
Last reply 11/19/2015 - 1:07pm
Replies by: Lil0909, Janner

My doctor told me my sentinol node biopsy was positive with melanoma. He said I had microscopic melanoma because they could not see or feel it but only see it with immunochemistry and microscope. I asked how much because I've seen people say they found 20 cells. He kind of chuckled and said pathology doesn't count each cell. I saw the path report it just says positive for melanoma with immunochemistry stains s100 melana mart1. Is this micromets?

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kpcollins31's picture
Replies 7
Last reply 11/19/2015 - 7:33pm

Has anyone heard from BrianP? He and I missed each other by a few hours at Duke last Monday (11/9). I know he was dealing with some liver mets and was considering surgery. Let me know if anyone has heard anything.



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Anonymous's picture
Replies 5
Last reply 11/19/2015 - 9:34pm
Replies by: _Paul_, Anonymous, momof4boys, Kim K, gregor913

Hi. I have a upcoming pet test scheduled. I was told that I had micromets in 1 sentinol lymph node. What are the chances that these micromets spread to my organs? And chances the pet will be positive. Sorry I'm just really scared.

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Debbieamccoy's picture
Replies 6
Last reply 11/20/2015 - 4:35pm

Talked to my  onc to day if my liver numbers don't get better and my liver doesn't decrease in size there's not much hope. I've only had 2 doses of the combo. My belly is still swollen. Buy no ascites . I'm exhausted from nine days in the hospital and exhausted and duds disappointed 

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mkirkland's picture
Replies 15
Last reply 11/21/2015 - 12:56am

I would love to hear everyone's experience with Yervoy 3mg. I am a stage IIIA and I'm just debating all of the options. The possible side effects are pretty scary! 

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takkat's picture
Replies 13
Last reply 11/19/2015 - 11:20pm


  I am concerned with starting ipi because of the side effects.

I am 51yrs old and in good overall health.

In 2011 i found a melanoma on my right foot. The skin was removed and the margins were clear.

At that time I had a chest and brain scan that came back clean. I also had sentinel node taken and clean as well.

This January I had a ct scan, unrelated. It showed a spot. After six months I had a pet/ct and biopsy that confimed meanoma.

The melonoma was removed with surgery Oct 1st, and the recent pet/ct scan is clean.

The oncologist is recommending ipi even though I have  no signs of the disease.

I realize the the melonoma will most likely be back, but the side effects seem high to me.

I am thankfull for the treatment but I think it would be better to do the treatment with an actual tumor to treat. Am I wrong in thinking this way?

 Also the oncologist discussed some other drugs that had less side effects when taken in combination but did not want to use them because I did not have any tumors, and he would not know how long to treat.

I am braf positive, if I said that correctly.

I know that this treatment, for people in my shoes, is newly approved, so I would imagain that there is not alot of expeience with this. 

Any help or advice is appreciated.

    Thank You

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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 7
Last reply 11/21/2015 - 8:38pm
Replies by: Anonymous, Beehappy, MattF, arthurjedi007, Julie in SoCal

I have had four infusions of keytruda without really any side effects.

However in the last couple of days i have been having the urge to go to the toilet badly and only a bit comes out and my bottom or sphincer is really sore. I mean it is really sore after defecating.

In fact it is dangerous for me to pass wind as i might soil myself a bit..

I know i could use immodium but the thting is I am not really constipated in fact it seems i only get a bit out but i still have the urge to go to the toilet. I dont see my doctor for another week.

Has anyone else had similar symptoms and what have you done? 


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Toby0987's picture
Replies 7
Last reply 11/25/2015 - 7:22pm

Hi-I was diagnosed feb of 2013 with stage 3b melanoma at mayo-primary site was under side of right arm that spread into my right axilla-1 node macro. I turned down interferon and radiation. They did a wide excision and also took out 48 armpit lymph nodes/just one fat one was positive. Well since then I've had unrelated pap thyroid cancer (ablated and dead) and now I have a pea sized hard lump a couple of inches from my forearm site. It has been there for a month and doesn't seem to change. Forgot my mitotic rate was 4 from melanoma. So should I get the hard pea cut out just under my skin (no color and it formed under the skin) or should I leave it for my pet scan/ultrasound in March? What do you think?

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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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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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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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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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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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AshleyS's picture
Replies 27
Last reply 11/17/2015 - 12:11pm

After beginning (then trial) Ipi/Nivo combo therapy in March 2015, I was kicked off after 3/4 treatments. However, scans in May indicated the combo worked well - all subcutaneous tumors were gone and my liver mets shrunk by 95%. Scans in August were stable. After a day full of scans yesterday, I met with my doctor this morning and I'm now a COMPLETE RESPONDER! We are doing a happy dance. 

Thank you to everyone who has answered my questions on this board. Your help and support has been tremendous, perhaps even lifesaving - I switched my care to MDA after everyone here urged me to see a specialist.

Also, thank you to everyone who participated in Yervoy, Opdivo, and the combo trial before me. Again, you may have helped save my life. 

I can't wait to get home, hug my babies, and to start planning my little guy's first birthday!



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