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 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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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 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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5dives's picture
Replies 35
Last reply 11/19/2015 - 9:52am

Hello all, 

I am currently stage 3b (T1bN1aM0) and have been recurrence free since July 2014. Hooray! 

I see my oncologist at Loyola Medical Center in Chicago and have an oncologist at Memorial Sloan Kettering in New York. 

Both of those doctors advised me against having a complete lymph node dissection because my one node was *only* micro positive for melanoma and both of them felt having lymph nodes is more important for long-term health than having them out when the risk of spread is low. This decision made me nervous, but I decided to go along with it, and I'm still solid about it. 

I did not have interferon because (again) both doctors felt that the side effect profile of interferon and the low probability that it increases survival made it not a good choice for me. 

Now...enter Yervoy. 

I have been NED for 16 months with no treatment beyond WLE / SLNB. I am seeing a dermatologist every 3 months and the oncologist every 4 months. 

Can you all tell me how you're going about deciding whether or not to do adjuvant Yervoy? 

I'd really appreciate hearing your thought process on this big decision. 



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JakeinNY's picture
Replies 11
Last reply 11/18/2015 - 9:03pm

I haven't been on our site for about 2 years, but I'm so happy to find out today that my PET/CT scan was negative. I'm now 8 years NED since my surgery performed by Dr. Dennis Kraus (thank you Dr. Kraus!) in New York. Although my surgery was done at Sloan Kettering, I am tremendously grateful to my oncologist, Dr. Anna Pavlick at NYU, for the fantastic advice, warmth, and general down-to-earthness she has always shown. I would tell anyone with melanoma to go to Dr. Pavlick at NYU. Her and her staff are the best and they strictly deal with melanoma. If you don't love dealing with Dr. Pavlick, you will not like dealing with any doctor! I thank God that I chose to go with her after my surgery back in 2007.

Do the best you can.

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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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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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