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.

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My husband was diagnosed in May 2014. His disease has stayed in his liver and has the GNAQ mutation. He has cutaneous melanoma techincally but it is behaving much like Ocular Melanoma. He's tried keytruda, a tcell therapy clinical trial at NCI, and ipi/nivo. He's also done a few TACE procedures to try and stamp out the tumors. 

He's still seeing progression and we were just informed about Isolated Hepatic Perfusion with Dr. Pingpank at UPMC in Pittsburgh. He's signed up and approved for surgery December 7. All of his doctors agree this is the next best option. Has anyone done it? Any successes/failures? Side effects? Recovery time? Any info would be great it's very hard to find.




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doublejen's picture
Replies 10
Last reply 11/20/2015 - 2:34pm

Hi all - my husband was diagnosed with a stage 1b melanoma on his ear in September and had a wide excision and SLNB earlier this month. The surgeon took two lymph nodes as he said the signal was fairly high for both. We got the path report last night, and the doctor said that the second/father away lymph node was clear, but the first had some cancer cells - but such a small amount that further treatment isn't indicated. He's still being staged as T1b, N0, M0. (I believe. I haven't seen the path report, we got the results by phone.)

Y'all, my dad died from a melanoma on his ear in 2002, so needless to say, even a small amount of cancer cells makes me nervous. My husband is being treated at Dana-Farber (we live in Boston) but I'm wondering if we should seek a second opinion.

Thanks for your wise advice!


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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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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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