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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Beehappy's picture
Replies 8
Last reply 11/21/2015 - 11:30am

My husband is on the ipi vs. nivo trial for stage 3.  He has had his primary - 5mm Breslow, no ulceration, mito rate 3 removed from shoulder and had a total lymph dissection under his arm - 40 nodes removed - 2 nodes positive with micro mets.  He has had 3 possible doses of ipi (which is known to have skin side effects).  Today the oncologist focused on a red spot/lump under he arm about an inch from the scar from his CLD.  It looks like a spider bite but since it has some firmness they are thinking reoccurrence.  Going in for a biopsy tomorrow morning - so it will be a long weekend of waiting for results.  

If it is positive for melanoma he is out of the trial.  We will be exploring other options for treatment.  Wondering what I should be researching, what people have found success with.  Also trying not to freak out about the possibility of moving to a stage 4 diagnoses.

Just as we were finding our "new normal" it feels like the rug getting pulled out from under us again.


Rebecca (wife of a stage 3c warrior)

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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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Anonymous's picture
Replies 3
Last reply 11/20/2015 - 11:45pm
Replies by: stars, Anonymous, Janner

I had a stage 1a melanoma removed in September. Breslow level .5, 0 mitosis, no regression, no ulceration, Clark level III.  Clear margins after WLE. No sentinel lymph node biopsy was done. I feel very lucky that it seems to have been found early (by my gynecologist by the way). I have lots of funky looking moles and haven't been entirely happy with my dermatologist as she seems too rushed and rather scattered at times (not knowing the reason I'm there for an appointment for example). 

Anyway, since September I've had total body photography and my derm did a full body skin check. Even though I have lots of moles she didn't think  I need to worry about another melanoma at this point. Just check myself monthly for changes and go in every 3-4 months for her to check my skin and lymph nodes.

I made an appointment with a new dermatologist to see if I might want to switch to someone else who would be a little more aggressive. The day before the appointment (a week ago last Monday) I went on a 3-4 mile hike. That night I noticed a mole under my arm (armpit area), looked inflamed. There was redness around the base and the mole itself was darker. Totally freaked me out and after looking at my pictures knew it looked different from just a month earlier when I had the pictures taken. 

The next day I saw the new dermatologist who checked me over and thought the mole under my arm was probably just inflamed from hiking but had his nurse do a biopsy of it and another mole I didn't like the looks of on my stomach.  He called today and said the mole on my stomach was fine. He read me the report on the other mole and the pathologist  called it a benign neoplasm but he wasn't able to 100% rule out melanoma because the sample was small and there was blood around the base (I had noticed that it didn't look like a lot had been taken from this biopsy. Normally there's quite a hole left but this was really small and looked like she just took off the very top) . He said the pathologist had done extra stains but to be on the safe side recommended an excision. The doctor told me not to lose any sleep over it.  Of course, now that I've already had one melanoma this is scaring me a bit. Someone is supposed to call me to set up an appointment for the excision next week. 

Any thoughts? 


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Anonymous's picture
Replies 4
Last reply 11/20/2015 - 9:37pm
Replies by: Anonymous, liberty04281

Can someone explain to me why nodular is so much more aggressive then others. I mean I know its the cancer that grows downward but once its in your lymph nodes are the cells more aggressive then the other types of melanoma cells.

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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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Nanners10's picture
Replies 2
Last reply 11/20/2015 - 4:27pm
Replies by: Nanners10, jenny22

Hi all, I am new to posting on this website but not new to reading and learning from this website. A quick background of my situation. I was first diagnosed in 2002 with a 2.24mm MM on my shin. WLE was performed and that was all that was needed until January 2014 when I found a lump in my groin. FNAC was performed and MM was found. I had a superficial lymph node dissection done in March 2014 only 1 out of 4 lymph nodes came back with MM. I entered the ipi vs interferon trial in April 2014 (randomized to receive the lower dose of ipi) and completed the protocol in June 2015. I have just received news of a regional recurrence to two lymph nodes. Now I am back to figuring out the next step in this battle.

I am currently waiting for surgery to remove the deep inguinal lymph nodes and have some questions that I am hoping some of you can answer.

1. Are the deep inguinal nodes enough to remove at this point? The CT scan I had last week doesn't show any involvement of iliac or pelvic nodes but the deep ones were clear when I had my last surgery and obviously something was still kicking around.

2. Should I be pushing for a much more aggressive surgical course including removing the iliac nodes?

3. Is anyone aware of any trials that are open to someone that has completed an ipi trial (unsuccessfully) and is still stage 3? From what I can see most are open to unresectable or stage 4.

Any guidance or help that can be provided is much appreciated.

Nancy H.

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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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