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.

Expand/ Collapse Topic
Replies By
View Topic
sgrain's picture
Replies 7
Last reply 11/21/2015 - 8:47pm

I've been coming to this board since 1998 when I was first diagnosed stage 3.  As one poster below said, I haven't been on the board much because I've been busy living my life but I try to post when something significant (good or bad) happens.  This time it's something good.  I hope it gives many of you hope and insight to how these immunotherapies work.  Here's a brief history of my journey:

In 2012, MM was found in my right lung which was surgically removed.  In 2013, MM came back in both lungs.  I then tried the following drugs:  Ipilimumab (didn't work), Zelboraf (worked a little, another right lung tumor disappeared but then left lung tumors grew), Dabrafenib and Mekinist (didn't work), Keytruda - worked but with complications.

I was on Keytruda for 9 months.  While I was on it, my first 2 PET scans (3 months apart) were getting worse and a lot of metabolic activity but my oncologist said to be patient so I stayed on it.  At 9 months, I had GI problems which turned out to be 2 bacterial infections so I had a CT scan and stopped the Keytruda.  A month or so later, I had another CT scan which showed decreased turmor burden in the lung.  I then had a PET scan and got the same results, the largest tumor was almost non-existent and very little metabolic activity in another small tumor.  2 months later, PET scan showed No Evidence of Disease (although my Dr. said No Evidence of "Active" Disease).

Both Mayo and my Oncologist say it is likely that the first 2 PET were actually due to internal inflamation and not tumor growth.  When I got the infection and stopped treatment, things cleared up and we could actually see the tumors disappear.  I never thought I would see this day, being NED, but have hope for all of us dealing with this terrible disease.  Good luck everyone!

Login or register to post replies.

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? 


Login or register to post replies.

Gwenmorgan's picture
Replies 4
Last reply 11/21/2015 - 7:02pm

I have had one dose of ipi/nivo on 11/12 with no immediate reactions.  

Anyone else have strange allergic type reactions on everyday food/activities?

Sunday, I had leftovers for dinner (seafood)  and about an hour later my mouth started tingling and my upper lip swelled up.  Also, I had used the same face lotion I have for years.  I took Benadryl and it went away after 2 doses a few hours apart.  

Yesterday, I was searching for some positive data on lepto mel and my right eyelid swelled up.  I took some Benadryl again but not better yet.  Waiting for phone call from Clinic, it isn't an emergency or anything just strange, dry and itchy and swollen, like pollen got in there while sitting in my office typing.  Only one eye too (no makeup or anything)

no fevers.

I also have rosy cheeks like a painted Santa.  Braf/Mek caused bright rosy checks but I have been off that for a few weeks.

My  thought is that my overly sensitive skin has become ridiculously overly sensitive but I wanted to see if others had bizarre skin reactions?

I have 9 tiny brain mets, 5 treated with cyber knife but still there, much smaller than they were last Spring. 

Login or register to post replies.

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)

Login or register to post replies.

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! 

Login or register to post replies.

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? 


Login or register to post replies.

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.

Login or register to post replies.

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 

Login or register to post replies.

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.

Login or register to post replies.

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.




Login or register to post replies.

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!


Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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.



Login or register to post replies.

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?

Login or register to post replies.