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 3
Last reply 7/2/2016 - 4:02pm
Replies by: jennunicorn, Anonymous, 2smallpeas

Hi folks! I want to preface this by saying I do have an appt. with a Dermatologist for mid August.

I have one mole above my bikini line that has gradually changed in the last few years. It started off a light tan color and fairly small to now be about .25". Not only has it grown, but little dark brown spots are popping up on the mole. It resembles a chocolate chip cookie. 

Admittedly, the only reason I made the appt. was to appease my husband. Because this spot stands out from the rest and my Father being a melanoma survivor, I promised to make and keep the appt. I'm more curious than concerned at this point.

While I know that you can't diagnose cancer simply by looking, does this mole look to be concerning? 

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Aaron's picture
Replies 1
Last reply 7/2/2016 - 3:05pm
Replies by: debwray

So i am sitting here getting my drips and looking over my bloodwork. I see that my red blood cell volume is low again and continues to slightly drop the last three times my bloodwork was taken.  Just curious if anyone else recalls their MCV or MCHC being low.  Granted it is not that low but like I said there seems to be a trend where every time I get bloodwork done it is slightly lower. 

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Replies by: desertsun, beneficii, Janner

I've had some soreness when lying down lately, and I was able to localize it to these 3 areas (circled in green):

The pictures are taken from different angles.

The moles in question do look kinda strange. I have a doctor's appointment on 7/21 and I will get it checked out then.

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sallyandree's picture
Replies 4
Last reply 7/2/2016 - 2:30pm


Do you know of anyone who has Stage IV melanoma which traveled to their stomach? My significant other's melanoma was removed 6 or 7 years ago, but we found out in March that the stomach problems and severe anemia he had in late February were due to the melanoma traveling to his stomach. He has been taking the Opdivo and Yervoy regimen (soon will be starting just taking Opdivo every two weeks) and we are hoping for the best. But it still is a brutal regimen! I understand that melanoma traveling to the stomach is rare.

Thank you,


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sleepyt23's picture
Replies 6
Last reply 7/2/2016 - 12:48pm

Hi all. I was diagnosed with Stage 3b in November 2014 at the age of 31. My primary melanoma was just to the right of my spine with a depth of 1.6-mm and ulceration. Two sentinal nodes under my right arm were microscopically positive. I had the rest of those nodes removed and all came back negative.

At the time, the best treatment around, to my understanding, was Interferon. We talked about beginning treatment, but my wife was 3 months pregnant and we didn't really see too much benefit when compared with the side effects. So we opted out of the Interferon and went into a wait and monitor mode.

I've had numerous moles removed and have had two scans. So far everything has come back negative. I went to see my surgical oncologist about a month ago and he was rather adamant that I talk to my medical oncologist about Yervoy. He said that I'm considered high risk and I would likely tolerate the Yervoy treatment with minimal side effects. 

My wife and I met with the medical oncologist yesterday and we're running things through insurance to see how much I would be responsible for out-of-pocket. I hear that there may be co-pay assistance through the manufacturer to further reduce my expenses. There was also talk of having a port installed since I really only have one good arm as far as injections or IV's go. 

I'm curious how the port feels and what the procedure to have it implanted is like.


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CourtneyDMiller's picture
Replies 3
Last reply 7/2/2016 - 12:37pm
Replies by: Anonymous, CourtneyDMiller, DragonLadyRed


Ever since I heard my diagnosis had the word melanoma in it, i havent been able to resume normal life. I feel so guilty because i should be extremely happy it the was cut it out and you are done kind, but i cant go a hour without thinking about it. I'm constantly checking myself for changes in moles/freckles and feeling for lymph nodes. I do have 3 papable nodes in my groin that i would guess are under a cm - I just had an aytypical mole cut off my buttock and leg, so I'm assuming that is why those are able to be felt. I also can feel one on the right side of my neck and two on the right. They are small as well, but they continue to freak me out. Two days ago i have also noticed that a mole on my arm has began to have a burning sensation. I am just constantly worries about everything. I want more moles/freckles taken off, but the doctors tell me that they are fine, and i should be done being cut on for a while. I had a full body check by my doctor as soon as we found out, and have already had all suspicious ones removed that she picked out. I have an appointment with a well trusted and liked dermatologist in my aera for a full body check again on 7/19. The thing im most concerned about is my lymph nodes.. what do you all think?

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Anonymous's picture
Replies 6
Last reply 7/2/2016 - 12:20pm
Replies by: twolf9246, Anonymous, jvictoria

Hi, I am just curious if anyone can help interpret this report.  I went in today for a second shave biopsy and the doctor said this type of nevus is rare and they just don't know whether it is anything or not because it is difficult to distinguish from melanoma.  He said he didn't know why it didn't mention the spitzoid cells in the diagnosis.  They will call me again in a week or so when they get the results.  When they called me on Monday to come back in, the lady who called had no idea what it was, but said it was good and no melanoma, but she said really didn't know how to read the report.  The person who took me back couldn't explain it to me, either, and said ask the doctor, that he had rarely seen the terminology.  When the doctor came in and said it is still questionable, I was quite surprised and don't know if I should be worried or not.  Thank you very much for any help you are able to offer.  

It was read at a Dermatopathology Lab.

Microscopic Description

The sections demonstrate a shave biopsy in which there is compound melanocytic proliferation, consisting of junctional component exhibiting features of dysplastic nevus while the dermal component shows epithelioid and pigmented morphology with prominent nucleoli and moderate cytologic atypia.  No definitive mitotic figure identified.  The spitzoid dermal component inolves the deep margin.


Desmoplastic Compound Nevus (See Comment)  Comment: The differential diagnosis includes superficial aspect of deep penetrating nevus.  Nevertheless, since the lesion involves the deep margin, re-excision is recommneded to ensure complete removal. 


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quincy3068's picture
Replies 3
Last reply 7/1/2016 - 9:02pm

I am new to this form and have several questions.  I have numerous sun damaged spots on my face and head.  Some of the spots are crusty and others , lesions, bleed if I scratch them.  I have one on the right temple area of the face.  It hurts really bad if I push it in or rub it.  I feel like I am getting pin pricking that goes way down deep.  In fact any of them that I touch have that pin pricking feeling all the way down.  Any comments on these spots and bleeding lesions?

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Replies by: Bubbles, JoshF, MoiraM

I responded to Yervoy/Ipi. It shrank my tumours. It also took out my anterior pituitary gland and the damage is permanent.

When I go to see my endocrinologist and my oncologist, they both say that they are anticipating lots more cases of people with damage to their glands as a side effect of immunotherappy for cancer. They see me as as the first of many.

I imagine what I would feel like if my anterior pituitary gland had packed up but the Yervoy/Ipi had not worked. I have said that to them and they both hint that only people whose T cells had been activated by the Yervoy/Ipi would experience the damage to their anterior pituitary gland.

If that is so, I feel a lot better about all those people in the US who have NEAD and are 'doing' Yervory/Ipi because it has now been approved as adjuvant therpy.

Does anyone else know of evidence to support the hypothesis that the autoimmune side effects of Yervey/Ipi only happen in people whose melanoma cells are also being attacked?

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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Bradley75's picture
Replies 2
Last reply 6/30/2016 - 8:31pm
Replies by: jennunicorn, Janner

I had my every three month PET/CT this week and the came up with something that I am not sure about.  It reads as: new 5x10 mm FDG avid nodule or lymph node in the perirenal fat inferior to the right kidney.  They go on to say SUV max 3.2.  This is concerning for possible metastasis. 

Their recommendation was to come back and have another scan in 6 to 8 weeks.  They want to see what changes happen and either remove it or call it reactive.  I have had lymph nodes light up the scan in the past year that have been determined to be reactive lymph nodes, so that would be nothing new for me.  There was one under my right arm that had a fine needle, ultrasound biopsy performed on it and it came back benign.  There has never been one near an organ, if that makes a difference  The kidney one can't be handled that way so the only way to know what's going on is to have it surgically removed.

The issue I am having is the waiting 6 to 8 weeks.  My onc gave reasons why we should wait, but it is hard to be at ease about waiting.  The thought of it getting worse while we sit and wait is not good for the soul.  My care team is Mayo in Rochester so I think trusting their opinion is a decent option, but I hate waiting.  Anyone have any input?

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Ablessedfamily6's picture
Replies 2
Last reply 6/30/2016 - 7:21pm

Hello everyone and thank you in advance for any insight you can provide! I was diagnosed with stage 3b melanoma in 2007: 2.9mm ulcerated primary with micro mets in one lymph node. I was blessed with an aggressive surgeon and declared NED two months after diagnosis. I went on to participate in a gp100 trial at NCI NIH. After five years of clean scans, I was released from NIH and began follow up at UVA. I've had many, many biopsies over the years and everything has been caught at "mildly atypical". For some reason this year, I've had two spots make it to "moderate/severe" and also had two Basal Cells pop up. :-/

First question, is there anything else I could be doing besides the biopsies and waiting? The recent issues have me nervous. Currently, I have 3-5 biopsies every 3 months, blood work every 6 months and CT every year.  

Next question, any one know of any long term side effects from gp100? I'd never thought to consider the clinical trial as the cause of other health problems, but my general physician suggested it and now I need more info, but there isn't any. :-/ Since 2007, I have been diagnosed with Chronic Fatigue, Narcolepsy, Glaucoma, hypoesthia (sp?), peripheral neuropathy, migraines, inflammatory disorder of the skin, tinnititus, abnormal heart rhythms, tachycardia, hypoglycemia, dis autonomic and sluggish digestive disorder. The whole time we have been looking at MS as the possible cause, but frequent scans show no lesions. My dr said that the more research coming out on immunotherapy makes her believe that the trial could be the cause of my health problems. FWIW, before 2007 and between flare ups I am a very fit and active person. I bike and hike regularly and run whenever my muscles will allow it. Many of my specialists have billed me as the healthiest sick person they treat. I do respond well to prednisone, but only at 60mg+ per day and I hate to think the effect that is having on my body long term. 


Anyways. I would appreciate any opinions or insights. I feel like I'm losing perspective of the situation. I'm trying to stay grateful for the time I've been blessed to have, but starting to feel like a sitting duck that isn't doing anything to protect itself. :-/ Thank you again!

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Landlover's picture
Replies 16
Last reply 6/30/2016 - 12:31pm

Hi-  I am currently weighing my options for my stage 3C melanoma which I recently posted about.  One thing that surprised me was my Onc (Dr. Lao U of Michigan) said that he would get scans "every so often" vaguely and stated he'd do a brain MRI about once a year.  That seems too long to go to me.  What are other people experiencing as the standard for stage 3?

I am getting a little overwhlemed by all of the unknows, guessing, worrying, and not great options.  I want to have faith in my doctors and care, but I am worried.



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DutchCasey's picture
Replies 10
Last reply 6/30/2016 - 6:23am

Concerned might be too light a term.
A little about me, I'm 47 years old, male, with very pale skin, blue eyes, and blonde hair.
When i was a child my hair was so light it almost looked white.
Needless to say I had several very severe sunburns by the time I hit my teens. At that time I became aware of the risks of sunburns and have never been outside without a shirt since.

Fast forward to my thirties and I find a lump under the skin of my right thigh. Doctor says it a fatty deposit and leaves it at that.
Keeping in mind that I was raised to not complain about health issues and not be a hypochondriac, I felt a change in a mole on my upper back but thought nothing of.
Ten years later I find a scab a little lower than the first mole. Again impossible to see the area properly I peal the scab off. Guess what? The scab keeps reforming.
That area is now a jagged irregular mole that looks the same as the first one.
Last year I noticed a lump on my side under the skin over my lower ribs. Again thought nothing of it. Just another fatty lump. I did notice that I had pain under that area when I bent over, like a bruised rib. Again thought nothing of it. I had three shoulder surgeries over the last couple of years and had gained quite a bit of weight from being sedentary and just thought it was caused be that weight gain.
Couple of years ago my wife noticed that the original mole on my upper back was flaking. Middle of winter and I had some dry skin so again thought nothing of it.
Since the first lump by my ribs I have since developed three more on my torso and one in the thigh on my left leg.
Last week I was with my GP checking out the scars from the shoulder surgeries as they are developing keloid scars which is odd as all previous scars have always healed perfectly.
I decide, more like remember, to ask about the moles on my back. He takes one look and all he says is "oh my".
He immediately sends a referral to a dermatologist. This being Canada there is a wait involved. Can't see the dermatologist till july 19th.
Strange thing is that the dermatologists office called that day and said I am on top of the waiting list for any spots that open up due to cancellations.

Sorry for being so long winded.
Just how concerned should I be? Normally I don't worry too much about health issues as the odds are always in my favour but as I've been reading many pieces are starting to come together.
I'd be lying if I said I wasn't freaking out.

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Kimba67's picture
Replies 6
Last reply 6/30/2016 - 5:53am

I had my surgery Wed, My BF, Sister, and both sets of parents came to support me.  I didn't know if they would operate becasue I was having hypertension issues that could have stopped the process.  I waited one month to have the proceedure and now I have a 7inch scar, 3 inch scar below that and a very sore arm pit. 


I went in for the mapping and boy does that radiation medicine  All I could say was "Dayum"...4 injections and the tech thought the needle was the worse part...HA

I woke up and was ready to go home.  The next couple of days were a little fuzzy, but I was verticle and moving as well as could be expected.  I was standing in line at the store Saturday and this man behind me asked me what happened.  I smiled and told him I was sky didving when I was clipped by a glider.  My mom giggled and he looked at me so strange.  They he said "noooo", I smiled and said "no"...I had cancer removed. 


It's funny how making someone else smile, made three other people smile.  My amazing physician and his team did a great job, He feels he got it all, but now I am waiting on the pathology report from my lymph.  No matter what we go through, we are never alone.  God is good.

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