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 2
Last reply 9/4/2014 - 7:52pm
Replies by: JoshF, Anonymous

I heard University of Chicago just got Dr Jason Luke from Dana Farber under Dr Steve Hodi, which is great because Dr Gajewski at U of Chicago travels constantly. 



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Replies by: Melissag0624, Ginger8888, none1234, Anonymous

Hey guys,

I'm a bit lost and was hoping for some advice. I was diagnosed with a benign spitz naevus at the age of 13 which was surgically removed back then. In 2010 i noticed a small lump on the edge of the scar tissue from the old excision and had it removed. Back then it was identified as excess scar tissue (hyperplastic scar tissue). The following years the lump returned and was removed 3 times (always approx 12 months in between) with identical characterization.

Now in 2014 the last excision was reviewed with more care and identified as a desmoplastic melanoma with slightly increased proliferation no ulceration and no apparent metastasis in the draining sentinels, no circulating S100 in the bloodstream and a clear sonography.

Due to the fact that the tumor was mistaken for hyperplastic scar tissue there was never a clear staging or assessment of invasion depth.

After the last excision the area stayed free of any unusual changes and i entered a regular postoperative screening schedule. 

Now to the crucial part: My treating institution scheduled me with a low dose intron-A therapy which is to be continued for 18 months. I am on it for a month now and the side effects are very very very unpleasent.

To my understanding the overall benefit of Interferon for survival was seldomly demonstrated. 

Does it make sense to continue the treatment and risk my general good health and healthy mental state (retinal damage/depression/general immunosuppression)? I would suspect that the reoccuring growth was due to the fact that it was never fully removed and always still there right after surgery. Overall malignancy was suspected but not finally clearly demonstrated. 

I can not get a definite statment from my responsible institution.. their remark was that they have to recommend it when the staging is not clear.



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Anonymous's picture
Replies 2
Last reply 9/4/2014 - 8:51am
Replies by: hannahcopeland1, Anonymous

I am a stage 4 patient with mets in my spleen liver and brain. I have tried vem and wbr but neither have worked. I was told that I will be put on temozolmide next but oncologist running out of options. Just wondered if anyone else has been in this situation and how they cooed


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Gene_S's picture
Replies 1
Last reply 9/4/2014 - 3:46am
Replies by: rick1981

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REPLAYS are available for 48 hrs. for any shows that you have missed.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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MacMac's picture
Replies 5
Last reply 9/3/2014 - 11:28pm
Replies by: Lil0909, MacMac, Anonymous

I just received my surgery date for the WLE and SNLD (September 12).  When I spoke to my Dr he indicated that I would be having a lymphoscintigraphy the day of the surgery.  I received a phone call from his surgery coordinator and she indicated that my Dr. ordered a lymphoscintigraphy to be conducted 5-7 days before my surgery (in addition to the one the day of).  I have an appointment with him for a pre-op on Monday (he is out of the country).  Do any of you know the reason for having two of these procedures and why 5-7 days before?  Thanks!

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logogriph's picture
Replies 2
Last reply 9/3/2014 - 8:18pm
Replies by: logogriph, Janner

My family has a somewhat distant history of melanoma (grand-relatives and some cousins). I'm 21 and I'm going to the dermatologist next week to get a flaky and generally abnormal birthmark looked at (and hopefully biopsied), and since I've never done this before I have some questions and concerns that I'd be really, really grateful if anyone could answer.

Right now, I'm trying not to think too far ahead and scare myself, so my only questions are about costs and procedures right now. I don't have insurance, and I don't have a lot of funds to spare at all. It's taken me months to scrap together enough just to cover the 110$ office visit fee. I know for sure I want my birthmark biopsied, but I also have a small (about 2-3mm) atypical nodular mole on my abdomen that I might want biopsied too. So, I want to ask how much a biopsy would cost? And would I have to pay this fee or any portion of it upfront? Will I be restricted to only certain biopsy types, like shave? If a doctor doesn't think a mole should be biopsied, will they generally refuse to do it or will they agree for my peace of mind? Will I be given any anaesthia for a biopsy?

I know the costs probably vary from clinic to clinic, but any kind of information could help really.

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Maddix07's picture
Replies 5
Last reply 9/3/2014 - 11:38pm
Replies by: Lil0909, Anonymous, MacMac, Janner

Hello all! I am new here. I am 25 years old. I went to the dermatologist yesterday to have a mole checked. She looked at it for a long time and had her student that was training look at it. She said it wasn't worthy of a biopsy at this time but I need to keep an eye on it. I am still very worried about it. I caught notice of the mole over the past few months. It is a round brown flat mole with a black dot on one end. The black dot is what scares me. Should I trust the dermatologist and wait it out or see someone for another opinion.
Thank you!

Also is there anyway I can post a picture of it?

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Anonymous's picture
Replies 2
Last reply 9/4/2014 - 10:37am
Replies by: Ginger8888, Anonymous

By Lynne Adkins

PHILADELPHIA (CBS) — Pilots and cabin crew have a new worry – skin cancer.

Working on an airplane puts you at high risk of getting melanoma, according to a new study in the Journal of the American Medical Association Dermatology because of the exposure to higher levels of UV radiation.

Dr. Jeffery Farma, Co-Director of the Cutaneous Oncology Program at Fox Chase Cancer Center.

“Pilots and crew members are at about double the risk of having melanoma over the general population, which is interesting,” says Dr. Jeffery Farma, Co-Director of the Cutaneous Oncology Program at Fox Chase Cancer Center. “This is an occupational hazard potentially that puts them at an increased risk just from where they’re working.”

He suggests they pay attention to any changes in the skin and see a dermatologist annually.

The study didn’t mention frequent fliers, but Dr. Farma says they should be on alert as well.

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Kenny's picture
Replies 5
Last reply 9/12/2014 - 12:48pm

We lost a great man to a yearlong battle with Melanoma on 9/2/14.  He was my father in-law.  I have loved and respected him for 38 years.  His Melanoma was found too late and was very aggressive, he fought the battle hard but it took him without notice.  He had brain tumors that were not yet detected; he was scheduled for a MRI on 8/29/14.  A blood vessel that was feeding one of the 2 tumors in his brain burst on 8/25/14 and he had a severe stroke.

I am so thankful for the time spent with him over the years and especially the past year walking through this terrible disease with him.  I found out on 3/25/14 that I have Stage 3a Melanoma, this drew us even closer as I could now personally relate to his fears and concerns.  

On 8/23/14 my mother in-law, father in-law, wife and I went out to dinner to celebrate our wedding anniversaries together; theirs was 57 years on 8/12/14 and ours was 35 years on 8/26/14.  I am so glad for the memories. 

Please pray for our family and for my wife, as she not only grieves for her daddy but also fears for me.

Thank you,


Ken Sears

Stage 3a 

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theresar's picture
Replies 2
Last reply 9/2/2014 - 4:55pm
Replies by: RJoeyB, BrianP

I frequently read on these posts people talking about their tumor burden or tumor load. What exactly does that mean? Does it have have anything to do with the LDH factor or some other lab tests or just the number of tumors one has.

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Anonymous's picture
Replies 5
Last reply 9/2/2014 - 3:38pm
Replies by: Anonymous, Janner

Hi, everyone.

My husband, age 72, had a melanoma removed in May with wide excision. At the time, the plastic surgeon said that for the most part the margins were clear but one cell remained.

Recently, small, pink bumps have been coming up on his scalp. He says they hurt when he presses on them. 

He is supposed to have an appointment soon with his dermatologist. I am going to go into the appointment with him because he doesn't hear well and I have some questions.

We haven't been given a pathology report - is that typical? So I know nothing other than that my husband said the dermotologist told him this was the 'best' kind (husband's interpretation) to have. However, the plastic surgeon, whom my husband knew professionally, asked him, "You do understand that this is cancer?" and told him it was malignant melanoma.

Any thoughts are most welcome!

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mwcollins's picture
Replies 2
Last reply 9/2/2014 - 4:51pm
Replies by: BrianP, RJoeyB

Hi all! Kevin & I have been quiet for a while since his last surgery and scans. Stage 4, but NED. Lately he has been having some mild discomfort in his belly on the opposite side of where he had his small bowel resection. He thought he might have tweeked it at the gym, but it just won't go away. As I know you are all keenly aware of being hyper sensitive to anything out of the ordinary, he is at the doctors. I am so praying for it to be nothing, but can't rule anything out either. Please keep Kevin in your thoughts and prayers. Thanks!


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Anonymous's picture
Replies 3
Last reply 9/2/2014 - 9:19pm
Replies by: JoshF, RJoeyB, mwcollins

I'm stage 4 and since May I've had slight neck pain. Many of you a familiar with being hyper-sensitive but I think it's always better to err on the side of caution. It's nothing excruciating and some days no pain at all. I'm not sure if it pillows...I've been using newer foam wife stopped because it hurt her neck. I also tweaked my neck good years ago in Marine Corp. I wasn't real kind to my body when I was younger. Anyway, thoughts from anyone who can tell me what a met to spine or bone feels like? I have scans Oct 3rd....yes getting nervous!!!


Let's work for better treatments....for a cure!!!!

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MattF's picture
Replies 5
Last reply 9/5/2014 - 2:37am

I dont know when or how but now I'm a little confused on the Ipi progression....

Isn't it that the yervoy itself works late? or the side effects come late etc?

I'm on my 2nd infusion and my visible palpable tumors in soft tissue areas are smaller.....just not looking for false hope lol.


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