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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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     

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
Anonymous
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!

Megan

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Anonymous's picture
Anonymous
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 pillows...my 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!!!

Josh

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.

Matt

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Happy_girl's picture
Replies 4
Last reply 9/3/2014 - 12:45am

Hi everyone!  I just recently ( last Thursday) had a clnd under my left arm.  The had found a few micro melanoma cells in the sentinal node- so had the clnd.  I was curious what your recovery was like... Length-time- range of motion- weight limits with holding objects.  It's been hard because I haven't really been able to pick up my 7 month old for almost a week.  Also- it's so hard not to be scared and discouraged.  I'm praying that this surgery takes care of any would be melanoma left. Thanks for your thoughts!  

Also- does it sem like there will be more options than interferon for 3a soon?  I keep hoping that some of these promising new drugs will filter to 3a soon.

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eturner's picture
Replies 4
Last reply 9/2/2014 - 10:06am
Replies by: eturner, Owl, Ed Williams

Here is an update on my husband... He has been on the braf combo for about 5 months now he stared having a slight amount of pain in July ( Oncologist said was probably nothing and CT showed stable bone mets), I knew in my gut something was wrong. Two weeks ago he finally said the pain was more than he could handle and he needed to go back for more scans..... CT showed stable bone mets, Doctor agreed to do MRI due to pain...... Friday he had his MRI, as of this moment I have yet to hear from his Oncologist.... His PCP however has callled me and said that the MRI shows his L5 Vertebra has a burst fracture due to tumor growth and a very large very deep met in is right femur, along with mets to spine, hip and pelvis from pervious scans!!! I am beside myself and scared out of my mind..... My husbands PCP said he was shocked no one had called us considering the severity of the L5 brake.

 So I know the combo has run its course and I know PD1 is the best option we have, I'm just nervous about what I've read about the time it takes for med to take affect. Advice and Support needed... THANK YOU!

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Schwan-a-cure's picture
Replies 1
Last reply 9/2/2014 - 1:17pm
Replies by: RJoeyB

Has anyone had proton therapy for brain mets?  Do you know if they can treat multipules at once or if they can treat more because of protecting uneffected tissue?

Thanks,
Allison

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Exhausted's picture
Replies 7
Last reply 9/8/2014 - 11:08pm
Replies by: Exhausted, Patina, Janner, Anonymous

Hi,

I have a very dark brown mole that is literally 1mm in diameter that I've had for years that I am a bit concerned about.  My dermatologist has no concern, but I started searching the internet and found multiple stories of people talking about "pin head sized melanoma" which are getting me a bit worried.  However, I can't seem to find any pictures to compare.  Does anyone here have pictures, links to pictures, or experience with a literal pinhead sized melanoma?

Thank you!

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