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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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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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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Anonymous's picture
Replies 2
Last reply 9/4/2014 - 6:35pm
Replies by: Anonymous, Janner

I just received the call that I have malignant melanoma.  I'm awaiting the pathology report by email.  The doc said it was stage 3 - but i don't know what classification system was used.  She said it was not thick and that i'd need WLE and i'd likely be good to go.  Apparently the report said the cells were close to the border of the excision, and as such, another excision was recommended.  Can anyone shed some light?



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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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Anonymous's picture
Replies 7
Last reply 9/4/2014 - 9:02am
Replies by: hannahcopeland1, Anonymous, RJoeyB, Tim--MRF

Can anyone tell me if they have taken temozolmide and whether it has been successful

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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

Just wanted to give you a quick and final reminder...

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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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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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cavsnut's picture
Replies 7
Last reply 9/3/2014 - 11:16pm

I got my results back from my SLNB today and one of the lymph nodes out of the four taken out was positive.. believe it was .9mm..So with that said opinions on getting the superficial nodes removed or going with ultrasound monitoring of the nodes until anything else shows up? I'm really leaning on not having anymore nodes removed at this time as I work standing for 10/12 hours a day. I know the side effects of having more lymph nodes removed from the groin is extemely high and with it showing up in only one of the four removed believe I'll play the 80% odds of it not being in anymore...thoughts?

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cavsnut's picture
Replies 3
Last reply 9/3/2014 - 11:11pm
Replies by: cavsnut, Bubbles, SABKLYN

I developed a seroma from what I've researched in one of my groin excisions from surgery last Tuesday where 2 lymph nodes were removed. Is this something I should contact my doctor about, or will it go away eventually? It's about the size of a Ping pong ball btw

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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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Cathy's picture
Replies 11
Last reply 9/3/2014 - 3:31pm

My world fell apart last week when I found out I have anal melanoma.   My colorectal surgeon ordered a PET scan and a CT, both of which I've completed.  We met last night with the multidisciplinary team at our local hospital's cancer center.  

I am so fortunate to find out that it has not spread, and I need to have a wide local excision to get clean margins.   I talked to my doctor today and she said she may possibly need to remove part of the sphincter muscle which would cause me to need a bag for the rest of my life.  I really want a second opinion, but there's not alot of specialists in this type cancer.   Surgery is scheduled for February 7.

Also, the PET scan showed a spot in the pelvic area that may or may not be the cancer in the lumph node, but the CT did not show it.  They said that if it was definitely the cancer both tests would show it.  It could just be a false positive.  Could be just part of the bowel   I will need to go back for another CT in 3 months to watch it.  

Anyone know of any specialists on the east coast?  I live in Delaware but will travel to where ever.   Johns Hopkins can't see me until February 25.   University of Pennsylvania's melanoma center referred me to a dermatologist.   I've heard about the Dana Farber center in Boston, and I have no problem flying  up there for a consult, but February 7 will be here soon.   I don't want to put off surgery as I know that this type of cancer is very aggressive.  

Anybody out there have any advice for me?  I just want to scream because I am so afraid and confused. Thanks for your help!!




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