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
Anonymous's picture
Replies 1
Last reply 6/14/2016 - 7:54pm
Replies by: Anonymous

Noticed a mole about a year ago on my leg.  It looked brown, was very small maybe 3-4mm but was a perfect circle and shiny.  I picked at it and poked at it for a year and it began to look pink, it never grew or changed.  


I i had my dermatologist remove it. He used a shave biopsy. I got a call two weeks later saying i needed to come back in.  The Dermatopathologist diagnosed it as a spitz Nevus.   I know these moles are oddities and the doctor told me mine really didn't concern the dermatopathologist.  This was at a rather large practice.  So they removed more. I believe 4mm-5mm margins and I got the word yesteday that no cells were detected and the original shave got it all. Is this a large enough excision ? 

Login or register to post replies.

JoshF's picture
Replies 7
Last reply 6/13/2016 - 10:53am

Hi guys-

Thought I'd check in after my visit at MD Anderson. Looking at a t-cell trial with Il-2 followed by ipi. A bit different than trial that I do qualify for at Loyola Universiy Med Center. Not sure which would be better as they do cell modification at Loyola. Either way I have to have the specific HLA expression and Mart-1 to even get in trial at MD. Friday afternoon apt wasn't ideal but started moving things along....I hate the waiting, it's difficult. They're also setting me up with surgeon to harvest tumor for possible TIL in future. They offered that but they're out until Aug/Sept as they only can do 2 patients per month. I hate the decisions, the waiting...what's best etc.. Thank you Ed for sharing a bunch of info in a previous post. The TCR and TIL therapies sound promising but doesn't seem much better than PD-1 in terms of response. In future the doc said things will probably only improve as they learn to tweak with modifications, combine other therapies. At this point being wild type, what are my options? We all need research and options to accelerate....I know myself and many others would like to see kids grow up...maybe meet a grandchild. Sorry, tired and rambling. Thank you to everyone for support, sharing info and giving inspiration. Praying for all of you!


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

Login or register to post replies.

beans920's picture
Replies 4
Last reply 6/13/2016 - 11:36pm
Replies by: beans920, Bubbles, Polymath

I've posted before but will give and update now of my treatment plan.  Been through the ippy and interferon trial and had great response other than pituitary burnout.  I also had a spot left on my sternum that looked dead with no activity.  About a year later it fired back up and was caught in my quarterly cscan.  I underwent radiation which again appeared dead on cscan  but now 6 months later its back and growing.  Been seeing an oncologist in Wisconsin but he's sending me back to Mayo which started my original plan.  Arrived at Mayo monday had Pet scan , bloodwork,and chest xray and saw my oncologist on Tuesday morning.  Looked at the petscan and He believes previous radiation missed the spot or wasn't strong enough.  He is not happy with past treatment of radiation.  I am set up for the start of Pembro on Wed. and will see the radiology department to plan another radiation assault on this thing.  Pembro went fine and radiologist is pissed off.  My heart is partially in the way of a magnum blast of radiation so I will head back to radiology on Thursday to see if deep breathing will pull my heart out of the way.  Thursday morning out of underwear but comando is fine.  Had test in radiology dept. and Dr. is very happy as I am able to move my heart out of the blast range.  Came home Thursday evening and Dr.s and radiologist are taking next week to plan it out.  Tentative schedule is 10 treatments over 10 days beginning on 6/20 and getting another dose of Pembro on 6/29.  Word of warning for radiation,  Make sure the first attempt is done with a hospital that knows what there doing.  Mayo Dr. says they used kids gloves the first time and nearly screwed this up.  I will keep in touch with how it goes.  Beans920

Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 6/11/2016 - 4:47am
Replies by: Anonymous, jennunicorn

So I had a single dark stripe appear down the center of my toenail 6 years ago. It slowly expanded toward the edge of my toe. Id asked my Dr about it a couple times but they never seemed particularly concerned. Upon moving and seeing a new provider about a different issue, he noticed it and referred me to a dermatologist who wanted to biopsy it immediately. He called a couple weeks later and said everything came back "fine", being naive I accepted that explanation. He said all color was removed and the nail should grow back weird since he cut into the nail matrix to biopsy, but the color should be gone. If the color grows back I should return to the dermatologist.

The nail grew back with no color. That was November 2012. Starting in probably summer 2014 I noticed some color coming back on the edge of the nail. I figured it was dirt under the nail due to being misshapen. By spring 2015 I could tell it was definitely color growing back. Saw a new dermatologist. She was hesitant to biopsy again unless it grew past its original parameters. Moved this past year. Noticed it did in fact grow past the initial parameters. Just went to get it checked and biopsied yesterday.

Any hints or advice you could share based off of picture?

If it was a melanoma, how is that possible after dealing with it for 6+ years?

Login or register to post replies.

hrisi930's picture
Replies 10
Last reply 6/12/2016 - 7:10am
Replies by: hrisi930, wifeofron, jennunicorn, Janner, Anonymous, LaurieGayle

Hello everyone!

I was recently diagnosed with minimal deviation melanoma, stage IA, Clark II, Breslow II (0.79). 

The mole was removed by a plastic surgeon more than a month ago with elliptical excision, 4mm margins. The pathology report indicated clear margins.

The oncologists didn't say anything about WLE, they didn't even ask what were the surgical margins.

Just recently I read that there is a standard in melanoma WLE and that there should be 1cm margins for StageIA.

I might be overreacting, but all I want is to know that everything was done right.

The scar itself looks totally normal, however there is some tenderness that slmost feels like my melanoma used to (now I know this might be the result of my obsession that I need WLE).

So what do you think about that? I will greatly appreciate your comments!

All the best to all of you!

Login or register to post replies.

Anonymous's picture
Replies 7
Last reply 6/14/2016 - 9:46am
Replies by: JuTMSY4, DonnaK, Mat, Linny, Anonymous, youngann

I'm in the Philadelphia area and would like to know which hospital to go to for Melanoma consult or treatments. University of Pennsylvania, Fox Chase or Jefferson. Do any of them have Melanoma Clinics that can be recommended or particular doctors that are well known in the Melanoma field?


Thanks in advance. 


Login or register to post replies.

stars's picture
Replies 6
Last reply 6/13/2016 - 6:07pm

I think it's roughly my one year anniversary... probably a little more, I think I had my first (stage 0) melanoma removed March last year. The rest of last year was a bit of a nightmare, with two more moles removed at my insistence, both stage 1 melanoma. So three melanomas in the space of about 4 months, then fortunately a few dysplastic nevus and nothing more.

Apart from the physical discomfort of three WLEs and a few more biopsies, it was the mental discomfort that really got me. I was so anxious for so long... primary because the stage 1 mels removed did not look like anything much to the doctor and were only removed at my insistence. This got me thinking about how possibly I have other very innocent looking freckles that are in fact melanomas. That said, they were weird enough/subtly changed enough to ring my alarm bells, so as Janner often says, we are our own best advocates for what's normal for us and what makes us uncomfortable.

I think I have had four full-body skin checks since March last year - two by the doctor who did the WLEs, one second opinion by a dermatologist, and one by my everyday GP/doctor. From now on I'll only go to my normal doctor every six months or so as in Australia GPs really are as competent as anyone when it comes to spotting skin cancer. The GP who originally did my skin checks is a 'skin cancer specialist' but actually just a GP with a bit of extra training.

In my darker moments I feel really unlucky - three melanomas! On the other hand, in Australia, it's not uncommon to find much younger people than me wiht much later stage diagnoses, so I'm not complaining.

I guess I'm posting partly as a reflection on a pretty nasty year, partly to give a big shout out to MRF MPIP people for their support and info, and partly to reassure newbies that you do eventually come to terms with the horrible mental shock of melanoma. If anything, I am a whole lot more appreciative of life, a whole lot less likely to put up with things that are not right for me and (dare I say it) this diagnosis has really been a wake-up call that I maybe needed. It's made me really focus on the things I want to do and be in life - some I know I can achieve, others require a bit of good luck as well.

All the best


Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 6/13/2016 - 4:23pm
Replies by: Aaron, youngann

Hi, I had a stage 1b melanoma removed from my mid upper back about a year ago.  For the last couple of months I have been experiencing some pain my upper back around the scapulas.  When I stretch it does appear to relieve the pain so I don't know if I just pulled my back or if I should pursue this further with my doctor.  It's a dull pain and it comes and goes.  Anyways has anyone experienced this? Thanks Mark

Login or register to post replies.

Shane740's picture
Replies 2
Last reply 6/9/2016 - 10:25pm
Replies by: Janner, jennunicorn

Hi all I had a level 1 removed and now they want to take 4 more moles off should I be worried what are chance off having two or three Mel at once worried sick


Login or register to post replies.

Brent Morris's picture
Replies 3
Last reply 6/26/2016 - 1:50pm
Replies by: Anonymous, Brent Morris, Tim--MRF

Dear Tim, 

 I appreciate your efforts at ASCO. I do wish you would clarify your reporting in regard to interferon. I cannot, after searching assiduously, find any abstracts, posters or sessions at ASCO 2016 in which data for interferon as an adjuvant in Stage lll melanoma, as the sole agent or as an arm of a trial, is reported. As such, I have posted the only data available (from 2012) in which a "marginally significant" 3% effect is found on overall survival in a large cohort, The study also notes that 37% of patients had to stop due to toxicity.

What specific data are you quoting?  I think it is important because failure to put interferon in its marginal place (Dr. Kirkwood not withstanding) may cost lives and lead to unneeded suffering with minimal to nonexistant benefit. Thanks


Login or register to post replies.

jennunicorn's picture
Replies 23
Last reply 6/16/2016 - 11:37pm

Had another PET/CT on Tuesday. Just got results this morning. The only new thing was a 3mm spot on the upper lobe of my left lung. It was not there on previous scans. My onc is not worried about it since lung spots can be so many different things and this is tiny. Will be keeping a close watch on it with the next scans. Everything else looked good. 

My joints have been really bothering me the past week. I have a history of joint problems, mostly in my finger joints. They're killing me to type but I like torture I guess. My knees, wrists, elbows, hips.. they all hate me. Some days I feel like I am 29 going on 89. But, it's not debilitating, I can walk around and go to work and moderate my activity. My onc didn't want to put me on a steroid right now, she'd rather hold off for as long as possible and hopefully the joint issues resolve on their own and I don't need steroids. She prescribed Percocet for the pain, just to have something a bit stronger than aspirin or ibuprofen that do absolutely nothing to relieve the pain. I don't like taking strong medication, I still have a whole bottle of Norco that I was given after my surgery, took that stuff one day and it made me sick so I never took it again. I'll try a half a Percocet, but doubt I'll want to take it for long. I've tried anti-inflammatory foods like tumeric and pineapple, but at this level it does nothing. Any other suggestions for joint pain would be appreciated.

Hope everyone is enjoying the beginning of summer.

Jenn -  IIIC

Login or register to post replies.

CCARNEY83's picture
Replies 17
Last reply 6/13/2016 - 1:21pm

Hello! I have been diagnosed with stage 3 melanoma with 3 of 28 lymph nodes positive and a negative PET scan. I had the first visit with my oncologist today and I will be getting Interfuron starting on June 20th. I am very nervous. I am 32 and a mother to a 2 yr old, a teacher and a wife. I have tremendous family and friend support which is an unbelievable blessing. I'm look for advice on how to get through the treatment. I told my doctor that I need to get back to normal life ASAP. I'm very active and went back to as normal as I could even after both surgeries and I believe that was key to my very quick recovery. I'm very nervous and scared. Thankfully I am on summer vacation until Aug 10th so I will have my 4 weeks of infusion and 3 weeks of shots in before I go back to school. Any and all advice is appreciated!! I need some positive vibes going into this. My dr told me attitude is everything so as long as I keep a positive attitude, I'll so fine. Thank you!

Christy :)

Login or register to post replies.

Replies by: Bubbles, landlover, Anonymous

Hi All:

I wanted to share this book in pdf. It has great info for new patients. I began my journey only 4 months ago - printing and making notes in this book has helped me immensely. 

Here it is:

Praying for everyone perusing this website!

Neil D

Login or register to post replies.

Shane740's picture
Replies 1
Last reply 6/9/2016 - 2:41pm
Replies by: Anonymous

Hi everyone had a level1 situ remove today and 3 more moles off tomorrow what are my chances that the 3 moles are Mel as well worried abit thanks


Login or register to post replies.