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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Janet Lee's picture
Replies 5
Last reply 10/10/2013 - 12:03pm
Replies by: ecc26, Janet Lee, Anonymous

The last time I posted here, we had been informed by our oncologist that Don was having a positive response to Ipi. YAY! We had also just hosted a magical, romantic wedding for our daughter, Georgi, and had quite a celebration! And our oldest daughter, Tori, is expecting our first grandchild (a girl) at the end of this year. 

The euphoria didn't last too long, as Don has swelling and lot of pain in his groin area. PCP said he didn't think it was a hernia. Oncologist said he didn't think it was the cancer. Oncology surgeon said he's 50/50 as to whether it's hernia or cancer. We do know that Don has mets in this area.

He started taking 300 mg of extended-release Tramadol, an anti-inflammatory/NSAID. I'm wondering if anyone else has had similar experience and whether NSAID has been helpful. So far, after 4 -5 days on the Tramadol, there is very little improvement. I know there are a lot of different anti-inflammatories out there. Maybe he needs more than one pill a day? I plan on asking the doctor these questions, but thought I'd see what the "real experts" have experienced.

Thanks to you all, as always, for the help and support.


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john partrick michael murphy's picture
Replies 5
Last reply 10/10/2013 - 9:10am
Replies by: Mat, GAngel, Momrn5, BrianP

I am coming up on three years on the BRAF/MEK combo of GSKs remarkable combo and my Stage IV melanoma remains dormant. However, I have had three knife fights with wild type melanoma sprouting on my face and chest. Had they been the BRAF positive type I think it would have washed me out of this trial I have come to love. Now I insist on "when in doubt, cut it out." One spot only had two of the five indicators, and I insisted it come out. She gave in, and it was already stage II, but they got it out with big margins. This bastard is relentless and we must remain vigilant as it seems to be always on the prowl.

This sucker doesn't like scalpels and stitches but I do. I want every gram of it out of me, and I am still waiting for my first lab report of benign or says when things look fine. There is a whole lot of me, and they only take bits and pieces so I figure this could go on for decades, and that would be just fine.

One cohort is turning albino! Our drugs are not just killing her melanoma, but stopping her whole melanin system. How can you have melanoma, if it has no melanin to mutate? She actually could be cured. We all love her. She has never had an adverse affect, complains about driving 20 miles, and parking at MGH to folks like me who come from Colorado each month. She now has three years I believe and she charms us with her unrealistic expectations and yet she gets the best results. Now she says she misses her liver marks as she looks younger and younger. I think I am also, as they had to use a carpet knee-kicker to stretch my forehead over the silver dollar sized hole they excised last week, and my wrinkles disappeared.
The local dermatologist just removed the stitches, and I had him take out another small spot just for both of us to stay in practice.

The history of the world is the battle between superstition and intelligence.

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Tina D's picture
Replies 6
Last reply 10/9/2013 - 10:02am
Replies by: Tina D, aldakota22, BrianP

Hi guys,

I had my fouth dose of Mercks anti Pd1 on Monday. Feeling pretty well overall. I will have scans with my next infusion appt in 3 weeks. Will update then!


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d0771's picture
Replies 4
Last reply 10/8/2013 - 11:11am
Replies by: d0771, Janner, POW, Anonymous

For a quick rundown of my history


Visited derm for something I thought could be melanoma, but was actually a benign keratosis.  While I was there, they did biopsy two moles.  One came back a mild atypia, other came back benign.


9/2013, during a routine exam, a biopsy was performed, and it came back melanoma in situ, that was then wide excised, and came back with clean margins, at the same time, another  mole on my leg was biopsied and came back mildly displastic.

late 9/2013 - Went in for my full body exam, one mole biopsied, was notified it was mildly atypical, and they want to punch biopsy it.

So I am looking for a little bit of knowledge / advice on this.  I just spoke to the nurse, and basically asked why if one on my side that was mildly atypical has not been punch biopsied, why would the one on my back need to be?  Just to be clear, I was not asking this from the perspective of being a difficult patient and going against doctors orders, just the opposite.  My concern is that we are simply monitoring the atypia on my side, but in reality, should that one be punched as well now that it turns out I had melanoma?  From everything I understand, I am just looking to make sure that no pigment is coming back to the one on my side, which I check regularly.  So, other than the location on my back being much harder to closely monitor than my side (out of sight out of mind), is there any other reason to punch biopsy it?

Basically, if you have an atypical, are you trying to achieve the same results as with the melanoma and the wide excision?  Is the next step a wide excision of my mildly atypical mole? 

Just trying to get a little firmer grasp on what I am dealing with.  From what I understand yes, atypicals can turn into melanoma, but usually melanoma basically starts out as melanoma in a new spot.  Of course, I know my chances are increased now that I have been previously diagnosed, but just looking for some clarity.

Thank you for reading my long thread and any thoughts you can share.

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DeniseK's picture
Replies 19
Last reply 10/8/2013 - 10:19am
Replies by: Janner, Anonymous, POW, smurph226, DeniseK, JoshF

Hey Everyone, 

I need help for my cousin.  She is not a blood cousin but she was just diagnosed with Melanoma today.  She had a biopsy of a mole behind her knee on the back side of her leg removed and it came back as melanoma.  I guess it was a  punch biopsy but she said it wasn't very deep and the derm said they caught it early.  She is asking me what questions to ask and I don't know.  It's been so long for me since my initial diagnosis I wouldn't know how to read a path report or know what to ask anymore.  I do know she will have to have a WLE but do they do a SNLB too automatically?  I told her to ask her derm to refer her to a melanoma specialist not just an oncologist.  The derm is talking to the melanoma surgeon and is getting back with her in the morning.  I am very concerned for her and she is scared to death.  She lost her daughter Amber at age 24 in 2001 to melanoma.  I told her about this website so maybe she will come for support and help with her questions.  I'm trying to find out what the depth was.  

Any help as far as what she should be doing is appreciated.  

Thanks everyone for your help


Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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MattF's picture
Replies 3
Last reply 10/7/2013 - 12:00pm
Replies by: MattF, kathycmc, Cindy VT

SO Pathology report came back...please let me know what you think as I have ne real experience with sizes etc ...

It reads a little confusing, but it looks like 

-2 Nodes out of 60 positive for Malignant Melanoma , largest is 2.0x2.0x1.1 cm tumor (I believe these are the two that made lumps on the side of my neck)

-also had parotid gland and parotid salivary gland both of which were neg for disease, (however one of the nodes was within the parotid glad)

-there is no apparent extranodal extension

-resection margins free of malignant melanoma


SO my basic questions are:

Stage IIIB?

and is a 2.0cm malignant melanoma tumor within a node big? 

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Hstevens0072's picture
Replies 8
Last reply 10/7/2013 - 11:37am
Replies by: Janet Lee, Hstevens0072, Tina D, Anonymous, NYKaren

First set of scan results received today - and it's working! Many small tumors are no longer showing up on the CT scan and the large tumor in my right lung is 60% smaller. All this after four infusions of Anti PD 1. I hope this boosts spirits and gives hope to others.
I am so grateful to God, and big pharma.

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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weesesd's picture
Replies 3
Last reply 10/7/2013 - 12:25am
Replies by: Janner, weesesd, Anonymous

Back in April my Dr noticed an odd looking mole on my back during an EKG in his office.  He referred me to a plastic surgeon who scheduled a biopsy.  The biopsy came back severely atypical and they said that on a scale from 1-10 with 10 being the worst it was a 9-10.  They did a removal of the entire mole and cut a 1.5" diameter circle out of my back to get all the margins.  Once sutured it was a 2" long wound.  It did not heal smoothly, becoming slightly infected and then then opening up.  They sutures were not dissolving, so they removed the remaining sutures and gave me a cream to help it heal.  At that point it was about the length and width of my wife's pinky.  After that it healed rapidly and when she last looked at it in the beginning of August it was just a superficial scab.


She noticed that it was looking odd on Friday morning.  It has a dark brown/black center down the entire length of the center of the scar.  The scar are surrounding that is a medium brown with a light brown scalloped edge on the skin around the scar.  The scar is also covered with a loose somewhat mobile skin that is shiny.  One small area is flaking and the scar itched when she touched it. 


I am scheduled to go back to the plastic surgeons office tomorrow afternoon.  Does this seem normal?  Has anyone else had something similar happen?  I am quite worried that this is now a melanoma.  Would it be better for me to see a dermatologist rather than a plastic surgeon?  Thanks for your support!

Scott - Loving Husband to Jen....Daddy to NINE wild uns'

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Germer's picture
Replies 3
Last reply 10/6/2013 - 10:59am
Replies by: Anonymous, Germer

I was rereading my path report from a year ago and I noticed that it stated focal ulceration instead of just ulcerated. What is the difference between focal ulceration and just saying ulceration? Is it a more specific term? Any insight would be appreciated.

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GAngel's picture
Replies 14
Last reply 10/6/2013 - 6:12am

Hello all! I am so happy to share the good news regarding the results of my husband's most recent PET/CT scan which revealed that the multiple (15+) hepatic lesions were not well seen and his left lymph node is significantly decreased in size! You may recall, two months ago, Rudy switched from Zelboraf (which was still working and had reduced tumors in liver from 15+ to 4) to the Dabrafenib/Mekinist combo in hopes of less side effects and an overall better result.  He has been feeling so much better since he started treatment with combo and now with confirmation that it is working we are certain that it was a good choice to switch treatment. Next step, when needed, will be a PD1 trial. His oncologist states these trials begin at the Chao Family Comprehensive Cancer Center, University of California - Irvine, in the spring of 2014. 

I continue to pray for all on this board for strength, peace of mind, and for the comfort of Christ.  Never forget that you are loved!


"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Replies by: LuckyMan51, Anonymous, book, paradise, jag, POW, Carole K

I finished up 4 Yervoy infusions in April 2012 following radio-static surgery to zap a brain met in March Saw steady shrinkage and was declared NED by Dr on 8/14. Next two brain and body scans were clear. Saw neurosurgeon yesterday for brain scan and consult. The fried tumor spot had a strange look. Looked like the dried up tumor grain was still there, not necessarily larger but had a dime sized circle of liquid around the spot. I had heard that people sometimes see shrinkage followed by some slight growth before seeing shrinkage again. Anybody have any thoughts or experience on this. Dr has me going back for a brain scan in 6 weeks rather than going in via traditional brain surgery now. Needless to say I am rather concerned. It seems odd that this change is 9 mos after completing the Yervoy treatment. Most of the posts I have read regarding Yervoy tumor growth were more immediate. No headaches or other problems have resulted thus far. Thank you in advance for any comments...

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JoshF's picture
Replies 9
Last reply 10/5/2013 - 9:09pm
Replies by: JerryfromFauq, JoshF, Linny, ecc26, Anonymous, POW

So my oncologist suggested aggressive treatment for lung nodule. Thought is that it got there through the blood. Only thing that lit up on PET. So I agreed to enter the trial and got randomized to ipi first. I start on Wednesday. 4 infusions over 12 weeks. A small break then followed by HD IL-2. Anyone participating or have any knowledge of the study? It's sponsored by Prometheus Labs. Kinda wondering what to expect. I see well respected melanoma specialists and they feel this is best course of treatment. Thisis  all a bit overwhelming.


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

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