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.

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So,  my husband has had multiple primaries and I don't know a part of his body that hasn't been cut on to remove basal cell, recurrent basal cell, or squamous cancers.  The last derm check (4 months ago) was the first time in years that he didn't need any biopsies.  I had hoped we were out of the woods.  

Now, though, he's developed something I've never seen before.  It's about the size of a BB, color between a clear and pearly white, and hard.  It looks to be along an old incision scar, but honestly I couldn't tell you if he had something removed right there or not.  That popped up probably six weeks ago.  Now, it looks like there is an additional lump under the skin right beside it.  I've also notice some other spots on his face that look like nodules under the skin, abou the size of bb's.  I can't say too much to him about any of this because I found the primaries, not the doctor, so whenever I act concerned he gets really nervous.  

Please tell me that these don't sound like sub-q's, or nodular melanomas.  He does have another derm appointment at the end of June (he cancelled his last one because we were going on a vacation and he said "I just don't want to think about it").

Strength and Courage,


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Anonymous's picture
Replies 0

I was recently diagnosed with melanoma.  They did a 1cm and think I am going to be fine.  It was found during my routine check.  After something like that you start to pay attention to everything.  I have a small mole like mark (slightly raised) that has been there for a few years.  Hasn't changed in color or shape or size (purplish). The dermatologist has seen it several times and told me I could keep it.  Don't want to be paranoid...want to take his advice.  Have to assume he knows what he is looking at.  Plus all that I are looking for change.  True?

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BrianP's picture
Replies 1
Last reply 5/26/2015 - 9:08pm
Replies by: Mat

This seems really interesting.  Maybe this could be one of the first discoveries that enables more patients to respond to Anti-PD1

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BrianP's picture
Replies 1
Last reply 5/26/2015 - 9:15pm
Replies by: Mat

Dr. Jeffrey Kirshner’s 2015 ASCO Abstract Recommendations—Melanoma

Written by

Sunday May 31, 2015; 1:00 PM–4:00 PM

Plenary Session

LBA1 Efficacy and safety results from a phase III trial of nivolumab (NIVO) alone or combined with ipilimumab (IPI) versus IPI alone in treatment-naive patients (pts) with advanced melanoma (MEL) (CheckMate 067). Authors: JD Wolchok, V Chiarion-Sileni, R Gonzalez, et al

Take-Home Message

  • The paradigm for treating advanced melanoma has changed for the better in recent years. This plenary presentation should add some clarity in terms of initial treatment for metastatic melanoma.

Saturday May 30, 2015; 1:15 PM–4:15 PM

Oral Abstract Session

9001 Long term follow up of survival in a randomized trial of wide or narrow excision margins in high risk primary melanoma. Authors: AJ Hayes, L Maynard, RA'Hern, et al

Take-Home Message

  • A total of 900 patients with primary cutaneous melanoma ≥2 mm in Breslow thickness were randomized to a 1-cm excision (n = 453) or 3-cm (n = 447) excision. After a median of 8.8 years' follow-up, 494 patients died; 359 of the deaths were melanoma-related. The rate of melanoma-related death was 24% higher in those who received a 1-cm excision vs those who received a 3-cm excision.
  • This randomized trial of patients with melanomas ≥2 mm in depth has demonstrated an improvement in melanoma-specific mortality in addition to locoregional relapse with 3-cm excisions compared with 1-cm excisions and may very well lead to the recommendation of even wider margins for such patients.

LBA9002 Survival of SLNB-positive melanoma patients with and without complete lymph node dissection: A multicenter, randomized DECOG trial. Authors: U Leiter, R Stadler, C Mauch, et al

Take-Home Message

  • I am looking forward to this presentation. Results could lead to a change in the standard of care and possibly improved quality of life for these patients.

9003. Surveillance imaging with FDG-PET in the follow-up of melanoma patients at high risk of relapse. Authors: JH Lewin, A Sanelli, I Walpole, et al

Take-Home Message

  • In this study, 86 Australian patients with stage III melanoma were followed with serial FDG-PET scans, and 25 recurrences were found. The majority of the patients were asymptomatic, and 9 were able to undergo potentially curative surgery.
  • Although not yet a part of guidelines, this imaging modality should be considered in selected patients and may someday be a standard of care.

9004 Clinical response, progression-free survival (PFS), and safety in patients (pts) with advanced melanoma (MEL) receiving nivolumab (NIVO) combined with ipilimumab (IPI) vs IPI monotherapy in CheckMate 069 study. Authors: FS Hodi, MA Postow, JA Chesney, et al

Take-Home Message

  • In the CheckMate 069 trial, 142 patients with metastatic or unresectable melanoma were randomized 2:1 to receive ipilimumab plus nivolumab or ipilimumab monotherapy. Both objective response rate (60% vs 11%; P < .0001) and progression-free survival (8.9 months vs 4.7 months; P = .0012) significantly improved with the addition of nivolumab compared with ipilimumab monotherapy. While the safety profile was manageable, 51% of patients receiving ipilimumab plus nivolumab reported grade 3/4 drug-related adverse events compared with 20% of those receiving ipilimumab alone.
  • This is another important presentation in the saga of PD-1 inhibition, which may potentially change the standard of initial care for advanced melanoma. The combination led to a higher response rate and improvement in progression-free survival.

9005 Long-term efficacy of pembrolizumab (pembro; MK-3475) in a pooled analysis of 655 patients (pts) with advanced melanoma (MEL) enrolled in KEYNOTE-001. Authors: A Daud, A Ribas, C Robert, et al

Take-Home Message

  • In 342 ipilimumab-treated (IPI-T) and 313 ipilimumab-naïve (IPI-N) patients with metastatic melanoma, after receiving PD-1 inhibitor pembrolizumab, ORR was 34% (29% of IPI-T patients and 38% of IPI-N patients); CR rate was 6%. The 6-month progression-free survival (PFS) rate was 44% (41% in IPI-T patients and 47% in IPI-N patients), and the 12-month PFS rate was 34% (32% in IPI-T patients and 36% in IPI-N patients). Overall survival at 1 year was 67% (63% in IPI-T patients and 71% in IPI-N patients), and at 2 years was 50% (46% in IPI-T patients and 53% in IPI-N patients). Grade 3/4 treatment-related adverse events were reported in 14% of patients.
  • This PD-1 inhibitor was demonstrated to have robust and durable activity in patients with previous ipilimumab exposure and in previously untreated patients, with manageable toxicity.


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tmelanio's picture
Replies 5
Last reply 5/26/2015 - 8:21pm
Replies by: arthurjedi007, mrsaxde, tmelanio, Anonymous

In great health at 67 and retired in the rural community of Nalcrest, Polk County, Florida, I chose the cheapest advantage plan I could find, saving over $300 a month over my previous plan which I suspended.  I can always go back or choose a better palan during open season.

Because my plan does not authorize routine skin check-ups, my PCP picked a random blemish to be checked out by a participating dermatologist.  On February 11, 2015, his nurse found a suspicious spot elsewhere on my right forearm.  I got a call right away that it was melanoma.  Oblivious, I thought nothing of it.

On March 2, I was shocked at how much the dermatologist cut away for such a small speck, but soon afterward I got a call that the margins were too small and that I had stage 2 melanoma.

The earliest available appointment was April 21 for one of only two oncology surgeons at the Lakeland Regional Cancer Center which is approved by the Commission on Cancer.  He said he would perform a wide excision and remove 2 lymph nodes.  The earliest he could do it was May 7.

My plan requires all testing to be routed through my PCP, a round-about way apparently foreign to everybody.  I personally had to play phone tag between the Cancer Center, my PCP, and health plan to clear up repeated miscommunications and misunderstandings before my pre-op testing was approved. Labcorp and ATR waiting rooms were full and obviously low income. 

Right up to the afternoon before my scheduled May 7 surgery, I was assured that I would get an automated call informing me of what time to show up.  Just after 5 PM I received the automated call informing me to check in 2 hours before my 2:05 PM surgery.

May 7, 10:30 AM, I received a call asking why I wasn't there for a 10:00 AM procedure for which a medical team was waiting.  When I told her about the automated call she apologized - a nurse was supposed to have called me.

My girlfriend, Julie, was told that she could accompany me every step of the way.  However, she was left in a room to which I was to return.  She was forgotten for over an hour and a half until a nurse came by and asked what she was doing in there.  She was told the surgery would last 2 hours so she went to the hospital cafeteria to eat.  The surgery was over in 40 minutes and she missed speaking personally with the surgeon.

Immediately before the surgery, a kid came by with some papers to sign.  I was hooked up on the gurney wearing nothing but the gown and of course I didn't have my glasses. On retrospect I believe it was giving him permission to insert the breathing tube for the anaesthesia.  Afterward I had a miserably raw throat and was coughing up gobs of green phlgm for 3 weeks. It hurt to swallow. I read online that this is preventable and is dependent upon the skill and technique of the anaesthetist.

The follow-up was on May 18 with a nurse practitioner in lieu of the vacationing surgeon.  She balked twice before answering my question.  Julie burst into tears when she said one of my lymph nodes tested positive.  I asked what next and she replied, "Chemo". I asked how much cancer was in the positive lymph node and after looking at her clipboard, replied, "I don't know". She reiterated the surgeon's assertion that he would take out all my lymph nodes should one test positive.  She prescribed a PET scan and brain MRI.  She scheduled my next appointment with her since the surgeon was fully booked for the month.  June 2 was chosen because he would be in a nearby wing and she might be able to get him to drop by.

Again I played phone tag trying to get approval for the PET scan.  May 21, on my way to the mobile unit, I received a call informing me that it would have to be rescheduled because it had not been approved yet. From my car I made a couple of calls clearing some blatant miscommunications before she called back with an Okay.

Yahoo! The PET scan is negative.  I would have not known until long after Memorial Day had I not called and insisted. However, I learned some perhaps dated info that PET scans have trouble detecting cancer that is less than 8 cm, which seems awfully big to me. How accurate are they? states that the survival rate is the same for patients who elect not to have lymph nodes removed, and that because of this, many patients choose to leave them alone to avoid probable complications for life. Immunotherapy does not increase lifespan, and even with chemo and lymph node removal, recurrence is 27%.  Are there any stats for watch and wait?

Brain MRI scans are not available in Lakeland until the middle of June, so I am having one in Plant City May 28.  If that is negative also, am I considered NED?

I have gone cold turkey and removed sugar and processed foods from my diet.  Eating as much as I want, I now consume foods which strengthen the immune system and I am losing weight.

I feel like my June 2 appointment with the nurse is doc-in- the-box assembly line care.  I know I need a melanoma specialist. I am long registered to receive care from any Veteran's Hospital in the country. Open season to change plans is at year's end.

Any insight or advice would be sweet. Thank you.




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Husband had 4 year scan since his recurrence in 2011 and is NED.  He was diagnosed as stage 3(b) or 3(c) depending on the institution.  Although it is always in the back of our mind, it doesn't define us.  We live more appreciatively, laugh louder, empathize deeper, and play harder (we still work too).  Feeling optimistic with the recent medical advances in the melanoma field and wishing you all the best in your journey.

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I don't recall when I subscribed to this weekly email digest, but this week's installment had a couple of interesting articles.

Disclaimer (or as everybody loves to use at work these days: tl;dr): I didn't search Celeste's blog first, so she may already have written about these.

Talks about the discovery of a pathway (WNT/beta-catenin) that inhibits T cells from entering a tumor. The article hypothesizes that patients lacking TIL cells do not benefit from immunotherapy as much as those with them. This opens the door for investigating how to block the WNT/beta-catenin pathway to let the TIL cells in.

The second,, talks about melanoma's need for glutamine to survive. They found that melanoma cells die without it.

- Paul.

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las630's picture
Replies 4
Last reply 5/26/2015 - 7:58pm
Replies by: las630, Bubbles, Toby0987

Good morning,

I had a mole removed from my leg about a week and 1/2 ago.  The dermatologist called me last week and said that it came back as malignant melanoma and that I needed to see a surgical oncologist.  I saw the surgical oncologist on Thursday and they said I need to have a wide excision and a SLN biopsy.  However, my surgery date is not until June 19th.  The waiting is kind of making me crazy!  :(


My path reports from the shave biopsy showed malignant melanoma, 1.2mm breslow thickness, positive ulceration, 2-3 mitoses per mm2.  Can anyone tell me the statistics of someone who ended up having lymph node involvement with this type of path report??


Thank you,


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tcadwallader's picture
Replies 4
Last reply 5/26/2015 - 3:58pm
Replies by: malika, Anonymous, tcadwallader, _Paul_

I am new to this community but I am frantically searching for answers, reassurance, etc.  My 9 year old son has multiple moles on his back and neck.  They have all been checked by our pediatrican within the last year and have "looked good".  Within the last 9 months I have noticed a pink, raised mole that has rigid boarders and seems to be growing quickly on his back.  I took him to the dermatologist and they referred to it as an "ugly duckling" and recommended doing a shave biopsy right away.  I am worried sick and wondered if anyone else has had a similar experience?!?!?

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5dives's picture
Replies 2
Last reply 5/26/2015 - 11:36am
Replies by: Janner, _Paul_

Hello all, 

I was diagnosed stage 3B in June of 2014 and so far have been NED ever since. At my last appt with the derm, she mentioned a mole she wanted to keep an eye on. After that visit, I found an app I've been using to keep track of some moles. It asks you to take a picture of your mole with a reference item (dime or penny) to help measure the mole. I know some of you have been looking for apps to keep track of moles, so I thought I would recommend it here. It's called Mole Mapper and its available for IOS and Android. 

So...I have two moles that appear to be changing. I'm seeing the derm on Wednesday to have them removed, but as many of you have experienced, my anxiety and imagination are out of control. I know what I'll have to go through if they are new primaries, and I'm not exactly eager to relive that experience. If anyone wants to try to talk me off a ledge, I'm definitely open to that. :-) 

My question: Have any of you had an evolving / growing mole that turned out to be nothing?

I'm including the photos from the app just as evidence of how the app works.




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CourtneyT's picture
Replies 15
Last reply 5/26/2015 - 2:03am

Hi there,

I am female, 37 years old, single with no children. I mention this because I don't really have a network of people who understand this disease or a support group close to me. 

On March 9, 2015, after a lymph node was removed in my left groin area (due to pain and swelling), I was told the dissection showed an aggressive form of Melanoma in two lymph nodes. I took a leave of absence from work in NC and relocated to Baltimore. All my specialists and providers are at Hopkins now. I have had all the lymph nodes removed in my groin, as well as all the usual tests: PET, CT, EUS, EGD and multiple biopsies. 

The next step is really where all my questions stem from and I cannot seem to find the answers. I begin Interferon in a week and keep forgetting (really get tongue tied) to ask my physicians, despite even writing down questions. My interferon protocol is for 12 months, 1x a week injections I can do at home; however I have been reading that the first month is done at the hospital (inpatient?, IV?)?  Can anyone walk me through the process step-by-step or at least the first month. It would be especially great if someone has done it at Hopkins. 

I am categorized as Stage IIIC 

Lastly, perhaps I should start a different thread for this but can someone help me with how they dealt with the side effects of the treatment?  I'm already in a lot of pain in my stomach, stressed out and have horrible headaches.

On a side note, I have switched my diet to all organic primarily vegetables and fruits (75/25) and am very careful about what I eat.  Prior to this, I was very athletic and healthy, running marathons and could still flip around being that I was a gymnast and still coached on the side.

Thank you so much in advance!  God bless all of you and my prayers will be with everyone and be hoping for the best in their journey.





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_Paul_'s picture
Replies 5
Last reply 5/25/2015 - 4:48pm

I remember quite distinctly sitting in my new oncologist's office last year on Wednesday, September 10. I had had a second recurrence, and I was sitting in his office to discuss the results from a PET of two days earlier. My prior melanoma oncologist had accepted a position at Stanford, and I think this was the initial meeting with new one.

I had had quite a few scans up to this point, but this time it was different. All the prior ones had shown NED. But this time I had mets in lungs, liver and gall bladder. I remember asking him what my prognosis was, and he said the conventional outlook was less than a year. So in my mind I assigned a drop-dead date a year out (apologies for the bad pun). I would be lucky if I made it all the way to midnight on September 9, 2015.

The big problem of course is the uncertainty. What did less than a year mean? A couple of months? Six?

In the past, I would just take time off work to meet with my oncologist when there were scan results to listen to, then go back and finish off the day at work. That had been my plan on this day too. But after hearing the results, I called my boss, and told him I would not be coming back. Maybe ever.

My next thought was I better enjoy my life while I still feel good so I booked a trip to Hawaii and in the meantime took off on a road trip throughout the south west.

After a few weeks I still felt pretty good. I had some side effects from treatment (ipi) but nothing from the cancer. So then I sheepishly returned to work, thinking I had overreacted. But everybody there welcomed me back and the embarrassment quickly faded.

I recently started going to a cancer support group because I wanted to see how other people deal with this strange state of existence. That’s when I heard someone jokingly use the term “expiration date”. That person had outlived hers and I am beginning to think I will too.

What I found was that over a period of just a few months, my fear of the unknown (unknown being how much time is left) has gradually been replaced with this strange outlook. It still seems quite likely that any chance of living to a ripe old age has been greatly reduced, but if I make it to my expiration day, that seems like a reason to celebrate!

I don’t think I am the only one that feels this way. I suspect there are a lot of us that go through a similar process. The end result is that for now anyway, my day to day life from the outside looks unchanged. But I have been left with this heightened awareness that I better appreciate each day of what is ultimately an uncertain future for anyone alive.

I hope someone can relate to this.


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Mhardes's picture
Replies 2
Last reply 5/23/2015 - 1:46pm
Replies by: Mhardes, Janner

Sorry..still new to the site .. not sure if I should reply to the old topic or create a new one . I went to the dermatologist yesterday and had the melanoma superficial spreading removed. I t was a 1cm...before he did it..said that It was th lowest stage above zero.basically as low to ? Situ as it could be. He also said there was no need to see an oncologist and that with the stage its in no one would fault him for not even recommending it..but he knows I have been reading up on it and said if it makes me feel better he will refer me..he said no need one has ever discussed anything past the 1cm as treatment..they did have to do the skin graph so that was fun having two people on each the end he said all looked great..good thing we got it as it could have been easily mistaken for a bug bite or something else..didnt look like a melanoma..going back in two weeks to take stitches out and j asked him to check me over then we will meet every 3 months for the first two years. I really want to take a breather and stop worrying ..I feel blessed that it elegant the stage it I missing anything or should I be worrying about anything else.?Just want to finalize this bump in the road and move on...looking on my body..see all these other marks...just hoping all done now

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Banders's picture
Replies 1
Last reply 5/24/2015 - 5:13pm
Replies by: Anonymous



I'm stage 4 metastatic melanoma and yesterday (Friday morning, May 22) I had an oupatient excision in my upper right eyelid.


Feeling pretty good a day later (Saturday morning the 23rd) with no pain, but I can't open the eye.  The sheet I was given from the hospital didn't mention this topic and a pretty good google search also reveals no inforation about this topic specifically related to melanoma excisions.  


So to the point:  Anyone had an eyelid excision?  After how long were you able to open the eye?  I don't know if I should be trying to open it or the opposite.  


Thanks ahead of time for any info.


Brett Anderson 

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