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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Anonymous's picture
Replies 5
Last reply 4/15/2016 - 1:23pm
Replies by: WithinMySkin, MoiraM, Anonymous

I was diagnosed with 7.0 mm melanoma. It arose from what I figure to be leftovers from a previous melanoma. I guess it would be considering nodular melanoma since my dermatologist described the lump making up the melanoma as a nodule. The nodule is on my ankle so thankfully that puts it further away from a lot of vital organs. 

Anyway I want to get a good idea of whether or not it has spread to a lymph node or other organ. I'd appreciate getting opinions. (I understand it's no replacement for actual tests but I have to wait for that and want to gather input in the meantime)

I've been having an issue with my reproductive health for months now. Vaginal burning and discharge that won't go away despite taking antibiotics, painful varicose veins and blue-ish marks in general that feel like bruises and are fairly painful (I'm not pregnant), I also have 3 dark freckles on my labia that have developed within the past month that I noticed at around the same time the blue-ish marks and painful varicose veins there appeared. 

I'm sorry. I know this isn't a gynecology forum and I feel stupid for asking since from what I'm mostly reading it seems that melanoma tends spread to the lymph nodes and other internal organs so assuming that theres some new secondary site presenting itself on the surface of the body doesn't site right with me. I'm mostly asking because I am having a hard time finding alternative explanations for my reproductive health issues and I have also been diagnosed with HPV. I know the exact type of HPV I have but have no other information on it so I can't tell if it is the type that puts me at higher risk for vulvar melanomas or not. 

I feel very uncomfortable bringing this up with a doctor in person for various reasons which is why I'm posting this anonymously. 


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Toby0987's picture
Replies 1
Last reply 4/15/2016 - 2:47am
Replies by: MoiraM

Just got back from Mayo. I'm previous stage 3b Mel as well as pap thyroid cancer. They killed off the thyroid cancer with ablation earlier and I'm still clear. Had my PET and it showed up that I had appendicitis but I don't feel sick so false positive? They called me at 8pm after PET and quizzed me on any physical symptoms and to go to er if have any pain. Today went in and they said not sure what is going on but if I don't have symptoms that the best course of action is to do nothing. Have any of you had a situation similar with the PET? It also showed a bigger node and sugar pickup in the node. My original Mel was on arm and in armpit. My fat/hot node is near my appendix . I have to go back in 2 months for a follow up PET to see if the node has gotten bigger

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DZnDef's picture
Replies 4
Last reply 4/16/2016 - 8:29pm

My brother has continued to deteriorate and is in the hospital now waiting for a transfer to a skilled nursing facility.  He has a healthy appetite and continues to have bowel movements but nutrition does not appear to be reaching his muscles.  They have attempted to rule out other causes of his multiple myeloma (I think that's the right term).  He is down to 4mg every other day of his steroid.  Brain MRI shows all of his brain mets have shrunk by half (he had SRS and was on Zelboraf for one month, off for one week for side effects (lung pain), due to re-start soon).  His chest scans show his lung mets have either disappeared or shrunk by half.  Yet during this time he has continued to weaken and appears to weigh even less.  He cannot get out of bed without assistance and cannot sit up for more than a few minutes at a time without needing to lean on something.  The Zelboraf appears to be working, yet his strength is not returning.  This is very confusing.  Is there a point where cachexia cannot be reversed even if the cancer drugs are working?  Where is all that nutrition going if not to his muscles?  I would guess the cancer except the cancer is shrinking.  We don't know for sure this is cachexia but what else could it be?  Any ideas?  Suggestions?

Thank you all for your support.


Maggie - Stage IV (lung mets unknown primary) since July 2012

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KimberlyVU's picture
Replies 4
Last reply 4/14/2016 - 9:03pm
Replies by: Janner, KimberlyVU

I have a suspected amelanotic nodular melanoma and just had my first appointment with the dermatologist yesterday. 

A brief history - I had an elevated bump appear on my upper arm where I believe, but cannot be certain, there was a flat or slightly raised brown mole before. I found the elevated mole mid February but did not report to my primary Doctor until April 7. I have many moles (probably at least 200) and have had several looked at over the years. In general I've always left feeling silly for even bringing them up. This time not so silly. She immediately referred me to a dermatologist and I saw him yesterday so under a week wait. 
He has scheduled me for a punch biopsy 8mm for next Wednesday the 20th but stressed that there is nothing to worry about. Possibly pyogenic granuloma. 
My lump shows granulation and is very vascular, originally was scaly and a little scabbed over only a few dots of blood at first but now it's just pink/red with a little brown left on the side. I can't figure out how to post a pic from my phone. 
Knowing my warning signs do you think I can comfortably wait for the week to get the biopsy and then the two weeks (probably) for the pathology? 
Any advice is welcome
Kim V

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jahendry12's picture
Replies 4
Last reply 4/15/2016 - 8:04am

Has anyone else experienced sores in their mouth & throat from keytruda?  If so, any ideas on how to get some relief?



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Anonymous's picture
Replies 6
Last reply 4/15/2016 - 12:49pm
Replies by: jenny22, deardad, Anonymous, Janner

My husband was recently diagnosed with SSM 1a. We had another pathologist to read his path (second opinion).

First report: Breslow 0.6 Clark IV no regression 0 mitosis no ulceration

Second report: Breslow 0.84 Clark IV partial regression present 0 mitosis no ulceration

He had wide excision, but did not have SLNB!!

I am panicking! That is all I can think all day and all night... I can't focus on anything else...

What should we do?

Can he have SLNB now? Will it be accurate?

Any experts on this?

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Hello.. Heard it mentoned that if Keytruda was used via its FDA approval for initial treatment would eliminate getting into most clicial trials? I need to look threw trial data but was wonderinf if anyone else had heard that?

Hoping that Keytruda woud be all needed but also dont want to prevent getting into a trial if necessary.


Thanks so much!


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WithinMySkin's picture
Replies 7
Last reply 4/15/2016 - 12:23pm
Replies by: WithinMySkin, Anonymous, Janner, jodaro, jennunicorn

Hello All! Happy Thursday!

I just read this article about melanoma criteria. I know lots of us here have found our primaries, so hopefully this will be helpful to everyone. The article mentions that ABCD criteria, while the most specific, is not the most sensitive. The study mentioned the Menzies' Method as the most sensitive, which I hadn't heard about. 

Here's the link for the study:

And a link describing the Menzies' Method. It has lots of great pictures, so definitely worth a look!





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Bradley75's picture
Replies 1
Last reply 4/14/2016 - 2:39pm
Replies by: jenny22

I just finished my 7th round of shots.  I am using Leukine because I didn't qualify for any stage 3 clinical trials at the time of my diagnosis.  The Leukine was my best option to try to prevent recurrence.  My question involves side effects.  I have had similar side effects on all rounds with injection site reaction and a little fatigue.  This round is the first time I have been dealing with a headache.  I have had it for over a week now and am starting to wonder if it might be something other than a side effect.  Any Leukine users out there with a similar experience?  I asked my melanoma care team and they said it is most likely a side effect, but why would it occur on round 7 and not on any other round?

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Tamlin's picture
Replies 4
Last reply 4/16/2016 - 10:14pm
Replies by: Tamlin, Janner, Anonymous


can anyone on here tell me what stage my melanoma is? I asked my consultant but he swept over it and changed the subject. 

I had my toe amputated due to an ulcerated melanoma 4mm thick, 10 years ago. 

I now have a rather large swollen lymph node in my right groin which has proven to be melanoma. I will be having all my numbers des in right groin next week, but I would just like to know staging etc. Not knowing is worse, I think xxx 



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jennunicorn's picture
Replies 2
Last reply 4/14/2016 - 12:01pm
Replies by: jennunicorn, Tamlin

This has been an eventful day in the SF Bay Area for immunotherapy news... so I had to share this too

I honestly feel incredibly grateful every day that I live so close to such a great research hospital, UCSF has been so wonderful (after some not so  great experiences elsewhere).

And now to read they have a whole immunotherapy program and clinic that will help more than just melanoma patients live their lives after their diagnosis. So awesome! Highly recommend anyone on the West Coast to check out UCSF if they need a good place for clinical trials, treatment, or just second opinions.

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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JohnA's picture
Replies 11
Last reply 4/16/2016 - 9:24am

My wife (diagnosed anal mucosal melanoma november 2014, WLE, local radiation, adjuvant chemo cisplatin +Temodar), just newly diagnosed with Mets in lungs, liver,  rib and brain (3 small lesions). C-Kit+ BRAF-

We've consulted with two oncologists now and both have recommended the ipi-nivo combo.

A few questions, if some of you could chime in it would be very helpful:

1) does brain involvement change response rate for these immunotherapy drugs?

2) we are very concerned about side effects, chemo and radiation left her with colitis, which has just recently cleared up. This is also a major side efect in the combo as we understand it, with some people even having a spontaneously ruptured colon.

--does it make sense to consider pembro or nivo alone before the combo, to reduce the likelihood of side effects?

--or is this too potentially dangerous, so we must go at it with everything available (the combo) and risk the side effects?

Our oncologist says they are unpredictable so it seems hard to go with the 'wait and see what side effects occur' plan.

3) she may have the option of particpating in a trial in which she is assigned to the group which has the combo treatment being recommended anyway.  Any reasons NOT to do this?

Thanks so much for your help everyone.

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Edwilcox's picture
Replies 5
Last reply 4/14/2016 - 10:48am
Replies by: Jewel, swissie, Anonymous, Bubbles, Janner

I was diagnosed with stage IIIA melanoma last September. I go in for CAT scans every 3 months and so far everything is no-evidence-of-disease. Before the melanome hit me, I had a bad knee, it's only gotten worse. Will having it replaced change the odds of melanoma recurrance?

Thank you

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Anonymous's picture
Replies 8
Last reply 4/22/2016 - 4:17pm
Replies by: lakegirl67, Janner

It all started by visiting my Derm for the first time in 6 years for a full body check up. I'm 49 with a a lot of sun damge and regrettably used tanning beds as a teen. He didn't like the look of a "freckle" on my neck. He did a shave biopsy and here is the report:

Gross desription: a shaved portion of skin is received, inked for margins and submitted complete in one cassette with transverse sections taken. .9x.9x.1cm

Microscopic exam: there is a proliferation of atypical melanocytes within the basal layer. Some of these cells are seen migrating upward through the epithelium. These are changes seen in melanoma-in-situ arising within a dysplastic nevus. The lesion is completely excised.

Note: although excised, reexcision is recommended.

Diagnosis: Atypical melanocytic hyperplasia (melanoma in situ) arising within a dysplastic nevus, completely excised. (SEE NOTE)

My Dr. was on vacation so another Dr in the practice gave me the news and assured me that this was "NOT a   melanoma" and that "This added diagnosis was added by the pathologist to ensure that it would be treated as a melanoma in situ but your mole does not have all the criteria needed to make the diagnosis of melanoma.I realize that sounds odd,  keep in mind the pathologists intent is to ensure adequate treatment."

So an appt was set up for yesterday with my Dr. to have the WLE. When I met with him, he told me that it was melanoma in situ and that the pathologist was using "old terminolgy". What the heck?? I went through with the procedure because the treatment is is the same for either AMH & MIS. I think he did 8mm margins and I have a 4 inch incision on my front neck area!

He reassured me that this would take care of it, but I am not so sure I feel reassured about anything right now. I'm scared that these results will show something more sinister. I fear that there will be a reoccurance and I have a lot of questions. Can anyone offer advice. Why the difference in interpreting the path report? I called the path lab today but they won't let me talk to a path. I want to know because it matters to ME if this a Melanoma diagnosis or not!! Am I missing anything? Does this seem like a good path report in terms of info provided? Thanks!

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jennunicorn's picture
Replies 3
Last reply 4/13/2016 - 9:47pm

Just saw this and got pretty excited since this awesome news is happening in my own backyard. I love when super wealthy people put their money in the right places! :)


Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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