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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Ninniditti's picture
Replies 3
Last reply 4/17/2016 - 5:21pm
Replies by: Ninniditti, Bubbles, MoiraM

Hi, I would like your opinion. Since diagnose seven years ago I have tried all available treatments, surgery, highintensive radiation + cisplatin, a lot of surgery after recurrence, nivo, yervoy, dacarbazine and keytruda. Nothing has helped but dacarbazine hold it stable. I can't have TIL or T-vec. Two months ago I had radiation just to reduce the pain, the tumour is in all my bones in my left face. I am now almost free from pain and am now supposed to have temodal, the same as dacarbazine but in tablets. All these seven years I have been very very tired and felt sick so I hate to begin with chemo. Am I stupid to just go on without any treatment at sll. Quality before quantity. I am 67 and could have a wonderful life if it wasn't for this tiredness and sickness. As I wrote I just wan't your opinion on this. 



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landlover's picture
Replies 4
Last reply 4/18/2016 - 1:20pm

Hi- I am newly diagnosed with melanoma in a cervical lymph node after having a small melanoma removed from my neck 4 months ago. Scans are done, lymph node sent off to Mayo clinic for Braf & other further testing as I understand it and I have an appointment at the Melanoma Clinic at the University of Michigan coming up.  

My question is about the path report on the WLE done in the original spot. First, I noticed that it was a shave biopsy.  There is nothing on it about Clark's level.  It does state breslow depth which I know is very thin, but hey! Here I am with a positive lymph node 4 months later.

the pathology report is as follows:

Subtype: superficial spreading malignant melanoma

Cell type: epithelial

Ulceration, regression, satellitosis, vascular extension,lymphatic extension, perineural etension : all not identified

Mitotic activity: 2/mm2

Host response: lymphocytes 3+, melanophages 1+, fibrosis is present

Margins: The tumor extends to the peripheral margins and focally to the deep margin

What concerns me is the part about margins. It sounds as if the "tumor" goes thru the whole depth of the specimen so how can a depth be determined? I guess this is really water under the bridge now, but I would appreciate any thought.






Stage 3C, primary on neck, neck dissection May 2016.

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Online Registration, for the Safe From The Sun Walk and 5K Run at Wilson Farm Park in Wayne, PA, closes in 1 week on April 21st! Register now!

Free screening too by dermatologists and lots of fun and friendship for patients and families and friends

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brittanygrace23's picture
Replies 5
Last reply 4/16/2016 - 10:04am
Replies by: brittanygrace23, Janner

Is it normal for them to remove a few lymph nodes at the same time as your excision as precaution? 


My doctor wants to do that, but is it necessary? 


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KimberlyVU's picture
Replies 3
Last reply 4/17/2016 - 3:45am
Replies by: Anonymous, Janner, jennunicorn

Hi Everyone,

I have a suspected amelanotic nodular melanoma and had an initial consult with a dermatologist that has now scheduled me for a 8mm punch biopsy.

Everything I read says that I should be having a wide excision.

I feel like he is taking the less invasive route because he doesn't see bumps that look like this.  I am scared of getting an incomplete diagnosis becaues I don't want to be rude or pushy with the doctor.

Should I push and demand a wide excision?  Should I see another doctor? Another doctor is going to take time to get a referrel and basically start from square one again. 

Please don't tell me you can't be sure or no one can tell me what to do etc. I already know that I just want to know in the opinion of other people who have had their melanoma diagnosis what would you do?

Kim V.

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Roni25's picture
Replies 14
Last reply 4/20/2016 - 5:09am
Replies by: Anonymous, Roni25, Polymath, MoiraM, UriahPH, mkirkland

Hi, I'm new here, I'm 35 and live in Scotland in the UK and I am so sick with worry. Over two years ago I discovered what I thought to be an itchy sore mole just at the top of my rib cage. I thought it was being annoyed by by bra but went to the doctors and he didn't think it was a cause for concern but referred me to the dermatologist. When my appointment came through I stupidly cancelled it as it was no longer bothering me. Now just the other day I noticed it was bleeding and looked rather frightening, it looks like a nodular melanoma, it's about 5mm across and is slightly raised, it's not flat. I went to the doctors yesterday and she didn't seem to have huge concern but I don't think she was grasping the seriousness of nodular melanoma, I think she may have thought I meant a normal melanoma (which is of course also serious, I just mean for the fast spreading of nodular) (I was in a bit of a mess during the appointment and don't think I explained myself properly) what's making it worse is that I have a swelling in my neck on the left hand side, it looks to me as its my Virchows node (which isn't good) but the doctor said it was a strong or over pronounced neck muscle (it's never been like that before) When you press it it doesn't feel hard. I'm sometimes getting a tightening sensation in my neck and under my armpit. I also have a swelling in my arm crease on the opposite side of the elbow around my Supratrochlear lymph nodes, this is quite soft and hurts when pressed, the doctor said it was just fatty tissue. Added to this I have pins and needles quite often going up and down my arm on the left side and sometimes my leg. I am so scared that this is metastasised melanoma and don't know what to do. 

What did other people nodular melanoma feel like? I've done the firm test and I'm not sure what I'm looking for, how firm was it? Is it really hard feeling. Did the surface of yours feel like a spot? Do they feel smooth?
Thank you for any help or information anyone can give me.
Ive been back to the doctors and I've had bloods taken. This doctor agreed it wasn't a muscle that was sticking out on my neck and that my neck felt spongy where it was swollen 

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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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