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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cavsnut's picture
Replies 6
Last reply 7/7/2016 - 1:25pm

2 years ago I go the call from my oncologist office...still vividly remember as I sat at rhe kitchen table for hours, at least it seemed like hours, after she said "positive". I had a positive lymph node... albeit microscopic, it was still goes on I thought, and fortunately for me it I had my 2 year CT scan, blood work and lymph node ultrasound, and remain NED from my stage 3a diagnosis... It was a very arduous decision to watch and wait , but fortunately the right one for me so far...God bless us all...



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Scooby123's picture
Replies 3
Last reply 7/7/2016 - 12:02pm
Replies by: jennunicorn, Maria C, JoshF

Hi Guys,

Sorry been away a while had a lot on and recovering from Gamma Knife. I went yesterday for my  3 month scans, results next Thursday so a week of worry. So me and my daughter of to majorca for long week end.

Hope you all having a nice day best as you can and i will let you know next week results.



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gigembritt's picture
Replies 11
Last reply 7/7/2016 - 12:34am

I have an apt at MD Anderson next week. But I was wondering if anyone could give me any feedback on my path report.  Most of these terms are way over my head.

Sections reveal a compound proliferation of melanocytes composed of atypical epitheloid cells arranged redominantly in nests along the dermo-epidermal junction and superficial reticular dermis, in association with host respons including lymphohistiocytic infiltrate and mild dermal fibrosis.  In addition, there are smaller melanocytees located adjacent to the larger atypical cells.  A HMB$% immunohistochemical study performed at the referring institution hightlights both the larger melanocytes in a patchy weak fashion, while the smaller melanocytes are essentially negative.  An immunohistochemical study performed on unstained slidescut from a paraffin block recieved using MART1/Ki67 highlights both the melanocyte populations and rare positivity for Ki67 is noted. Thought the atypical melanocytes have come nevoid features, due to the presecense of cytogic atypica and host respone, this lesion is interpreted to represent a melanoma arising in assocation with a nevus.  Therefore, the following parameters will apply:

Melanoma, invasive, nodular type

clark level atleast IV

Breslow thickness at least .44mm

Mitotic figures <1

TIL, Present, non-brisk

Associated melanocytic nevus present predominantly intradermal nevus

predominant cytology, epitheloid and nevoid

Surgical margins: invasive melanoma and nevus present at deep tissue edge. 

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Bubbles's picture
Replies 4
Last reply 7/6/2016 - 11:38pm

....I just wanted you to know that Miss Pissivity thinks of you often.

Cheers, my friend. Celeste

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keepthefaith11's picture
Replies 26
Last reply 7/6/2016 - 8:22pm

So really bad news. My had had the MRI today even though they could not complete it due to him not cooperating. They were however able to see he has 13, yes, 13 brain mets of varying sizes...

Please, someone give me some guidance..
WHAT do we do now...


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beneficii's picture
Replies 1
Last reply 7/6/2016 - 8:20pm
Replies by: MoiraM

It's hard to get a good look, but I was able to pinpoint the spot in question by recording a video with my back to the computer and putting my hand on. When I feel the spot in green, I notice that it feels kinda rough, crusty, different from the other moles on my back which I either can't feel at all or which have a smooth, flabby bump. In multiple pictures, not just this one, it looks like a mole but it's looks different from the others. Here is the image:

I'm going to try to move up my appointment on 7/21; also, I want to get an earlier-in-the-day appointment.

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Dear MPIP Community:

We still have 10 spots open for the Immunotherapy in Melanoma: A Celebration of Advances event coming up on August 12-13 in NYC. This event is for patients (their caregivers) who are taking or have taken any form of melanoma immunotherapy. Registration is requred by Monday, July 11th. The MRF will reimburse you and one guest up to $300 per person for travel expenses. Travel arrangements must be made by July 20th. Your one night stay in Times Square is also covered, as are all meals associated with the event. An agenda and the registration form can be found at the link above.  All questions can be directed to me at or feel free to give me a call at (202) 742-5945.. 

I hope you can join us!


Shelby - MRF

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Anonymous's picture
Replies 4
Last reply 7/6/2016 - 4:36pm

So I am 3 years out from my original stage 1-2 diagnosis with surgery and negative lymph nodes and there is now a slightly tender round lump near my incision site, about 1/2 inch to the right and just under the skin.  I can feel it as a round bump, about half the size of a marble, a little painful to press on.  Can melanoma present UNDER the skin surface?  With no pigment?  Just a lump?  My original was superficial spreading on the surface, the multicolored flat type of melanoma.  Just got to wondering if the tender painful lump I've been feeling the past month or so might actually be melanoma, but a different type? 

If it is melanoma, and if I bring it up at my next skin check, how do they check to see if it's melanoma?  Does it have to be biopsied?  Ultrasound or CT?

Any and all insights appreciated.

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Patrisa's picture
Replies 3
Last reply 7/6/2016 - 2:21pm
Replies by: Polymath, Patrisa

Hey dear friends, 

can someone please explain the importance of the mentioned marker?

my fathers last report states that his s-100 is  bordeline elevated, his ldh is normal and all other clinical signs are normal... Is this something we should be worried about or it maybe isn't related to mel? It is higher than his levels from the last check up 3 week earlier...

he is otherwise on keytruda and his first pet scan (in may) showed total regression of his mets in the lungs and almost completely gone soft tissue met which was really large...

any input will be greatly appreciated...



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gigembritt's picture
Replies 2
Last reply 7/5/2016 - 9:35pm
Replies by: gigembritt, Janner

My recent path report says that my nodular melanoma is :

Clark level at least IV

Breslow Thickness at least .44mm


No what I am confused about it that it doesnt seem to match up.  The Clark level would put it past a depth .44mm right?

And why do they use "at least" ?





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Anonymous's picture
Replies 4
Last reply 7/5/2016 - 6:59pm

Doctor decided i should get scans every 6 months after yervoy. Do people usually get ct scans or pet scans. Thanks

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Anonymous's picture
Replies 4
Last reply 7/5/2016 - 10:22am
Replies by: MoiraM, Maureen038, Casitas1

Does anyone know if tooth decay (dental caries) is a known adverse effect of immunotherapy, specifically Keytruda and/or Ipi?

Thank you!

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JoshF's picture
Replies 19
Last reply 7/5/2016 - 10:19am
Replies by: Kimba67, Maureen038, JoshF, Mat, Bubbles, Anonymous, Polymath

HI All-

So things are took off fast this week!!! Been here in Houston since Sunday and have last procedure-leukaphresis tomorrow morning. They say cells should be ready first week of September.

I had 2 sub-q's removed by Dr. Wargo removed on Monday for potential future TIL Treatment. She's her and her PA Liz.

Met with research people on trials. Did all the screening, scans etc... scan wasn't great. Long & short of it was by my guess I have 7-12 tumors in lung, liver, pancreas and in abdominal area. Now that big tumor(s) are gone I think largest tumor was 2.4cm x1.6cm. They were mostly in the 1cm range. I didn't read it...too overwhelming for me. Dr. Diab said though there are a fair amount of tumors; this isn't an extremely large tumor load....and to be optimistic because he is. I guess I was more hopeful that the surgery removed a lot. Some grew a bit while others stayed the same. Apparently some smaller spots not picked up on scan almost 2 months ago are now in that 5mm range. Either sucks.

Dr. Diab is great and gave me a detailed rundown on Adoptive Cell Therapy. Honestly, everyone at MDA is very kind. I know some people think they're overrated. So far I've had good experience. I will start ipi back home in Chicago on Friday. Dr. Diab was going to discuss with Dr. Davies at MDA (my primary onc) and my local oncologist the possibilty of adding some abraxene or dacabarzine. The concern is that while I'm doing gap treatment, if I get colitis or other adverse side effect....I can be excluded from the modfied T Cell trial. It seems counteractive but he has science showing benefit....CELESTE????? Either way, ipi on Friday and probably looking at 2 doses before starting washout for trial. Is 2 doses enough to get a response? This is the scary part...the gap between growing cells and getting to treatment phase.

Still going crazy but have a plan....ang fighting to be optimistic.It's still so surreal how things just went haywire on me. I guess with all the years of just having a sub-q here there was a blessing; I just didn;t see it.

Be Well!!!




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

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Anonymous's picture
Replies 3
Last reply 7/5/2016 - 10:10am
Replies by: Kimba67, Anonymous, Janner

Can someone please explain:

Ive been reading all these stories about how people have melanoma in situ or stage 1 or 2 and then it suddenly reoccures in the lymph nodes or organs months to years later. My question is HOW? I thought in situ is 100% cureable with wide local incision - and about the same with stage 1 and 2. Would it be wrong pathology results? Or does this happen more often than what I thought?

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jvictoria's picture
Replies 10
Last reply 7/4/2016 - 11:56pm

Hi all,

Wanted to see if there was some insight on where to go, best place to get treated, what to expect. I'm playing the waiting game with my doctors to see what next steps might be.

I had an initial biopsy of the affected area July 2014... biopsy can back negative for cancer, positive for Lichen Planus. May 2015, same area was biopsied again... Biopsy came back melanoma positive... the unusual part of the melanoma is that it doesn't have any dark spots (aka colorless)

Was hoping for some insight as to where it would be best to treat this type of melanoma... I have a few options...

- Univeristy of Miami (Florida) Sylvester Cancer Clinic

- Northwestern University Chicago

- Moffitt Clinic Tampa, FL

Also, any general advice would be very helpful.



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