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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1Cbras's picture
Replies 1
Last reply 11/28/2017 - 12:18am
Replies by: Anonymous


I had an excisional biopsy on 11/13. I called the doctors office today and they still don't have the results. Can the timeline between a biopsy and WLE cause further harm. Thanks.

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cheris's picture
Replies 1
Last reply 11/27/2017 - 2:11pm
Replies by: cancersnewnormal

Hope everyone had a blessed Thanksgiving!  I had posted 6 weeks ago that I had been NED for over a year after almost 2 years on Keytruda; but my PET showed a spot although the CT showed nothing.  I just had an MRI which shoed nothing.  I was very relieved, but because of abdominal/intestinal isssues that I;ve been having my oncologist contacted my endo for testing.  Im now waiting to see what he wants to do.  The symptoms resemble IBS exactlt from what I've read, but I had a tumor and 8 in. of my small bowel removed 3 years ago.  The symptoms also resemble that period.

On another note, I am bewildered and concerned at how depressed I became over that spot tht showed on the liver.  I had gone from being NED after Ipi to 3 months later having over a dozen lesions in my liver 2 years ago.  I really don't like feeling so down, but I couldn't seem to help it.  I'm sure many of you have some tips on how to handle your anxiety I just heard on the news that 20% of cancer patients suffer from PSTD.


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agila0212's picture
Replies 5
Last reply 11/28/2017 - 5:38am

Hi guys, I hope someone can tell me about Subungual Melanoma and if it can appear overnight.

I was on a vacation and there was a lot of hiking under the sun and it was torture on my foot. The following day I notice a bluish black spot on my big toenail, about 1/4 in size of my toenail. It is not a straight line like I`ve seen on other website and it is also not round in shape. It is shape like a flame, where it is round on the botton and pointing on top. It doestnt hurt or anything. I though at first it was just a paint from the new aqua shoes I bought but I tried cleaning it but it seems to be under the toenail. 

Can a Subungual Melanoma that size appear overnight? I am freaking out here already!!!

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mrsaxde's picture
Replies 5
Last reply 11/30/2017 - 12:31pm

I received my 4th infusion of the 3rd cycle in the anti-LAG-3 trial at Johns Hopkins last week. CT scan is this Tuesday. Right now I'm hopeful and pessimistic at the same time.

My scan at the end of the 2nd cycle revealed that the lymph nodes in my chest were continuing to grow, albeit slowly. There were also two new "measurable" lesions -- one in my chest, one in my right armpit -- that got me a "progressive disease" classification. Dr. Sharfman said they had been enlarged on previous scans, but they just weren't big enough to be measurable under the RECIST criteria.

Dr. Sharfman wanted to give it one more cycle's worth of infusions, due to some people's response to immunotherapy coming slowly. He said he would have liked to see things moving more in a positive direction, but he wasn't quite ready to give up yet.

I'm being quietly hopeful, thanks to a couple of potentially positive signs. Over the past 3-4 weeks I have gotten progressively more itchy, with a little more intense rash. And my eosinophil level, which I have read in several places is an indicator of prognosis for immunotherapies, has been steadily climbing. Since the job of the anti-LAG-3 antibody (now known as relatlimab) is to revitalize exhausted t-cells, maybe something good is starting to happen.

So any or all of you can send some positive thoughts, vibes, prayers, etc my way I will certainly be grateful.


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Dhva's picture
Replies 12
Last reply 11/27/2017 - 9:30pm
Replies by: Mark_DC, Dhva, cancersnewnormal, Anonymous, jennunicorn

Hi all - my loved one just received his 4th Nivo treatment last week. In addition to developing a dark red flushed look during the infusion, he has become increasingly irritable over the past several weeks. Gets very angry over very little, to the point where you have to tiptoe around him. Completely out of character. He is also tired and seems very down and fatalistic. Could this have something to do with the Nivo?  Just worried about these changes. Has anyone else experienced this?

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Nick C's picture
Replies 13
Last reply 12/5/2017 - 10:25pm

Hi all...

Question: Has anyone switched their treatment from Keytruda to Yervoy? If so, any major side effects?


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landlover's picture
Replies 2
Last reply 11/25/2017 - 10:14pm
Replies by: landlover, jennunicorn

Hi folks-

Quick background- I was diagnosed with Stage 1 back in Nov. 2015 which progressed to stage 4 fall 2016.  My original lesion was on my neck and I had mets to lungs.  I did ipi/nivo for 1 treatment then nivo 5 more treatments and had full resolution of all lung mets.   I did such a short course because of side effects ( thyroiditis, colitis, uveitis) .

I am now on surveillance with scans/ Dr. appointment every 3 months.  So, during the summer I noticed a purple/ brown spot under one of my toenails.  I honestly didn't think much of it.  I also have my toenails painted almost continuously so I haven't looked at them much.  I took the polish off yesterday and still have the same dark area under my nail. 

I go for scans and Dr. appointment  in 2 weeks so I can ask about it soon, but is there really a chance of getting a mel under my nail after being diagnosed with another form?

Thanks for any input.


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jennunicorn's picture
Replies 13
Last reply 12/2/2017 - 10:15am

Hi friends!

I am a little over a week out from surgery to remove a lymph node in my left armpit (they had to take 3 since two were clumped on to the bad one). I have found that my upper arm, not really the area of incision, hurts quite a bit. Feels like a tingling pins and needles and pinching pain, definitely feels like nerve pain. I didn't experience anything like this with my groin SLNB so this is new and pretty darn uncomfortable. Just wondering for those who had SLNB in their axilla, did you also experience nerve pain, if so, how long did it last? Tylenol and Advil don't do anything for it. I've been using ice packs to numb the area to be a little comfortable for a bit until that wears off, not the easiest thing to do while working though.

Hope everyone had a good thanksgiving with family and friends. 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

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Anonymous's picture
Replies 10
Last reply 12/7/2017 - 3:09pm
Replies by: GeoTony, Anonymous, cjm22, Ed Williams

Are there recommended Canadian melanoma specialists?

What about specifically in BC?

There seems to be a melanoma centre or two in Toronto but we can't move there. How else could we get second opinions or treatment ideas from melanoma specialist oncologists?

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Anonymous's picture
Replies 2
Last reply 11/25/2017 - 9:45am
Replies by: Anonymous

Anyone develop  Subungual melanoma after their original Melanoma?

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1Cbras's picture
Replies 2
Last reply 11/27/2017 - 9:09am
Replies by: Treadlightly, Anonymous

What are the treatment options for ALM? Also, I'm looking for recommendations for a melanoma specialist in Northern NJ. Thanks in advance.

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Anonymous's picture
Replies 4
Last reply 11/26/2017 - 12:35pm
Replies by: Janner, Anonymous

- Dear everyone,


First, thank you for your help and consideration regarding this post.


September 2016, I noticed that one of my mole turned pink / red instead of light brown I think.

My dermatologist did a shave and sent it to the laboratory for a biopsy.


REPORT 1 : Shave Biopsy at Dermatology Institute

0.4 cm in greatest dimension

Microscopic Description:

Sections show skin with a domed surface. The overlying epidermis is hyperplastic and shows hypergranulosis and compact hyperkeratosis. Situated at the D-E junction are nests of large spindled and epithelioid melanocytes, some of which are separated from the epidermis by clefts. Kamino (dull pink) bodies are present. The dermal component shows focal maturation and a single deep dermal mitotic figure is seen within intradermal melanocytes.

Diagnosis :


Skin, right lower abdomen shave biopsy:

- Atypical Spitz tumor, suspicious for malignant melanoma, involving the peripheral margins, deep margins negative.

Comment : 

The fiding are worrisome for a malignant melanoma. Features in favor of this include poor circumscription, asymmetry, and the presence of rare deep dermal melanocytic mitotic figures. Additional FISH genomic would be helpful. A complete excision is recommended.

--> Okay, I was totally lost at that time, my dermatologist told me that it was very small, but we have to cut it out. 

Report 2: Complete excision, biopsy at UCLA Health 



- Residual atypical melanocytic proliferation, excision margins are clear

- Dermal scar and prior biopsy site changes


Recut sections for send-out (requested by the patient) were performed and reviewed. A similar somewhat "epithelioid' proliferation is identified within the region of prior biopsy changes. This may represent atypical epithelioid melanocytes (as originally described) or "epithelioid" histiocytes secondary to the prior biopsy. No malignancy is identified the sections examined. Excisions margins are clear.

Finally, I asked for a second opinion in France, I sent all my slides there.

The final diagnosis is:

Atypical Spitz Tumor (MELTUMP) 

No evidence of malignancy  --> no Spitzoid Melanoma, especially because proliferation and mitotic rate is not high, but the Spitz has some atypia ( cannot translate it into English, it is so hard :)

Well, I am really lost, I really do not understand what I had. Now both of my dermatologist from Los Angeles and France told me that this is over. Just that I have to be Sun Smart to make sure that I will not get a second suspicious mole.

Thanks for your time,





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Hey warriors, someone may have already posted this or a link to it but I didn't see it so if I'm being redundant just skip.

Melanoma Staging: Evidence-Based Changes in the American Joint Committee on Cancer Eighth Edition Cancer Staging Manual. Gershenwald, Scoyler, Hess, Sondak, Long, Ross, Lazar, Faries, Kirkwood, McArthur, Haydu, Eggermont, Flaherty, Balch, and Thompson. NOV/DEC 2017, CA: A Cancer Journal for Clnicians. 

(I included the full citation in case any of you have docs that authored). We will need Bubbles or someone smarter than I am to decipher some of this but here are the main points.

This will likely be of most use when reading path reports or notes. I suppose there might also be some treatment implications to follow. Although the Eighth addition was published in OCT 2016, it will not be formally adopted in the US until 1 JAN 2018.

Based on 46,000 melanoma patients, from 10 centers worldwide, with stages I-III melanoma, since 1998, the following changes have been established.

1) Tumor thickness measurements to be recorded to the nearest 0.1mm not 0.01mm

2) Definitions of T1a and T1b are revised (T1a, <0.8 mm without ulceration; T1b, 0.8-1.0 mm with or without ulceration or <.08 mm with ulceration) with mitotic rate no longer being a T category criterion.

3) Pathological (but not clinical) stage IA is revised to includeT1b NO MO (formerly pathological stage IB).

4) The N category descriptors "microscopic" and "macroscopic" for regional node metastasis are redifined as "clinically occult" and "clinically apparent".

5) Prognostic stage III groupings are based on N category and T category criteria (i.e., primary tumor thickness and ulceration) are increased from 3 to 4 groupings (stages IIIA-IIID).

6) Definitions of N subcategories are revised, with or without the presence of microsatellites, satellites, or in-transit metastases, now categorized as N1c, N2c, or N3c based on the number of tumor involved regional lymph nodes, if any.

7) Descriptors are added to each M1 subcategories for lactate dehydrogenase (LDH) level (LDH elevation no longer upstages to M1c.

8) A new M1d designation is added for central nervous system mestastasis.


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Anonymous's picture
Replies 2
Last reply 11/23/2017 - 4:58pm
Replies by: Tressa48, Janner

Had a shave biopsy last week.  Nurse called yesterday and said I had to have an excisional biopsy done soon but not to worry because it's not melanoma.  I'm scheduled for the next biopsy on December 4th.  I'm just not sure why I have to have another biopsy if it's not melanoma.  This is what my path report says:

Skin of lateral back, T4, right, shave biopsy:
Melanocytic nevus, compound type with unusual architectural features and
severe cytologic atypia. See microscopic description and comment.
Margins negative for nevus in the plane of the sections examined.

Histologic sections are that of a shave biopsy of skin to the deep
reticular dermis. Centrally, is a compound melanocytic proliferation. The
majority of the lesion is an epidermal melanocytic proliferation consisting
of enlarged vacuolated melanocytes with variable cytologic atypia forming
irregularly sized and shaped nests and single cells which are unevenly
spaced along the dermal epidermal junction. In the superficial dermis are
smaller melanocytes forming nests with a tendency for smaller nests and
single celled growth with descent. A rare mitotic figure is present in the
superficial dermis. There is an associated mild to moderately dense
superficial lymphomononuclear infiltrate and associated dermal melanocytes.
Immunohistochemical stain for MART 1 performed and interpreted here
highlights the aforementioned features and rare scattered melanocytes
demonstrating upward migration but no well-developed upward migration or
confluent growth is identified. Deeper sections have been reviewed.

Any help interpreting this would be greatly appreciated.

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