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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Finn's picture
Replies 13
Last reply 9/17/2018 - 2:55pm

I had my WLE and SLNB on the 5th. All went well - I have a probably 3 inch incision in my right shoulder and a 1 inch incision in my right armpit where they took one lymph node. My initial biopsy showed at least a T2B as it was at least 1.1 mm thick with 2 mitotic rate, nodular mm. The biopsies now came back with the lymph node was clean and the excision showed no more melanoma cells (which was bizarre as the first biopsy the margins were not clean so there should have been some cancer cells I would think). So I guess I am cancer free, though I don't feel it. Still dealing with pain from surgery and other malaises. 

The first couple days post-op were ok, I was in pain but I could take the edge off with pain meds. Then the pain increased exponentially. The incisions look fine - no sign of infection. The shoulder incision feels tight but it is a divit in my arm, deep enough. I am still fairly swollen in some places and I am very bruised. My entire upper arm (over/under) is covered in bruising. I have a very high pain tollerance and I never take pain medicine unless I have had a major surgery. The pain over the last 5 days has been agonising. Pain medicine has no effect, ice is not helping anymore, I am in pain whether I rest it in one spot or move it around. No narcotics are working so I don't see the point to taking them. I am thinking now it may be neuropathic pain and I may have to try to get my surgeon to recognise that so I can get a med that will help with that, but I also feel deep bone pain. I am not sure what the issue is. I know think a seroma has formed under the armpit incision. 

Anyone experience severe pain? What worked for you?

 

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Amy Green's picture
Replies 5
Last reply 9/13/2018 - 8:43pm
Replies by: Amy Green, Janner, doragsda

I'm a 29 year old female. Had a mole biopsied which came back positive for melanoma. I'm waiting on a call from the oncologist to know what comes next but hoping someone can look at this and tell me. Results below, thank you in advance!!

Malignant melanoma, superficial spreading type

Comment: Tumor Stage (pT) - T1bNxMx
Clark Level: IV
Below thickness: 1.0 mm
Radial (non-tumorigenic) growth phase - Present
Vertical (tumorigenic) growth phase - Not identified
Mitotic figures: 1/MM2
Ulceration: Not identified
Regression: Not identified
Vascular/lymphatic invasion: Not identified
Perineural invasion: Not identified
Microscopic satellitosis: Not identified
Tumor-infiltrating lymphocytes: Non-brisk
Associated melanocytic nevus: Not identified
Predominant cytology: Nevoid
Surgical margins: The margins are free of invasive of melanoma. The melanoma in-situ component extends to one lateral margin

ICD: D48.5
R/O: Neoplasm of Uncertain Behavior, Dysplastic Nevus
Morphology: Plaque

Present within the epidermis and dermis is a proliferation of atypical melanocytes. The dermal component displays small cell (nevoid) morphology. The epidermal atypical melanocytes are arranged in nests and single cells at the dermal-epidermal junction, and as solitary units above it. Obvious extension of the epidermal component beyond the dermal component is identified. Double immunohistochemical studies using Ki67/MART-1 reveal moderate proliferation index. Deeper sections have been examined.

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Dave61184's picture
Replies 6
Last reply 9/19/2018 - 10:31am

Hello prayers for all. I was diagnosed with stage 1a and needless to say very scared. Is there any such a thing as a happy ending as to everything I read post of 1a spreading and that scares me. I have had my wle and they stated I’m all clear but still feel like I’m missing something cause nothing else was offered by my dermatologist  and didn’t even get referred to an oncologist. Even my regular dr don’t seem concerned. Well anyways I guess I’m just scared of the unknown. Below is my original path info before wle. Everyone keep up the good fight!

HISTOLOGIC TYPE: SPITZOID BRESLOW'SDEPTH/MAXIMUMTUMORTHICKNESS: 0.3MM CLARK/ANATOMIC LEVEL: II
MARGINS
PERIPHERAL MARGINS: INVOLVED.
DEEP MARGIN: FREE. ULCERATION: ABSENT.
SATELLITOSIS: ABSENT
MITOTICINDEX: 0
LYMPHO-VASCULAR INVASION: ABSENT. NEUROTROPISM: ABSENT.
TUMOR-INFILTRATING LYMPHOCYTES: NON BRISK. TUMORREGRESSION: ABSENT. LYMPHNODES(IFAPPLICABLE): N/A
PATHOLOGIC STAGE (AJCC 8TH EDITION): PT1A, PNX, PMX
See melanoma table. After H and E review, a Melan-A stain was performed to highlight the melanocytes in this lesion. Controls stained appropriately. This melanoma exhibits an epithelioid cytomorphology; however the lesion asymmetric and poorly circumscribed with extensive pagetoid scatter across the entire lesion to all levels of the epidermis. With these features, this is interpreted as a superficially invasive melanoma with some spitzoid features. This case has also been reviewed by other dermatopathologists, Drs. Smith and Murphy who agree with the diagnosis.

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Anonymous's picture
Anonymous
Replies 6
Last reply 10/7/2018 - 10:14pm
Replies by: Anonymous, amlye, Janner, mandyjill

Hi there, 

I had my first mole check, which led to a biopsy and now I will be going in for another procedure (I believe a WLE). I have a question about my biopsy results, final diagnosis: severely atypical junctions melanocytic proliferation, which I know is not yet melanoma. There is a statement in the report that says it is “concerning for early evolving melanoma in situ, lentigo maligna type”. Does that statement change this to an in situ? Maybe it was so close they weren’t sure which to call it? I realize I’m very lucky with either situation and many here are facing more complicated diagnoses. I am trying not to worry too much, and so I’m staying away from he Internet (other than this forum) to find some answers. How concerning is this diagnosis? I’m thinking this one procedure and regular mole checks should be adequate after this? I am wondering if, even with clear margins after my WLE, is it possible for it to not be completely removed from my arm? Also, I’m wondering why a Mohs surgery is not the preferred treatment, is a WLE as effective? Thanks for your insight on this, I appreciate it. 

Amber Seely 

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Savymoo23's picture
Replies 12
Last reply 9/24/2018 - 8:13am

GAHHHHHH my stupid insurance denied my doctors request for a PET scan because I'm only stage 2B. BLAH. Looks like they are going to do CT scans with contrast? Does a CT even compair too a PET scan? I'm so frustrated.

Savannah Price

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MelanomaMike's picture
Replies 5
Last reply 10/3/2018 - 4:19pm

Hi Ya'll, just a quick note to update you all on our MRF brother Tex {Texmelanomex is his handle here} iv been buddies with him for quite some time  {as best we can for being 2k miles away from eachother!} , and i know alotta you's love him so, hes doing fine!  if you remember, back in like Late July, early August {2018}  his CT Scan {and i believe a PET} revealed NED!! his treatment was a success, PV-10 in combo with Pembro {PV10 for his neck tumor, Pembro for abdomen tumors} and its been great ever since! hes still doing the Pembro as a maintanence cuz its effective, i believe he just completed #16 last week.

So, if yer all wondering, hes just taking a "Mental" break  basking in the afterglow of a much needed NED report!..Hell come around soon, he knows damn well the fight is still in progress even though the enemy has retreated....So ya, good ol' Tex...hes good...Mike

Im Melanoma and my host is Mike..

www.covvha.net

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Antonio's picture
Replies 5
Last reply 9/14/2018 - 12:11pm

Hello Folks 

My father was diagnosed with an atypical spitz tumour in 2005 . He lived very well for many years but in 2014 the cancer spread to lymphonodes in the pectoral regions , after 4 years several mets were found in the mediastinum and in the lungs . He has a nras mutation which is less common than braf but also aggressive and unfortunately we don’t have much options beside the immunotherapy. He started in March 2018 and ct scans showed in July that is progressing. 

Just few weeks ago we was treated with radiotherapy and now is suffering several side effect . 

We are of course desperate and we don’t know what to do . I wrote on the forum to check if anybody had some experience with nras mutation in melanoma and If anybody knows about new trials coming up focusing on this mutation 

thank you again 

antonio

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mrsaxde's picture
Replies 9
Last reply 9/14/2018 - 11:21am

Hi Everyone,

As I have related in other posts I have been using medical cannabis for nausea and other side effects of the treatment I received at NIH. Also, after my July follow up at NIH was the same as the previous ones -- nothing growing at a huge rate but nothing shrinking -- I added Rick Simpson Oil to my regimen.

In July they told me that there was a small chance my tumors could begin to respond to the TIL therapy by the next follow up but they didn't sound too hopeful. Last week, after six weeks of taking Rick Simpson Oil daily, the radiologist said my target lesions were "unchanged to slightly larger." Dr. Goff, when she looked at the scans, said that to her one has actually gotten slightly smaller. They were very happy. Was it late activating T-cells from the trial? Did the RSO help intensify my response? Something is working, and it didn't seem to start until I added RSO to the mix.

My only problem with the RSO is that after doing some research I've come to believe it is what is causing my current bouts of nausea. I tried to make it to Simpson's recommended 1 gram a day, but I've had to back off the amount I take.

I'm looking for others on the board who are also using RSO or other cannabis preparations so we can compare notes. Not looking for anybody who is anti-pharma and thinks cannabis is the total answer. It's part of the puzzle. So if you're using cannabis for symptoms or treatment and agree with me that cannabis makes a good adjunct treatment and needs more study, drop me a line, either on the board or in private.

-Bill

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Anonymous's picture
Replies 6
Last reply 9/13/2018 - 12:12pm

Hi friends! How many infusions have you had before immunotherapy started working? As I am aware of, it takes longer than targeted thearpy and each person is different - some respond after the first infusions, while others need more time.

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Grifsy's picture
Replies 18
Last reply 9/15/2018 - 11:46am

I'm pretty shaken up.  I had what I suspected was a basal cell CA on my right forearm.  I first noticed it just over a year ago, around the time that a recurrent basal cell was excised from my left forearm.  The dermatologist said it was a keratosis.  Two visits and one year later, even though he still thought it was a keratosis, he decided to take a closer look.  He did a shave biopsy and then decided to do a curettage.  As he scraped away the tissues, he kept reaffirming that it was coming off like a keratosis.  When he was done, I had a "crater" on my arm a little larger than the diameter of a nickel.  Over the past month, new tissue has slowly grown in to mostly fill the "crater".

Imagine my surprise (and his too, I guess), when the path report came back as melanoma, superficial spreading type, "at least Level II".   The dermatologist said this was "in situ", but if it's into the dermis, that isn't correct, is it?   He also referred me to a surgical oncologist for a wide local excision (1 cm).

According to the path report, the margins of the shave biopsy (including the base) were all positive.   Since it was a shave biopsy, the dermatopathologist couldn't determine the depth.  We just know that the melanoma is deeper than the shave biopsy and is into the dermis.  Plus, there is no lesion on my skin surface now, just the newly formed skin tissue.  So - how will the surgeon know how much to remove?  Will the 1 cm margins be measured from the edges of the "crater"?  

I know I can (and will) ask the surgeon about this.  My appointment isn't for ten more days, which seems like forever.  Does anyone have any experience with something like this?

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Thought I'd share this interesting study my husband came across.  Obviously, the sample size is very small, and this hasn't been used on humans, but we thought the findings were promising!  

Article: https://www.medicalnewstoday.com/articles/323017.php

Study: http://www.pnas.org/content/115/37/E8698

Keep on fighting the good fight.  <3 

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lkb's picture
Replies 4
Last reply 9/11/2018 - 4:52pm

Hello, all. I'm having my first infusion this week and am open to any tips for the newbie. What do you wish you had known for your first? Also, anyone have results--good or not--with fasting or caloric restriction for the day before/of infusions?

October 2017 primary scalp WLE; SLNB removed and revealed two positive nodes in neck. July 2018 scan shows positive nodes same neck location. August 2018 partial neck dissection. Stage 3C. September 2018 started Nivo.

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/12/2018 - 12:33pm

HI All,

 

I just moved into CT, USA recently. I have mucosal melanoma/ Could you please guide to choose a good melanoma specialists in Connecticut.

 

Thanks,,

Muru

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Bubbles's picture
Replies 30
Last reply 9/13/2018 - 9:05pm

So much thanks for all the love that has been sent my way from all my melanoma peeps.  My best wishes to those of you also facing new hurdles.  Here's my best report of my status for those of you that are interested:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/09/how-to-move-seamlessly-from-one-deadly.html

love to you all. c

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/13/2018 - 5:07am
Replies by: Maureen038, SOLE, lkb

My husband Bill has been on a her-2 chemo drug for about three years. He had a scare last year and had a liver met which turned out to be non cancerous. Unfortunately, he had a scan this morning and he has two new lung nodules after being stable for almost three years. He has had three lung vat surgeries, TIL treatment , ipi/nivo, DTIC and now the her-2 drug. It feels like a kick in the gut!

Maureen

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