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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budeny's picture
Replies 7
Last reply 5/8/2018 - 3:36pm

Would you please recommend a melanoma specialist in and around Minneapolis? 

I've checked University of Minnesota Cancer Center directory and found only one so far that specializing in melanoma. 

 

Thanks!

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/8/2018 - 1:58pm

Hey all! I had a mole removed from my hairline on the left side of my forehead a week ago. I just received my diagnosis yesterday and I don't know much about it, as I never got the pathology report, just told that the biopsy showed melanoma, but no one told me what stage or anything like that. It was told to me that it was 0.5 mm and no signs of ulceration. I have a consultation with a surgical oncologist to talk about further excision on May 7th.

I'm honestly freaking out and I can't stop googling, which is the worst thing I can do.

I know it's all a waiting game from here on out and I'm trying to distract myself with studying for finals, but it's only going so well.

I've had a swollen lymph node on the left side of my neck for longer than I can remember and it's hard to touch and doesn't move. On the right side of my neck the lymph node is a bit swollen as well, but not hard to touch and moves when pressed.

How likely is it that this is stage III?

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/8/2018 - 1:53pm
Replies by: almostalice, bjeans, Ohio mom, Janner, iskitwo, Anonymous

Ive been diagnosed with melanoma and I will be seeing a reknown cancers care center physician specializing in melanoma-but this is  after knowing I have had this diagnosis for 2 weeks and then I find out it is just for a consultation?!!!   Why can’t they even do an excision on that day if they know the shave biopsy was malignant?!  They say I am a minimum of stage 1a, but really it’s anyones guess how deep it may go because of the initial way of the biopsy-shaved.  Does anyone have any idea how I could manage to get them to excise the area?  I am losing my mind.  I go next week and I can’t imagine waiting to just have another scheduled appointment!!!  I am trying to stay calm, but my anxiety is through the roof.  I cry all the time.  Could I “demand” an excisional biopsy without being tossed out?  Any suggestions would be helpful!!

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Preludejo's picture
Replies 3
Last reply 5/8/2018 - 1:42pm
Replies by: almostalice, Preludejo

Hello, so Im in a bit of a panic. Yesterday while just random feeling the back of my Knee I felt a little bump and at first thought it was a Blood Blister. Wife said def looks like some kind of mole. I have never noticed this before so quickly made an appointment with Dermatologist.

 

she did a scrape Biopsy but didnt say it looked good/bad etc so Ive been kind of worried. Im 37, no history of skin cancer in family.  The size was about 1/2 the size of Pencil eraser and seemed more raised yesterday than it did this morning. Anyway. Its off me now but here is a pic I took this morning before it was scraped off.

[img]https://flic.kr/p/H9qw5T[/img]

 

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Preludejo's picture
Replies 3
Last reply 5/8/2018 - 1:37pm

Hello, so Im in a bit of a panic. Yesterday while just random feeling the back of my Knee I felt a little bump and at first thought it was a Blood Blister. Wife said def looks like some kind of mole. I have never noticed this before so quickly made an appointment with Dermatologist.

 

she did a scrape Biopsy but didnt say it looked good/bad etc so Ive been kind of worried. Im 37, no history of skin cancer in family.  The size was about 1/2 the size of Pencil eraser and seemed more raised yesterday than it did this morning. Anyway. Its off me now but here is a pic I took this morning before it was scraped off.

 

 

 

 

 

 

 

 

 

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Dear MPIP community,

We are reaching out on behalf of a pharmaceutical partner who seeks the perspectives of melanoma patients as they design their clinical trial protocol. They need your feedback so that the design makes the most sense for people with melanoma.
One-on-one telephone interviews will be scheduled at the convenience of the patient.

If you:
•        are interested in providing feedback about trial design/protocol
•        are an adult patient with metastatic melanoma and
•        have failed a prior therapy with anti-PD-1 or anti-PD-L1

Please contact Beth Allgaier at ballgaier@melanoma.org with questions and to participate in a one-hour phone interview.
Thank you – your voice matters in the drug development process!

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/8/2018 - 9:06am
Replies by: Anonymous, marta010

Blad spots the size of quarter on head

Question: 

1. Could it be from stress?

2. Could Opdivo cause bald stops on your head? ,

I have noticed a few perfect round bald spots where the hair is just gone.

I have an appointment with my Family Dr. next week and I am for sure to ask him.

Just courious if anyone else has had this issue.

Thanks All.

 

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budeny's picture
Replies 7
Last reply 5/7/2018 - 4:40pm

Hello, 

Have a question about trials.

Are they generally 100% covered by whoever initiate/sponsor them or there are still costs that should be covered by insurance?

The reason I'm asking is that I'm getting offered one trial of pembro/ipi plus third drug combination and its only pembro cost that's covered by trial and everything else will go through insurance - ipi and scans. And can be even some extra procedures that will be completely on me like extra blood draws or biopsies..

Thank you,

Michael

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MelanomaMike's picture
Replies 14
Last reply 5/6/2018 - 7:59pm

Hi MRF Family, im finally here, sorry i was MIA "again" and i know i said i would write more but, im just not having a good time like someone said i wouldangry....Current Status Report: started Pembrolizumab Nov 2017, had 7 infusions of it with 2 scans  showing desease progression, 1st scan was a bit better as i wrote about back when it happened but, last weeks CT w/contrast showed absolutley nothing to hip hip huray about, all tumors did get larger, no new ones, none shrunk, zilch, just got bigger, i didnt even ask the sizes, BIGGER is freakin still BIG in my book, all tumors are to big...

 Plan B is {what my Oncologist & i have called it} is,  the ol' Opdivo/Yervoy combo. This will began next week May 11th {Friday thank God} so, i know it comes with more side effects then Pembro {wich I had very little of except a 45.3  TSH Thyroid level {i know right?}...Screw it, bring it! Plan B has got to work cuz Plan C SUCKS! A week stay "In-House" treatment of IL-2  or whatever else they would plan on givin me...no no no...Ipi & Dipi  is Gunna Work!...theres my latest, now its time to browse and reach out to some new folks here since ive been on last...Take care ya'all, ill keep you posted...Warrior On Bro's & Sisters, Mike..

 PS: Anyone who has or is currently taking the Opdivo/Yervoy combo please reply, id like to get a heads up on effects...Thanx..

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Hi All! I have not been dx with melanoma, but I do have a bunch of dysplastic nevi. I thought it would be a good idea to have copies of my pathology reports from my biopsies, and until I can see my derm again, was wondering if someone could help me understand one of them/answer a couple questions?

"The epidermis is irregular with elongated rete ridges, hyperpigmentation, and diffuse melanocytic hyperplasia confined to the basal epidermis. Melanocytes are also present in the dermis. Junctional melanocytes vary in size, shape, and distribution but are condined to the basal epidermis. Rete ridges are elongated and surrounded by concentric fibroplasia. Lymphocytes, histiocytes, and melanophages are present in the dermis."

I have 2 or 3 dysplastic nevi that had this same description in the reports, all came back mildly atypical. My questions mostly concern the last sentence...

1 - The way I understand that sentence, is that my immune system is doing it's job and "attacking" cells it sees are atypical. If that is the case, then shouldn't all my atypical moles have that sentence in their descriptions (because they do not)? Could that be because these particular moles were "active" or "changing" at the time of biopsy and the others without that sentence were "stable," or something along the lines of that?

2 - Should one worry if that sentence is in there? My derm doesn't feel the need to completely excise mildly atypical moles (he does moderate and severe), even if there is pigment regrowth, UNLESS the regrowth is outside the scar or just looks really funky...would it be better to ask him to excise the rest since that sentence is in there (he will if i ask him to)?

Thank you for your help!! :)

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TexMelanomex's picture
Replies 12
Last reply 5/6/2018 - 12:28am

Hey Warriors,

Back down at MDA for my periodic scans today and another round of Pembro tomorrow. Scans will be resulted tomorrow so I'll update after I get some news. Hoping the PV-10/Keytruda combo has wiped out these last two nodes in my abdomen but proof will be in the pictures. 

Hope you are all warrioring well and kicking some Melanoma ass.

Tex

Tex

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slh4448's picture
Replies 14
Last reply 5/5/2018 - 2:57pm

Hey everyone,

i know that there are several people who have been or are currently on Yervoy 10mg. I was just curious if you could share anything about the side effects and how long side effects lasted? I have my first infusion tomorrow morning.

Thanks all,

Stacy


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MelanomaMike's picture
Replies 2
Last reply 5/5/2018 - 2:57pm
Replies by: obtu.bt, ed williams

Is it me or does "Anonymous"  here at MRF have "multiple personalities?"

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My mole is located in my upper right buttock. Had it checked by a dermatologist and she said it was nothing. Im not sure what the dark pigment around my mole is.

There is no pain in the mole or the area around it but sometimes it itches around that area although im not sure if its because of my sciatica (nerve pain in my lower right buttock and leg that can also cause itching) or just me being paranoid.

I also have some stretchmarks from losing weight, also is it ok to have a dry mole that has some cracks?

 

http://i761.photobucket.com/albums/xx255/robrt_54/IMG_1260.jpg

http://i761.photobucket.com/albums/xx255/robrt_54/IMG_1241.jpg

 

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Rowdy W's picture
Replies 8
Last reply 5/4/2018 - 8:43pm

Is anyone else taking nivolumab treatments and can discuss what, if any, side effects you might have experienced? I've only had one infusion so far and I'd just like to discuss side effects.

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