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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cjm22's picture
Replies 5
Last reply 4/19/2018 - 12:40pm

My boyfriend had his first round of the ipi/nivo combo 9 days ago. We had to go back to the ER on Friday (1 week after the infusion) due to increasing shortness of breath; the doctors there did a CT scan and found that the lung lesions have grown even more since his last scan from the previous week (yeah ... my boyfriend's had at least one CT scan a week for the last month for various reasons).

I'm scared this means the immunotherapy isn't working. Should it have done something by now? Or is there still a chance it will kick in later? Does the cancer get worse before it gets better?

He's getting more and more sick. It's hard to watch. Two weeks ago we went for a nice long walk in a forest. Today he can't walk a block without being out of breath and nauseous.

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/19/2018 - 8:48am
Replies by: SOLE, Kav7438, Anonymous, casagrayson

Hi

i am 44 years old. I  very active mole checker and have been doing monthly checks for the last 2 years for my moles. I have dysplastic mole on my back which hasn't changed in the last 2 years but today I was going through my wedding photos and realised that the mole wasn't there in 2009 (age 35) at all. So I've developed this s mole between then and 2014 - it's on photos from then.

 

in that time I had 2 children. I physically was ill when I came across the photo this morning  and I can't look at my children without crying. I'm beside myself. I will try and get in with the dr tomorrow to get a referral. 

 

Anyone with a similar ecperience? This mole hasn't scabbed, itched or bled ever. But it's a good size

im just beside myself 

 

thanks for reading 

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Anonymous's picture
Anonymous
Replies 0

Hi

i am 44 years old. I  very active mole checker and have been doing monthly checks for the last 2 years for my moles. I have dysplastic mole on my back which hasn't changed in the last 2 years but today I was going through my wedding photos and realised that the mole wasn't there in 2009 (age 35) at all. So I've developed this s mole between then and 2014 - it's on photos from then.

 

in that time I had 2 children. I physically was ill when I came across the photo this morning  and I can't look at my children without crying. I'm beside myself. I will try and get in with the dr tomorrow to get a referral. 

 

Anyone with a similar ecperience? This mole hasn't scabbed, itched or bled ever. But it's a good size

im just beside myself 

 

thanks for reading 

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obtu.bt's picture
Replies 4
Last reply 4/17/2018 - 4:40am
Replies by: obtu.bt, Polymath, Bubbles

Hi Folks,
Does anybody experienced electrotherapy before for melanoma? Do you have any information about this treatment?

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justscared's picture
Replies 5
Last reply 4/16/2018 - 6:17pm
Replies by: justscared, Janner, Anonymous

Hi all. I’m back again...had a mole removed that came back as moderately atypical a few weeks ago. Been obsessively checking my skin ever since, convinced I’m going to end up with melanoma  

I’ve had an odd mark on the back of my leg since early last year. It’s faintly hard underneath, and almost a bruise color. I don’t know when it showed up, but mentally I want to link it to an incident where I swung my car door shut too fast before my leg was clear. The pointy bottom edge caught my leg and hurt like CRAZY...I think it actually scraped the skin through my jeans and bruised pretty badly. 

But my hypochondria is trying to turn it into something more. It hasn’t changed at all - the way it looks now is pretty much how I remember it always looking, since it showed up. It doesn’t itch, but it’s just a little bit tender when pushed. I’ve just never really had an injury to compare this to. Could it just be scar tissue? Or does this look more sinister?

I’ve freaked myself out so much that now I’m almost convinced that the door hit my leg in a different spot. I go Monday for a full skin check that was already scheduled after my biopsy. 

I even went and hadn’t my bf help to reenact the incident, and the door nails the spot dead on. 

http://tinypic.com/r/zx200n/9

http://tinypic.com/r/15pik3c/9

 

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Juanterrazas's picture
Replies 5
Last reply 4/15/2018 - 12:00am
Replies by: SABKLYN, Janner, kcmtnbiker

Hello everyone

A few months ago I developed what I thought was a bruise (I hit hard objects with my feet all the time), under my right foot thumb nail. It has been about 2 to 3 months or maybe even a little more, and the supposed bruise doesn’t go away. Apart from this, a small mole also developed in the sole of that same foot.

I have been to 4 dermatologists and all of them gave me different diagnoses. Two of them diagnosed it as an hematoma and a simple bening mole, one of them as a onychomicosis and a bening mole, and the last one (an older man who seemed to be the most knowledgeable and with the most expertise) advised me to get a biopsy as soon as possible because there is the possibility of a diagnosis of subungual melanoma, although he also agreed about the bening nature of the mole.

After taking lots of pictures, I selected these five which I believe represent the lesion with the clearest quality under different lighting conditions. I can see in the brightest picture some indication of strikes which would indicate melanoma, but in the other pictures the lines are not so apparent and it might be because of the brightness of the flash?

My biopsy is coming soon, and the lab results a few days later, but this situation made me feel really worried, especially the apparent strikes on the lesion.

A big hello and thank you to you all and any help will be greatly appreciated.

Link with pictures

https://drive.google.com/open?id=1dOO-Pv74vMwClVERa-eBsoeHkgzRpkYW

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/22/2018 - 4:59am
Replies by: ed williams, Atk4life, jetdoctor67, Joycem, Anonymous

Received my Castle Decision-Dx report.  I was diagnosed with superficial spreading melanoma, stage 1B, no sentinel lymph node biopsy done, depth of .93, Clark level IV.  Glad to see that the Castle report shows a sub-class of 1A, which is a low risk of reoccurrence within 5 years.   Although I know the report is fairly new, it helps to relieve some anxiety and I know that I must keep doing skin checks every three months.  Anyone else receive a Castle report?  

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MikeSp's picture
Replies 7
Last reply 4/12/2018 - 4:56pm
Replies by: Janner, MikeSp

Just got this Tuesday of this week. Will have wide excision within 30 days of biopsy as I saw a bit of data that odds go down 5% after 30 days, and my consult with my surgeon is this coming Monday. How am I looking experts in the group?  I think my only concern is that while I will be hyper prudent, (and vigilant going forward)  I'm not overly concerned. Also curious if anyone thinks I should have the Sentinel Lymph Node Biopsy. Thanks everyone, I am grateful to find this lace, even if we'd all rather not be here!

FINAL DIAGNOSIS:
Skin, right posterior shoulder, shave biopsy:
-- Invasive malignant melanoma, completely confined within
representative tissue planes examined. (See Diagnosis Comment).

MELANOMA CASE SUMMARY

Procedure, specimen site and laterality: Right posterior shoulder,
shave biopsy.
Type: Superficial spreading.
Maximum tumor thickness: 0.41 mm.
Ulceration: Not present.
Margins: Melanoma in situ is less than 1 mm from biopsy margin.
Mitotic index: < 1/mm^2.
Microsatellitosis: Not present.
Lymph-Vascular Invasion: Not present.
Perineural invasion: Not present.
Tumor-infiltrating lymphocytes: Non-brisk.
Associated nevus: Present.
Tumor regression: Not present.
pTN: pT1a. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/14/2018 - 11:11pm
Replies by: jrtufo, cancersnewnormal, guynamedbilly, Anonymous

Hi. Summer 2017 I was diagnosed with a Satage 1A Melanoma. It was pretty random. A tiny scab that wouldn't heal on my right calf. Very small but it came back Melanoma and a month ago another mole came back atypical. Now I have developed a hard immobile pea sized lump under my left ear up by the jawline. Do you tell your melanoma doctor about this or do you call your normal physician. And what are the chances it is even related? Kinda is ruining my day fussing about it. I don't like the "unknown" part of all of this. Like to me stage 1a should mean no worries go get checks but I find myself connecting all sort of weird dots. Is that normal or hypochondria?

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/12/2018 - 4:13pm
Replies by: Janner, Anonymous

Hi. Summer 2017 I was diagnosed with a Satage 1A Melanoma. It was pretty random. A tiny scab that wouldn't heal on my right calf. Very small but it came back Melanoma and a month ago another mole came back atypical. Now I have developed a hard immobile pea sized lump under my left ear up by the jawline. Do you tell your melanoma doctor about this or do you call your normal physician. And what are the chances it is even related? Kinda is ruining my day fussing about it. I don't like the "unknown" part of all of this. Like to me stage 1a should mean no worries go get checks but I find myself connecting all sort of weird dots. Is that normal or hypochondria?

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/12/2018 - 5:30pm
Replies by: Anonymous, Bubbles

Beginning new trial of Cobimetinib and Atezolizumab.   Anyone have any experience with this or know anything about it? 

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Raco's picture
Replies 7
Last reply 4/13/2018 - 9:03am

Ok call me Dumb but this BRAF thing is getting me.  

Which pathology report should tell me what is the makeup of my Melanoma ?   Who do I ask?
I have 3 reports from the following should it be listed on any report?
1. Dermatologist from the initial mole that sent it  to be biopsied?
2. Surgeon Oncologist who did initial surgery that removed tumor and two lymph nodes. Sent to be biopsy?
3. Surgeon Oncologist who did the second surgery to remove the rest of my lymph nodes Sent to be biopsy?
4. Oncologist who has started me on Opdivo?

I really really do not want to go through this, NONE of us should.
All this information is mind boggling.
I hate you Melanoma, you do not play fare be gone.

Sorry for my rant

Robbie

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Meet stage IV survivor and baseball hall of fame star Mike Schmidt. Meet others, find support and have fun.

www.safefromthesun.org

 

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tedtell1's picture
Replies 2
Last reply 4/12/2018 - 12:07pm
Replies by: tedtell1, Janner

Friends;

I have discovered a weird thing with my left pinky fingernail. Since I have an unknown primary...wondering if it could be subungual. I have a picture, but don't know how to post them, does anyone know how to post a picture? It probably isn't as it seems it would be unlikely for me to have subungual. It has no "black streak" but it is a streak that affects the whole nail, just doesn't have any color to it.

Thanks,

Ted

Ted

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Anonymous's picture
Replies 2
Last reply 4/12/2018 - 3:59pm
Replies by: Emma91, Anonymous

During Christmas of 2016 (15 months ago) I was 28 weeks pregnant with twins. I got a pimple that wouldn’t heel and bleed a lot. It would develop a scab then I would knock it and it would start bleeding again etc.

when I had my twins (feb 2017) it finally heeled and was always bright red. (I just thought it was a red scar.) fastward to about January 2018 (1 year on) it had started to grow out again. (Once again I am pregnant if that affects anything) I started knocking it because it was getting quite big and again it will bleed and bleed. Now it is the size of 5 mm in diameter and about 3-4 mm raised. When my dr shaved it off said it was extremely vascular, bleed a lot and needed to be burnt off for about 15 minutes. I have to wait a week for the results, being 28 weeks pregnant with 1 year old twins and a 2 year old I am really stressing. From what I have read I feel this is the only thing that fits my story and am concerned because I have had it sooooo long. 

 

Please all thoughts are welcome. I keep telling myself I am being silly and it will just be because I am pregnant with extra blood causing it to pop out. 

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