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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Anonymous's picture
Anonymous
Replies 2
Last reply 4/15/2018 - 9:50am
Replies by: Anonymous, jetdoctor67

Hm. Got a letter from my insurer saying the denial of claim was reversed on appeal. I was aware Castle Biosciences was appealing, but did not expect they would succeed. (Castle was not going to collect from me anyway.) 

”Upon review of the documentation submitted, the request is approved. The DecisionDx-Melanoma signature indeed may be an independent predictor of metastasis risk to assess and design individual preventative measures of metastases for patients such as this patient. The reviewer that made this decision is a Board Certified Medical Doctor in Dermatology. The reimbursement associated with this approval has been processed and you will receive a corrected explanation of benefits.”

(Happily no metastatic occurrence almost 2 years post diagnosis but keeping an eye on things..) 

Thanks to all who share here, and best wishes (and prayers) especially to those fighting active active disease.

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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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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 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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Julie in SoCal's picture
Replies 14
Last reply 4/14/2018 - 5:24pm

Greetings Melahomies!

Just got my scan report and everything is "normal" and my brain is unremarkable!  I love it and sure don't take it for granted!  It has been one heck of a year, so taking a long stop in NERD-land is very welcomed.

I'm also recovering from total knee replacement surgery.  Just let me say WOW!  I am so glad I did this! My surgery knee feels better now after surgery than it did before surgery.  Yea, I was in a lot of pain.  So I'm sitting in my "ugly chair" with my ice on my knee (ice is my best friend right now)  half deciding if I want to get up and take a walk.  I think I'll sit here for a little while longer...

Anyway, just wanted to share the good news.

Fight on friends!

Peace!

Julie

 

 

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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CHD's picture
Replies 10
Last reply 4/14/2018 - 3:27pm

I can't find the post, but I could have sworn I read earlier someone said a specialist/doc told them there are no long-term survivors of mucosal melanoma?  Does anyone have more information on this?  Been told the same thing?  Studies?  Been told the opposite?  Known someone who is a long-term survivor?

Not sure how long-term survivor is defined.  I am 3 years out from my diagnosis of vulvar melanoma with radical vulvectomy.  Stage I-II with regression but no lymph node involvement.  Later diagnosis of vulvar MIS, three surgeries total, but last PET scan in August clear.

I had not heard that there are no survivors long-term.  Does anyone have more info on this? Long-term meaning how long?  I know this is going to nag at me until I figure it out!  Have tried researching it for myself but no luck.  Am not scheduled to see my specialist until August, so long time to wait for answers. :)

Thanks in advance.  I will happily accept personal stories. :)  Ugh, this disease just keeps me in limbo sometimes.  If this is what the specialists are saying, I want to know that, too.  But definitely curious how "long-term" is being defined here.  My understanding was that mucosal melanoma survival was similar to cutaneous in that depth, ulceration, mitosis rate, etc., all had an impact.  But I don't recall ever discussing exactly what "long-term" survival for us actually meant!

I realize not a lot of us here on the forum, but any insight appreciated.

Cheri

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Anonymous's picture
Anonymous
Replies 10
Last reply 4/13/2018 - 9:54am

Hi, my husband is currently getting nivo treatments for stage IV. 

We have asked his Dr. if he should stay away from alcohol and have never really gotten an answer.  We are not big drinkers by any means but would like to know one way or the other if this is an issue.  A few months ago he had four beers at our daughters wedding.  He told his Dr. and he just said "oh, that's fine, special occasion".  That comment sounds like it's something he shouldn't do on a regular basis.  It seems to me, when fighting cancer you would want to stay as healthy as possible, so why risk doing anything unhealthy.  On the other hand, his Dr has never said anything about any restrictions, or about nutrition either for that matter.  I understand some things are common sense but I think if eating a healthy diet for example was essential to recovery, someone would of mentioned it to him. 

I'm just wondering others opinion on both drinking and eating healthy, for someone with cancer, as opposed to someone whithout. 

Thank you!

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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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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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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 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
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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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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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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tolnaiba's picture
Replies 1
Last reply 4/11/2018 - 8:54pm
Replies by: kcmtnbiker

Hi everyone!

 

At first, english isn't my native language, but I hope I will be understandable.

I'm a 30yo male, and I have a big hairy birthmark on my back (Tierfell naevus), and early february I had some stinging feelings on it, but not everytime on the mole, some times elsewhere on my back but on the same side, where the birthmark is. I got panicked and I have immediately self checked and called a dermatologist for an appointment. 2 weeks later, the doctor said it's all right, she can't see any bad things on it, but she recommend to remove it, because a big birthmark is a high risk factor.

I said OK, but the other day I visited another dermatologist too. She is a dermato onkologist, and she said the same. It's OK, but I have to remove it becouse prevention. And she said "when it's painful, it's not cancer" or something like that. That was on 21st February, the surgery will be on next monday 9th April, but the stingig feeling doesn't leave since. Some days where better in March, but it came back. It's not so painful, just scary for me and usually happens when I move and just a few times a day.

I have checked the symptoms of nodula melanoma, and there is "sting, itch or bleed". But nodular melanoma grows rapidly, and from early February, my mole doesn't changed (I have photos from Febr), and late Febr the doctors saind it's OK.

I don't know how to feel about this. Has anyone similar "stinging feelings" without any other symptoms?

I hope the biopsy will say the same as the doctors. Thankfully my mole is not so huge, so it can be removed with only 1 surgery.

 

Thank you for read this. If you have any advise please answer.

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