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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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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tedtell1's picture
Replies 5
Last reply 4/15/2018 - 8:35pm
Replies by: jjk17, gopher38, Hukill, doragsda

Greetings everyone;

Things have been going well recently, clear scans and generally the Nivo has been treating me okay. I am currently receiving the treatment every 2 weeks. I have been given the opportunity to start the once a month regimen. I know other people have started this....does anyone have any information/input on that? I know initially there were some negative reports. My doc has several patients doing it and none of them have had any problems. They have seen a small amount of inflamation in my right lung that causes a persistent cough and doc thinks it is probably from the Nivo, but it is manageable for now. I also have pain in my hips...but again it seems manageable. 

Like to hear from anyone who has experienced/read about the new regimen,

Thanks and keep trucking,

Ted

 

Ted

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MrG's picture
Replies 1
Last reply 4/11/2018 - 8:36pm
Replies by: Janner

Hello All,

I had a mole removed in March and the diagnosis was 'compund nevus with moderate dysplasia' and it noted the margins appear free of melanocytes.  With that said, I had a severe dysplastic mole removed a year ago and went back in for a wide margin removal of the site. The report notes that should the pigment persist or the lesion recur, more complete removal is recommended. Given my background, should I go ahead and insist on having another wide margin removal?  

Thanks for the advice!

 

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Anonymous's picture
Anonymous
Replies 12
Last reply 4/17/2018 - 3:47am
Replies by: Anonymous, bjeans, Janner, Nicole78

Hi Everyone, my name is Nicole , I’ve just been diagnosed with melanoma and that changed everything, I can’t sleep properly :( I have up and downs thinking that I have cancer and that is shocking :( The report from the shave biopsy show a Clark level 1 , Breslow thickens - N/A which is not sure what’s that... peripheral: 2mm, deep 0.5mm. I had the excision and waiting now for the biopsy . The doctor said that he took as much he can and I really hope that the biopsy will come up good. I have another one on my back which is just pyaplastic compund so I will remove that one as well. I’m sure there are people with worse case :( I never thought that I will ever be diagnosed with melanoma as my doctor always said that European people are unlikely to have it so it was a big shock for me the result :( I’m crying a lot , I have two kids and I’m thinking at the worst :( I have moments when I think , it’s ok ,it will be ok but then I’m thinking, it’s cancer , it’s there , anytime can come back , I’m suspicious of each mole on my body now :( it’s not easy...I feel sorry for everyone here having melanoma and I think we just have to hope that the science will discover a cure and we all be safe! 

Nicoleta Tufis

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Scooby123's picture
Replies 6
Last reply 4/17/2018 - 5:17pm

Hi Guys,

To all taking vitamins, I would like to know what vitamins you guys take and did you have to get the thumps up by your consultant before taking them. I never get a yes and no if ok and at moment on keydruda.

i am going through meanupause, thyroid issues and on keydruda.

vitamins I take are zinc, magnesium, garlic, b2, vitD,cod liver oil, Cq10, plus a gut bacteria tablet.

After taking zinc, magnesium, B2 my wee was bright yellow anyone on these have had same issue. If so is it normal,

Thanks guys

Scooby ❤️

 

 

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Steve D's picture
Replies 7
Last reply 4/19/2018 - 9:45pm

My wife is on a Opdivo/Yervoy treatment and has had cyber knife on her 5 brain mets. We are 8 weeks into treatment and the docs are starting to talk like its not workking. (for 6 months earlier she was on Tafilar and mekinst and responded well till we found the brain mets) Docs are talking about returning to TAF/MEK medication but my understanding is that it doesn't work well above the neck. Any ideas about how long this immunotherapy can take to work (12 weeks I've heard) and when to jump to something else?  

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