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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almostalice's picture
Replies 7
Last reply 5/10/2018 - 7:25pm

Hey guys, I'm new but not new to the subject. Was diagnosed 2004, two primaries one was Nodular 6mm Stage 2C (T4b to be exact). Another primary found as in-situ SSM but not dysplastic 2011.

I'm from the UK and moved to USA. This'll be my first exploration in America for treatment.

I have watched an atypical progress behind my knee into what I think could be in-situ SSM but it already has the starting apperance of the nodular I have survived at least in part.

I called up a preffered derm however was given a 3 month wait as a new paitent. This will if positive by my 4th primary and my question really is should I wait the 3 months and take photos as evidence of evolution OR just get into any clinic regardless?

I'm not at all panicked and am numb to it which could be a bad thing or a good thing to get me through the wait. Any thoughts given the history?

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guynamedbilly's picture
Replies 1
Last reply 5/10/2018 - 5:30pm
Replies by: Julie in SoCal

I said I'd post again after I got the recommendation from the tumor board. So, here's my brief treatment history. I originally had a thick tumor on the back of my scalp. It was removed in July 2017. I've been on Nivo ever since, every two weeks. I had a recurrence on the back of my scalp, near the original site, that started in December 2017, but it was so minor and did not show up on scans, so we thought it could have been a bad pimple. It disappeared and I felt it again in mid February. The first punch biopsy was negative, but the bump remained, so nearly four weeks later a second punch biopsy, twice as deep as the first was positive. So I had a second surgery in early April. The tumor was a very slow grower and didn't show any uptake on the PET scan. 1.2cm diameter, fully resectable, nothing in the margins, no sign of it anywhere else.

The tumor board reviewed my case both times, and they've recommended continuing with my regular Nivo treatment schedule, ending in August.

I'm still feeling pretty positive about my chances at this point.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/10/2018 - 11:40am
Replies by: Anonymous

So i have a lot of moles on my body all flat normal light brown or skin colour..i had a very small mole on my stomach it was flat and light brown..i noticed yesterday it turned black with a reddish brown tint around the edges and grow bigger..i went to the doctors and im waiting on an app for a specialist..i used to be a big sunbed user.
Can anyone relate or help me understand is this melanoma cancer?

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Anonymous's picture
Anonymous
Replies 15
Last reply 5/10/2018 - 5:50am
Replies by: lamurphy1968, almostalice, bjeans, Anonymous, marta010, SABKLYN

Hello,
I have an appt with derm this Wednesday, May 9th, to have him look at a mole on my face, close to my ear. I can't see it very good but it's raised, scaly and itches. It's not dark that I can tell but the scaly top is covering it. I decided to look at some other moles and found one that is freaking me out. I'm going to post a link to a pic oof it, .
below for anyone who wants to look at it and give advise and/or opinions. I know that y'all can't diagnose this.
Thank You!

 https://imgur.com/gallery/UwsuU9v

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/9/2018 - 10:05pm
Replies by: SABKLYN

I just noticed about a week ago that I have a small black spot under one of my toenails.

https://imgur.com/a/DoUJPwl

I know that no one on here is a doctor but I don't want to go to the doctors for something foolish . Should I wait and see if it grows out or go to the doctor now ?

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/9/2018 - 9:22pm
Replies by: guynamedbilly, dessie, Anonymous, ed williams

I was recently diagnosed with stage 3A melanoma, after a SLNB I was found to have “isolated cells” in one of the eleven nodes that were removed. I was given the options for immunotherapy with Opdivo or observation with aPET/CT and MRI Brain in 6 months. My oncologist suggested observation in his opinion but I am struggling with making this decision. I am 27 and want the best possible outcome long term. Are there any other 3A patients with stories they can share regarding their decisions and treatments. Thank you. 

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MattS's picture
Replies 2
Last reply 5/9/2018 - 9:16pm
Replies by: MattS, cancersnewnormal

I have had a bunch of moles biopsied, probably 20 or so and more than half have been atypical (mostly mild and 4 moderate). I notice that I read alot that most dermatologists want to fully excise pigment regrowth in biopsies that came back mildly atypical. When I asked my dermatologist about that he said, "Ok, so with your scars look for pigment regrowth that is outside the scar area, much darker, itchy, that kind of thing...if the pigment regrowth is generally light and within the scar like yours are, you should be ok." But in reality, should I being asking him to take it out? It seems like I read on here that everyone says it should be taken out...

Also, one more question. When I had asked my doc about all the changes I should be looking for in my moles and red flags and all that, I later went in because I had a mole that got a little darker but only on part of the mole. We biopsied it and it just came back as a normal mole. He told me that change doesn't always mean bad. My question (that I thought of after the fact, and will ask when I go for my yearly in a few weeks, but am curious now), is that I understand that change doesn't always mean bad, but does that also apply to moles that clearly are atypical on your skin? Like, lets pretend you have an atypical mole and are watching it - is it possible for those to change but not in a bad/progression way?

Thanks everyone for your thoughts.

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Coach2u's picture
Replies 22
Last reply 5/9/2018 - 8:43pm

13 years ago I had a melanoma removed from my leg, 3 years ago a lump on my leg turned out to be metastatic melanoma.  I had been getting CT scans every 4 months and they were clear. In February I found another lump also melanoma and after surgery started Keydruda.  After 4 treatments it has not worked and now there is a spot on my spine and two tumors in my liver.  The plan is Opdivo and Yervoy as I am BRAF negative. Just got this news today and really scared, anyone have any success with this treatment? Had a vacation planned out of country bit not sure should go. Then I think I will never feel this good again but afraid of side effects.  

 

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VinceMart's picture
Replies 11
Last reply 5/9/2018 - 6:54pm

I am a 46 year old male diagnosed with Stage 4 at least 3 liver mets, and 1 lung met.  After failing 3 months of Pembro I started Taf/Mek in April.  After 7 days on combo, severe side effects including, rash over 50 percent of body, pain in joints, back pain, cough, headache, fevers, chills, severe shaking, pain in soles of feet, Dr. held meds for 5 days.  Started again with am dose and 4 hours later all side effects were back 10 times worse than the first time.  Went to ER that night for dehydration.  Now on steriod and antibiotic for possible lung infection.  Meds being held again until Dr. appt next week.  Anyone else experience this severity on Taf/Mek?  I was on interferon for a year in 2014 and did not have anything like this.  Worried to give this a try again.

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Anonymous's picture
Replies 1
Last reply 5/9/2018 - 6:53pm
Replies by: A79

Hi,

I'm obviously new to this board and I apologize if this is the wrong place to post. 

I just discovered a strange looking mole earlier this week and I have an appointment with my dermatologist tomorrow.  I was hoping someone might be give me an opinion about whether this looks like a melanoma.

All three photos are of the same mole, which is about 1/3" in diameter.  It started out flat (and all brown) years ago, but I just noticed that it is now raised (lumpy, not smooth) and is red along with brown.

Would really appreciate any input; I am pretty nervous.  Here is the link to the photos:

https://www.flickr.com/photos/39493375@N02/

Thank you.

 

 


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almostalice's picture
Replies 5
Last reply 5/9/2018 - 6:37pm

I re-read my medical notes from decade ago Meladrama and was reminded that I turned down genetic risk testing even with 6mm nodular ulcerated.

The onc.consultant was very honest in saying "hey you've had three primaries, there's your answer". The question was really did I want to undergo genetic testing for the benefit of other people.

Did anyone else get genetically tested on CDKN2A or BRAF aside from involvement with medication?

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Coragirl's picture
Replies 13
Last reply 5/9/2018 - 6:22pm

This morning my family attended the AIM walk in Dallas, my husband received the bad news of stage 4 on Tuesday. We have never gone to a walk before and thought now was a good time to start. I don't think I was ready and I am not sure it was great for my husband or my daughter, we heard some heartbreaking stories. I feel terrified that this is it, this is the beginning of treatments and illness and then saying goodbye to the love of my life. How do I do this? How do I support everyone? I am seeing a therapist next week and making sure the kids will too. I think I just need to hear some positive stories would anyone be willing to share some good news? I am aware i sound desperate, because I am. 

Amie Taylor

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/9/2018 - 2:50pm

I was at a conference recently where one patient was refereed to as NED and one was in "remission" the doctor was very careful to make the distinction -- whats the difference in terminology?

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ariana.bennett's picture
Replies 1
Last reply 5/9/2018 - 12:02pm
Replies by: Julie in SoCal

I went to the dermatologist today for a peeling black mole. He looked at it with the dermascope and said it was thick, dark, and irregular so he wanted to remove it. 

 

What does he mean by thick? The mole was literally flat on my skin. Does he mean thick like in depth? I'm so scared that it's nodular melanoma if it's thick downwards.

 

Someone please help.

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tedtell1's picture
Replies 16
Last reply 5/9/2018 - 10:08am

I crashed this week, 

This past Monday I tried doing the double dose to go to once a month. Within a few hours my usual side effects, extreme weakness and fatigue and body aches came on BUT much worse! I ended up almost fainting in Church on Sunday and had to stay overnight for an IV. I know everyone is different, but have decided it's back to every two weeks for me. Don't think my body can take another one of those without another crash and burn if I don't have to! Good news, no indications that any of this has anything to do with the best coming back, still NED as far as I know.

Ted

Ted

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