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 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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dbJoe's picture
Replies 7
Last reply 5/9/2018 - 9:50am

Hey folks.

First off, let me say this board is tremendous. My doctors (not my surgeon), my wife, and friends seem to think I am knowledgeable regarding my disease, but the regulars here make me feel as if I'm in high school. Back when those in high school didn't have all the answers.

My older brother was diagnosed 2010 MUP. Mets to lung and gut. He was unable to tolerate Ipi after his second(!) HD IL-2, and sadly passed in 2013. In my ignorance I didn't pay enough attention.

I was diagnosed in January 2015, MUP. Mets in left supraclavicular and axillary nodes, which were removed in February. BRAF-. April through June I did Ipi, 4 infusions 3mg/kg every 3 weeks. Moderate AE's, mainly elevated ALT and rash. No tumor burden to observe.

All subsequent scans have been negative (positive for me!) except for one or two sub-centimeter pulmonary nodules that were of the 'now you see um, now you don't' variety. Hunky dory, right?

Now I read that OS and PFS stats are twice as high for those that caught the next train (PD-1, my plan 'B') ahead of Ipi. I've also learned I'm approaching the 3-year 'end of the tail' for ORR. I believe I am more anxious at this stage than I've been at any other. I know I should be shouting out I'm 'cancer free', but between you and me, I no longer make purchases based on length of warranty.

So, is there anybody out there with these circumstances? I got 3, Naturally I'm looking for a pen pal going on 20..

Thanx for being here, everyone.

Joe

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/9/2018 - 12:44am
Replies by: NoKings, almostalice, Anonymous, Julie in SoCal

Hello.

I've had this same looking mole on my stomach for about 12 years. It has never changed in size, shape, or color. It doesn't cause any problems as far as itching or bleeding. It's just become a part of me and I hardly have noticed it throughout the years...until just recently.

I had read an article about a woman who was diagnosed with melanoma and it kept returning. I admit, I'm a bit of a hypochondriac, and I am one of those people that looks online whenever I think something may be wrong with me. When I was looking up symptoms of melanoma, I came across pictures that look pretty similar to the mole on my stomach. I followed the ABCDE rules. This mole is assymetrical, has irregular borders, is darker brown in the center and lighter brown around it. 

Upon further research, I also came across dysplastic nevus or atypical moles. I'm sure you're all familiar with those types of moles and how similar they look to melanoma. They share a lot of the same characteristics which makes it hard to differentiate the two.

I'm honestly freaking out. I made an appointment with a local derm this coming Tuesday. I feel like he will either say I have nothing to worry about or that I need this removed ASAP.

As far as personal info about me, I'm a 27-year-old white female. I have dark hair, light eyes. I have spent time in the sun, mostly when I was younger. I've had a sunburn or two growing up. In my adult life, I've been more vigilant when it comes to sun protection. I have no other moles on my body that look like the one on my stomach.

As far as my upcoming derm appointment, does anyone know if I will have to have a biopsy? Or will he be able to visually tell if this mole is something to be concerned about? I'm not looking for any medical advice or diagnosis over the internet, just information if anyone has it. Thank you to anyone who decides to respond to this.

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NatSR's picture
Replies 3
Last reply 5/8/2018 - 9:26pm

Hi,

I was wondering if anyone can offer me information or experience, I was diagnosed with stage 1a melanoma on my back in July 2012, which I had surgery for and no other treatment which I was very thankful for that it was caught very early on, I have now noticed 2 swollen lymph nodes in my neck, they are not huge but I can feel they are swollen, has anyone had a reoccurance or spreading of Melanoma stage 1a?

 

Thanks for reading x

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