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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Replies by: Bubbles, AMcReader

Recent article from some of the top melanoma oncologist looking at relationship to Tumor size and overall survival in early Pembro (Pd-1 ) trial. This is an interesting starting point on research into Tumor size being used as an independent indicator in overall survival with stage 4 melanoma. http://clincancerres.aacrjournals.org/content/24/20/4960

 

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jmp_0513's picture
Replies 3
Last reply 1/24/2019 - 8:01am

Good afternoon!

My husband is currently in the OR undergoing a SLNB after a melanoma diagnosis. The melanoma was on his mid-back, and lymph node mapping radiology report showed lymphatic flow to both armpits. one side much more so than the other. The surgeon would like to take a biopsy from each armpit to cover her bases. We were told for melanomas in the middle of the trunk, this is very common. I'm just curious is anyone here has had sentinel nodes removed from more than one location? Could this lead to increased risk of cancer spread, since it could flow in multiple directions?

Thanks! 

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/25/2019 - 2:43pm
Replies by: Anonymous, cancersnewnormal

This is the same type of post that many many others have asked.  I just need some real advice or reassurance.   I had a small tiny mole 1mm x 1.5mm in size in front of my ear.   I think it was there 10 years ago by photos but not as dark as it has been in the past few years.   I decided to have it looked at.  It did not fit any of the ABCDE rules really except it was darker brown and did not seem to ever change in size.

I had a shave biopsy done and the dermatologist said she was 98% sure it was benign before the pathology report came below:

 

- ##################MICROSCOPIC INTERPRETATION##################
- Skin, left preauricular, shave:
- ?????- Atypical junctional melanocytic proliferation, extending to the lateral edge.
- Comment: Sections show a small but poorly nested junctional melanocytic proliferation with focal upward scatter into the epidermis in heavily sun-damaged skin. The findings are most consistent with early/evolving melanoma in situ.
-

I'm guessing the ????? is the diagnosis line and was lost in the fax but here are my questions:

She called me back on the results and said "You have a benign atypical nevus.... but there are some changes on slide 2 and you need a wider excision"

I was fine with that news-- so I went to a Mohs surgeon three weeks later and he sat down with me and bluntly said "Lets call this a Melanoma in Situ" then continued to refer to it as cancer.  Also stating that a stray cancer cell could have gotten out and to watch for signs of metastesizing.  Although rare he said it does happen.  I continued to ask him about the pathology report from the original biopsy and said that it was leaning more towards a melanoma so that would be his thought.

So I went through the 5mm procedure and have a nice 2" scar down my left ear but they said "All margins are clear"

So what does this mean to me?   Do you think I actually had melanoma or was this just an atypical nevus that may or may not have become one?   The stray cell the Dr. talked about seems almost impossible based on my research of both atypical and melanoma in situ.   Thoughts?

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maestral's picture
Replies 1
Last reply 1/23/2019 - 2:44pm
Replies by: WithinMySkin

Hello everyone,

I've not been diagnosed with melanoma so I deeply apologize if I missed the forum and took the time and space from people who needed help and advice much more than me. The reason I post here is because I find out people on this forum have much more knowledge about this topic than people on general health forums. Recently, I found a mole which had all of the ABCD signs of melanoma (about E I was not sure since I hadn't checked it monthly - I know, I was stupid). It was highly assymetrical, had multiple colors (at least 3 with dark brown or maybe even black spots) with an uneven borders and had diameter of slightly more than 6 mm. I showed it to dermatologist and he told me that the mole was suspicious, possibly even early melanoma so he performed complete excision and sent it to pathology lab. Few days ago the pathology report came back as: NAEVUS NAEVOCELLULARIS COMPOSITUS. I live in a non-english speaking country so it's hard for me to translate medical terms but in description it says something like: "Melanocytes mature in a proper manner...". I asked my dermatologist about the report and he said that a mole was completely benign and that's it's not an atypical mole in the end. This left me confused and longing for answers. So I have two questions.

1. If the mole was clinically atypical but pathology showed that it's not, does that still count as an atypical mole due to the way it looks? I read that the people with atypical moles are at much higher risk for melanoma than general population so I try to assess my risk especially since I live on the sunny mediterranean coast and I spent a lot of time in the sun. My friend was recently diagnosed with melanoma so I decided to be much more vigilant about my skin from now on. 

2. How common it is that a mole which shows ABCD sings is completely common mole without sings of atypia like in my case? Is it something which happens frequently or something which is quite rare? Because when you browse the google regarding this topic it appears that each ABCD mole is either a melanoma or atypical mole... this topic seems to be really fuzzy

Thank you for your answers and I apologize once more for taking your time and for grammar mistakes I made

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Ness7432's picture
Replies 14
Last reply 1/28/2019 - 3:28am

Hello,

I have been researching the internet for months now, and feel maybe it is time to post my dad's story. My dad is 62, and I don't recall him ever taking Advil nevermind going to see a doctor. He started acting very strange in the beginning of August this past summer. Forgetting things, distant, strange mood...just not himself at all. I had a bad feeling and told my mom to take him to the emergency room when it got worse the second week. Long story short, we found out that night he has tumors in his lungs and his brain. A few biopsies later, he has stage IV metatastic melanoma with the BRAF mutation. Our world has gone completely upside down. My father is the rock in my family, and one of the best men in this world.

When they found it on August 11th, he had 2 tumors in his lungs and 6 in his brain, but they never found the site the melanoma began. I found out after the fact that my uncles and grandfather on my dad's side have had early stages of melanoma that were caught and treated. The first plan of action was a craniotomy early September and removed 4 large tumors, leaving two of the smaller ones. He recovered from surgery well, but had a set back with pneumonia that put him in the ICU for 12 days. It was there they discovered a blood clot in his leg, and then the blood thinners depicted bleeding ulcers so they had to put in a filter for the blood clot and cease the blood thinners. He is on steroids, anti-seizure medications, antibiotics...more pills that I have ever seen my dad even look at.

They did another MRI while he was in the hospital and discovered just one month after surgery he now had inumerable tumor growth all over his brain. This was October 6th. He started on the Mekinist and Tafinlar combo, which started to work well. The MRI in December showed the disease as stable and the tumors as stable or smaller. Two of them had grown a little, but some had shrunk or disappeared. He gained weight and strength back and we were very hopeful.  The combo of targeted therapy shrunk the tumors in his lungs considerably.  We were really looking forward to the January MRI. However, I could tell it was not going to be good based on how his eyes changed again and he is starting to go backwards with his cognitive/mental status and behaviors. We got the news last week that this MRI showed many more new tumors growing in every area. the final result was progression of disease. The medications are not working in his brain. He had to stop taking them, and we start whole brain radiation today for 10 days. After that, there might be a chance of taking the combo Ipilimumab and Nivolumab but his oncologist says those are very dangerous and have a 1 in 10 chance of taking his life before the cancer does.

At this point, having so many tumors in his brain groing agressively, I am not sure how much time he has left. Doctors seem to be amazed he is still with us as it is, and i have heard terms such as 2 to 3 weeks if we don't do the radiation. I know no one can tell me how much time we have, but for some reason I feel it is important to try and find out. Except all I can do is treasure every day that we do have.

If anyone has any insight, advice, words...I think I just needed to type it all out and try to focus.  Thank you for listening.

 

 

 

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Anonymous's picture
Replies 5
Last reply 1/23/2019 - 10:41am

Hi there,

I'm new here but found this forum based off a google search.  I just had a mole biopsied that had definetely changed, it used to look like a very small circle and now (to me) looks like a dysplastic atypical mole about the size (maybe a little smaller) of a pencil eraser.  I'm so mad at myself because looking back at pictures it appears the mole had actually changed at least 2 years ago.  I'm so worried waiting for this biopsy that if it is something I totally dropped the ball on this.  

Just curious if anyone had a changed mole, or waited as long as I did to notice, and have it be harmless?  The waiting for my results is driving me to insanity. 

Much appreciated!!

-Katie

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Zelda_Scotland's picture
Replies 7
Last reply 1/23/2019 - 5:57pm

Has anyone else been told they need to adjust their sex lives while on Nivolumab? 

I had my first infusion yesterday and was given a leaflet which said we had to use condoms for the next year of my treatment, plus for 6 months afterwards incase I pass any of the drug into my husband’s system. It was designed with Chemo patients in mind though and the nurse couldn’t really explain if it applied to me too. 

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marta010's picture
Replies 20
Last reply 1/26/2019 - 11:34am

After almost 7 years of treatment, my husband, Larry, finally has scans with no evidence of metastatic disease in his body or brain!!  He just finished his 14th Keytruda infusion and his doctor said if he maintains his NED status he can stop after another 12 months.  I never thought we would see this day!  He's had just about every available treatment since his diagnosis in March 2012 - Zelboraf, radiation, 5 brain gamma knife treatments, 3 craniotomies, dabrafanib, 2nd attempt at Keytruda, 9 months on a feeding tube, partial vision loss and numerous hospitlizations from treatment related side effects.  He is truly a miracle.  We are so grateful and hope his story will bring hope to others. NEVER GIVE UP.

Take care and enjoy every day!

Ann

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smiller's picture
Replies 6
Last reply 1/29/2019 - 10:41am

 My husband's last treatment (opdivo,yervoy) was in June of 2017.  His back started hurting around the first of January.  His scan on January 04, 2019 showed no evidence of disease.  His back has steadily gotten worse.  Could this be a side effect of the treatment, even though it's been eighteen months since his last one?

Thanks for any comments!

Jim's wife 

 

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Red Dragon's picture
Replies 2
Last reply 1/22/2019 - 10:33am
Replies by: neilarama2017, MarkR

My Mom was diagnosed. She found the tumor on her leg, it was found in nearby lymph node, but none was found in the neighboring nodes. So tumor removed lymph nodes tested, she started taking Opdivo, for like 11 months the side effects got so bad her oncologist said to stop.

 

The side effects are rough, lymph node removal lead to lymph edema in her leg, constantly nauseous, and too week to enjoy the grandkids. So she took prednisone to alleviate the side effects, but has a blown pituitary, low grade guillian-barre.

how long does this last? 

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MikeInAK's picture
Replies 11
Last reply 1/23/2019 - 11:47pm

Just a little nervous, hope it goes OK.  My first session is in an hour. 

Newly, registered here, such a good resource.  Been lurking since I was diagonsed in November with a fast appearing lesion that turned out to have a 9.0mm ulcerated tumor Staged pT4bNXMX with a 10 mitotic count.  This led to PET/CT scans, additional SLND surgery, where 3 more met tumors found excised, one 9mm in right axilla LN, another 1mm in right axilla, and a 1mm one in my left axilla.  Nodal staging for this metastisis was staged as pN2a. 

I am probably like most others, a bit in shock about being diagonosed and then suffering from relazation that this is a long path, with unknown outcomes.    It has already caused life changing events in my life, and trying to deal with it.   Will report back, so others maybe benefit from how it goes for me.  

Peace

 

 

Stage 3C - Oct. 2018 9mm ulcerated nodular tumor primary on back discovered; Dec. 2018 WLE and SLNB (3 mets right and left axiila L 9mm, 2mm and 1mm); start Opdivo immunatherapy January 2019. 

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Amanda R's picture
Replies 4
Last reply 1/24/2019 - 5:58pm
Replies by: Amanda R, BrianP, sing123

Hi, does anyone have any recommendations for the mdanderson skin clinic? Does anyone know who is the best specialist derm there as far as pigmented skin lesions who could possibly give me a secnd opinion and re-evaluate my biosied spot? Thank you for any input. 

Amanda

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Nympha's picture
Replies 2
Last reply 1/21/2019 - 2:14am
Replies by: Nympha, BillB

Hello everybody,

My much beloved father (67) was diagnosed with III C stage of nodular melanoma, with ulceration ( breslow 2,2mm) and mets in two lymph nodes 9 months ago. Doctor said his future is very short, prognoses said 3-6 months.. After 9 months our hero is still here with us, fighting with painful metastases in skin every day. He has about two big purple balls on his skin full of white mass inside, and two small. He has just got 4 keytruda infusion and something very weird just happened.. His blood marker S100 was increasing every month from 300 to 1500, and now, after 4 th keytruda.. There was no marker in his blood.. Is that possible?

Does it mean keytruda is working?

His skin lesions are softer.. Doctor doesn't say anything now.. Just that nothing is lost.. And that father can fight that, because after 9 months, he still does not have mets in organs..

Thank you all, that you are here, prepared to help and share your stories, experience with your fight and way.

Veronika

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susanmcd's picture
Replies 4
Last reply 1/21/2019 - 7:22pm

Friends, I am hoping someone can share with me a good link or article that helps explains the Suv levels on a pet scan. Thanks

Susan Kennedy

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