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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Sjack's picture
Replies 2
Last reply 2/4/2018 - 2:26pm
Replies by: cavsnut, CindyJ

Hello, 

I had a malanoma (mole) in my calf, tumor site operated on January 8th, and they did do a sentinal lymph node biopsy (groin) which turned out positive for cancer cells, and so we go from there. I am told the margin was clear.  Then LDH blood test, and the results are "normal".  Also, the mitotic rate was "normal". 

PET scan on Monday Jan. 29th, results on Thursday Feb. 1st. 

PET scan looked good - that is, no problems, nothing lit up. One or two tiny little spots on the lungs, but nothing he was concerned about - no biopsy or anything recommended for the time being. Lymph node was “micrometastatic", and size/depth do not make him want to go in for a CLND (complete lymph node dissection (removal) at groin). Five years ago they would have done it as a matter of routine, but as I wrote about before, they do not see any real improvement in outcome so nothing for now. I’m really happy about that, because a lot of what I’ve read indicates that Lymph node nonsense is almost worse than cancer itself. Well, sort of. So, I’m staged at 3A. So the choice of action is CLND vs Surveillance. We’re feeling certain that surveillance is the right path. This means 1) skin checks with dermatologist every three months, 2) Ultrasound of left groin every 3 months for 1 year to check for node changes, then every 4 months for year 2, then every 6 months for year 3, and 3) CT Scan every 6 months going forward. Of course IF anything pops up along the way, the scheme will change accordingly. He said he thought for someone in my situation there’s a 70% chance that nothing else will come up. Well, and I crazy or is this GREAT news? Yes, every test will have me sweating bullets a bit I suppose, but I'll take this as a good day.  So, for today at least, there's only one thing we say to death, "NOT TODAY!!!!"

Am I just being overly optomistic? Or did everybody start off this way?

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Maureen038's picture
Replies 8
Last reply 2/8/2018 - 4:28pm

My husband, Bill just had scans and thankfully there was nothing new!! We had such a scare last spring when there was something new in his liver but it wasn’t cancer. Bill is taking a month off his breast cancer drug ( he has the her-2 mutation) because his liver enzymes are very high. He’s been stage 4 for five and a half years. 

I read this board often to get the latest and greatest from Celeste, Ed and Brian P. I hope all is well with you Brian.

My prayers are with all warriors and their families!!❤️

Maureen

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/2/2018 - 2:49pm
Replies by: Janner

During a recent checkup, my dermatoligist found a very small (tip of a fine point Sharpie) mole on my upper abdomen, an area that does not see much sun, she did not like.  It was removed two weeks later and the lab results are as follows.  

"This is a bisected shave specimen showing ested atypical melanocytes along the dermal epidermal junction and within the papillary dermis.  There is associated papillary dermal chronic fibrosis with reactive vessels and chronic inflamation.  The degree of inflammation suggests regression/halo reaction.

Immonoperoxidase staining with MiTF does not show basal layer confluece or upward migration.  Dual staining with Ki-67 amd Mart-1 does not show an increased proliferative index in the dermal component.

This is a compound nevus with sever atypia.  The margins appear free of tumor in the planes of section.  Nonetheless, a wider excision with at least 3 to 5 mm margins is recommended."

I have dozens of other moles on my body.  Some have been removed in the past with no mention of such negative lab results.  Is the the recommendation to remove an additional, wider section the best course of action?

Thanks!

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welcome32's picture
Replies 3
Last reply 2/5/2018 - 9:40am

I am worried sick about my 24 year old Daughter, who is Stage 3.  She was diagnosed over a year ago.  She has had clear scans, ultrasounds, and seen dermatologist every couple of months.  She is not under treatment but, going with the watch and wait.  All of a sudden she told me that she had a spot under her toenail and noticed it several months ago and didnt think much of it.  She took off nail polish and now it is still there.  we are contacting her doctors etc....but I have to say I am scared out of my mind.....

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thinkingofu's picture
Replies 4
Last reply 2/3/2018 - 5:10pm

Hello everyone xxx

For those who do not remember, my mum is battling stage IV melanoma with mets in brain and lungs

So far, she has had 3 Yervoy+Opdivo ivs, 10 sessions of SRS and have been taking steroids and Warfarin injections to battle embolism she developed a few weeks ago.

She has not been very well. She has become aggressive with us and at times acts very out of character. When she lost consciousness a couple of days ago, doctor did a CT scan which showed she developed two tiny metas in her brain. 8 months following the beginning of the treatment. 

My question is this: is there still hope? Can immunotheraphy still work down the line even if tiny new metas appeared 8 months later? Have any of you had similar experience and now in remission?

Thank you and love to all of you xxx

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/2/2018 - 8:17pm
Replies by: jennunicorn, sister of patient, Anonymous

Hi, I recently had a mole on my labia (L) shaved off and it has come back as melanoma in situ but apparently they didn't get it all and I now have to go back for a wider excision. I am unable to get into a surgeon for several weeks and I am concerned that as they didn't get it all, the cells remaining can spread. I am new to all of this so thought I would ask if this is true and whether I need to be pushing harder for an urgent appointment? 

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/2/2018 - 10:44am
Replies by: Brent Morris, Anonymous

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sjsparks's picture
Replies 6
Last reply 2/1/2018 - 5:00pm
Replies by: sjsparks, Janner

Hi newbie here!
I am 36, I was diagnosed in October 2016 with Stage 2 aggressive triple positive breast cancer.  I had 100% response to chemo. I did not need radiation.  I had a bilateral mastectomy and DIEP flap recon. Fast forward to 1/31/2018 I got a call from my dermatologist that my scratch biopsy came back High-Density Intraepidermal melanocytic proliferation with severe atypia.  With my past and cancer, I am extremely anxious with this news.  I'd like to chat and get advice and opinions on what to expect.

Thanks so much, Shannon.
 

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SOLE's picture
Replies 1
Last reply 2/2/2018 - 8:10pm
Replies by: jennunicorn

(in response to my fellow canadian Ed from Jennunicorn’s super NED post a week ago and to all of you too)

I am trying to hold on the best I can. About 18 months out of diagnosis, scanxiety has returned with a vangnce as I am due for PET/CT soon. Last groin ultrasound was all clear in December. Managed to also have an abdomen ultrasound done with another doc and all seemed ok.

I was in touch with a patient coordinator from BMS lately and she told me that Opdivo as adjuvant in Canada would probably be accepted by end of 2018 which leaves the provinces to negociate after. Basically another 12 to 18 months wait... Am seriously thinking of buying a few shots directly from BMS if I’m still clear.

I also pursued my investigation on my case of « rare isolated cells » in one lymph node and send my blocks and slides to the UK and then Amsterdam where Dr van Akkoii is studying and gathering information on this peculiar situation through his clinical trial. First, and to my utter disbelief, the company in the UK (oncologica) could not find any cancer in my lymph nodes!!! I wanted them to test my PD-L1 expression and they couldn’t find any cells!!! Then Dr van Akkoii came back with ... the same conclusion!!!! Dear Lord!! Funky staining in between the lymphocytes, all cells, cytoplasm, nuclei and morphology appear normal to him! So I might be ... stage 2b! This is better than stage 3b but not out of the woods. I will send my stuff again for a last revision to a very top pathologist and make peace with the « incompetence » we sometimes face along this gruesome journey.

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Rita and Charles's picture
Replies 8
Last reply 2/2/2018 - 12:31am

I haven't been on the page much, my heart couldn't handle seeing the struggles, the defeats but sadly the successes too.  All too much.  One year ago, my husband died in my arms at home.  His last day of full brain radiation, filled with tumors throughout the body.  In my heart, if we got to the last appt for the 10 days, the next day he was scheduled to start agressive immunotherapy.  That last day came too soon.

Hard year, in retrospect I wasted too much time researching and reading - I should have just been holding him.  My biggest regret.

Take care warrioirs, prayers are for you.

 

Rita

Rita

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/3/2018 - 1:56am
Replies by: Anonymous, Janner, jennunicorn

Hello! I have read this forum for over a year now, but just signed up after a second melanoma. First melanoma discovered Jan. 2017 on upper left back. Was staged aged melanoma in-situ. Did deep excision surgery to ensure all was removed and got clear margins. I continued to go to dermatologist nearly every month, removing 3 moles at a time, all moles came back as mild-severe dysplastics. Jan. 2018, I noticed one on my head was a little larger than I thought it used to be. My doctor had it removed and called a couple weeks ago to tell me it was another melanoma. I am in the process of scheduling surgery for removal. At my appointment my doctor recommended a specialist and an oncologist for an evaluation. My husband and parents are pushing for a PET scan. My doctor says typically with new (less than a mm) melanomas, they don’t usually order PET scans. But we can take the steps we can to try to get one and have Insurance cover it. Has anyone here had two melanomas within a year, that went on to an oncologist and had scans done and found nothing? And the opposite. Has anyone had two in situ melanomas within a year, went an oncologist and discovered it was internal? I don’t want to over react, but I don’t want to be in denial either. Any/all information is helpful. Thank you!

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muphinn's picture
Replies 7
Last reply 2/1/2018 - 1:09pm

Hey y'all. I know it is not 'common' to have multiple flavors of Melanoma. Stage 1B in R calf and now R big toe is concerning.

About a month ago I noticed little dark spot at edge of nail and assumed it was dirt.....I usually wear polish so it was not that noticeable til yesterday when I removed polish and now have discoloration over maybe a third of the nail. No history of injury and it causes no pain to push on the nail.

If I knew how the heck to attach a picture, I would!

I see my derm for routine follow up in March but this is not so much a fun way to spend the next month.

Any insight other than don't panic? I am not the type to panic so no worries. I am, however, the type to have had an exceptionally bad record when it comes to having unusual/lousy things happen in my life. So anything that starts with, "well the odds are...." I have already lost that game.

(and if you can direct me to posting a fancy toe picture, much appreciation!)

 

Thanks!

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/31/2018 - 9:17am
Replies by: Anonymous

I had a c.t scan and it showed a lobulted mass on left upper lobe of lung suspicious of a metastasis .does that mean it has spread from lung elsewhere or I have it somewhere else and has gone to lung

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/31/2018 - 10:00pm
Replies by: BrianP

I'm just Curious in Overall        is H. Lee Moffitt   Or Duke Cancer Institute        better for The Overall  Treatment   Of Melanoma??? 

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