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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distracted's picture
Replies 6
Last reply 8/19/2015 - 3:43am

Just saying hi at the moment. Invasive Melanoma in the chest, Breslow 6mm, Clarks IV. Removed and biopsied, Stage 2 confirmed.  

MRI (brain), PET/CT, Ultrasound (with needle biopsy) results due in a day or so.

1.1cm abnormality found in the draining lymph node. 2 abnormalitles found under the arm. (These are the areas needled biopsy and currently with pathology)

Stage 3 confirmation a certainty. Stage 4 pretty much the same.

I have a great team looking after me.

 

PET/CT scan are amazing though I wish I knew more about how to read this stuff. White spots on the brain, just stuff like that but I will know more once I have seem the report, . I am currently hoping for the best, but preparing for the worst.  

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/18/2015 - 5:10am
Replies by: Millykamp, Thandster

Hello again. 

I go this Wednesday to U of M for the whole testing, full body exam, blood work and all. And meeting with the Ocologiat Dr. Chang to talk about my surgery. 

I was wondering what are some of the questions I should be asking? I got some written down but in case I am forgetting some, I am hoping you guys can help me out..  Thanks 

Melissa 

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/18/2015 - 7:25pm
Replies by: Anonymous, stars, Tim--MRF

I had a mole on my leg that a surgeon removed on Wednesday. The mole was very concerning to me (it itched and sometimes was painful to touch) and I had been worrying about it non-stop for 2 years. (that’s when i first noticed it). 3 GPs told me the mole is nothing to worry about, 1 dermatologist also confirmed that the mole doesn’t look like a melanoma but told me to watch for changes. (He looked at the mole with something that looked like a magnifying glass and a light under the glass). Then it came the last dermatologist I saw, and the first thing she said was that it looks dark. She said it is better to have it removed so i can stop worrying, but she seemed to be concerned about how dark my mole was. Is dark always bad? she got an appointment for me from a surgeon the day after i saw her and the surgeon removed the mole (through punch biopsy). The surgeon didn’t also seem to be concerned. First thing he said was well this doesn’t look that bad. 

My mole was 4mm with brown borders and a dark (almost a dark black) centre. it was flat, and it didn’t grow a lot in 2 years. Maybe 1mm-2mm. (I guess that is still considered a change but i also gained weight, so not sure if that would be the reason for change in size)
They said I will get the results on the 26th when I go back to remove my stitches. I can’t help the worrying. I do suffer from health anxiety and I’m finding it very hard to cope with the waiting. I actually had a dream last night that I was told I have melanoma. 
How should one cope with the stress? I’m having nightmares when i sleep and I just think it’s causing a great deal of stress on me which can’t be healthy. I’m a male in my mid 20s.
 
Is it safe to assume that when 3 GPs and one dermatologist thought the mole is not melanoma, i should stop worrying about it? I have read so many stories about moles that ended up being melanoma and the doctors also considered those moles normal so that makes me even more worried. 
 
This is a picture of mole the day I had it removed from my leg. 

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Replies by: stars, davekarrie, Tim--MRF

Hello all,

I am wondering if there are any stats on the most durable treatment for widespread stage 4 mel. I have read that there are people out there more than 5/10 years who are NED.  Has there been any studies on these individuals and treatements that may be the most durable with prolonged NED?  I know everyone is different with regards to age, disease and other things.

Just can't imaging not being here for my family and will do anything to get to NED! Hate this disease.

Love to you all, keep up the fight!!

Live life to the fullest and enjoy each day! #noonefightsalone

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DZnDef's picture
Replies 2
Last reply 8/17/2015 - 4:23pm
Replies by: DZnDef, Anonymous

Can anyone tell me if this is something to be concerned about?  I have never seen anything like it.  This person has a 1cm dark mole in the center of their back that's always been there.  But it also has a large white patch all the way around it.  Like a perfect circle of whiteness that is at least double the size of the mole.  Does anyone have experience or insight on a situation like this?  

Does the answer change if this mole is on an 11-year-old girl?

Hoping I'm just being paranoid due to my own situation.  This precious girl is my niece.

Maggie - Stave IV (lung mets unknown primary) since July 2012

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Hayden30's picture
Replies 3
Last reply 8/17/2015 - 10:18am
Replies by: Anonymous, Mat, jamieth29

 

ive been on mekinist and tafinlar for 2 weeks now, and in that time I've had several subcutaneous tumors that I can feel get smaller and some I can't even feel anymore. I know that the drugs are working, but in that same two weeks I had a tumor in my brain grow from 4mm to 20mm!! I've talked to two melanoma specialists that say the drugs do cross the blood brain barrier, and that's the reason my doc put me on them to begin with. Now I'm reading about it and getting conflicting info. Does it take them longer to work on the brain possibly? 

 

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jahendry12's picture
Replies 23
Last reply 8/19/2015 - 3:24pm

Very sad news this morning. Our brave warrior known on this forum as Jerry from Fauq has been sent to be with God. He was one of a kind. He defied all odds and reminded everyone in the melanoma community that they are not a statistic and there is no expiration date stamped on them.  He beat the odds for 8 years so he could help educate and support others. A huge heart, a wealth of knowledge and a kind, giving, humorous man. He was the first one to reach out to me on chat when my husband was diagnosed 4 years ago.  You will be missed T Jerry Ellis ❤️

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DianaD's picture
Replies 6
Last reply 8/15/2015 - 8:48pm

Waiting for biosy results over a weekend is the pitts!  I found this information about why biopsies can take so long: 

 

What happens to the skin sample after the biopsy is removed?

After the biopsy, the skin sample is fixed in special solution, and thin sections of the tissue are cut and placed on microscope slides. The slides are stained for examination by a doctor (usually a dermatologist or pathologist). Sometimes specialized stains are used to examine for antibodies, immune proteins, and other markers of certain diseases. Initial routine biopsy results can be obtained in 48 hours or less, while specialized staining techniques can require a much longer time until final results are available.
I had the mole on my back removed this past Monday at the University of Chicago.  The doctor told me that a dermopatholgist would look at it the next day, but that it could take up to two weeks for me to receive the pathology report. 
Separately, I've just been diagnosed with liver disease, of unkown cause.  I'm flying to Chicaog again on Monday, to see a liver specialist at the University of Chicago, on Tuesday morning.  
I'm hoping that it's not the worst case scenario, i.e., melanoma with mets to the liver. 
Although I live in Ann Arbor, Michigan, which is home to the University of Michigan Health System, I was able to get appointments for both the biopsy and the liver consultation more quickly at the University of Chicago.  I'll use the U of M appointments for second opinions. 

DianaD

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melissalynne's picture
Replies 1
Last reply 8/15/2015 - 4:36am
Replies by: stars

About 2 weeks ago I had a place come up next to my eye. It appeared all at once and resembles a pimple but never has went away. It is pink. Does this sound like a skin cancer and if so what type?? I had melanoma in situ a couple of months ago on leg but this spot looks nothing like that did

Melissa Riley

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stars's picture
Replies 14
Last reply 8/20/2015 - 10:56am
Replies by: Bubbles, Anonymous, Mat, jpg, becky15, stars

Hi

Just a shout out to fellow thin-mellers (well, I'm not thin, but I've had three thin mels).

This is a 2012 study from my home state, Queensland aka skin cancer capital of universe.

http://espace.library.uq.edu.au/view/UQ:275517

It shows 20-year survival for people with thin mels to be 96%.

Three things I like about this study:

- I like survival stat % beginning with '90'

- I like survival span of 20 (vs 5 or 10 years) - for me this translates into seeing my young kids into adulthood, not teenagerhood)

- I like that it's from 2012 and surely, if anything, things have gotten better since then with all the new therapies.

Hope some other MRFers get some solace from this (reasonably) good-news study.

Stars

 

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BrianP's picture
Replies 13
Last reply 8/29/2015 - 2:32pm

As many of you know I have been on a sequential trial of ipi and nivo for the last two years.  I started the trial with 2 tumors in my abdomen.  Those two tumors are now about 50% of what they were at about 2 and 1 cm.  I had my last trial infusion of nivo on Wednesday.  For the last couple months I've been thinking about what to do at the end of this trial.  All along I've been thinking about continuing treatment for at least another 6 months to see if more data becomes available on durability and recurrence of patients who have stopped treatment.  I traveled down to Moffitt a few weeks ago and talked with Celeste's favorite Doctor, Dr. Weber.  His recommendation for me was to stop treatment.  He primarily based this recommendation on his first nivo trial.  He said he had 15 patients who either made it to 2 years or made it a significant time before having to stop treatment due to side effects.  Of these 15 patients none have had a recurrence.  I didn't ask him how long it's been since these patients stopped treatment but I would imagine they are in the 1 to 2 year range now.  He also pointed out those patients were on a lesser dosing schedule than I've been on.  I asked him why so many patients who respond seem to have a response like me rather than a complete response and he said it appears that our immune system "walls" off the melanoma.  His believes that the nivolumab should be given to maximum benefit (achieve NED or achieve stable disease) plus 6 months. 

I have my next scan in about a month followed by a CT guided biopsy.  In the meantime I guess I'm having a "vacation" from nivo.  Based on the biopsy results will determine my next course.  If it comes back as necrotic I'll be done with treatment.  If it isn't necrotic I'll be looking at resecting the remaining tumors.  Dr. Weber said don't be surprised if it's not necrotic. 

Anyway, just wanted to share Dr. Weber's thoughts with those in the same boat as me.  Coming off the drug cold turkey is not an easy thing to do, especially when you are virtually experiencing zero side effects.  If anyone has had any similar conversations with their doctors I'd be curious to hear them.  I know Laura's Dr. Hodi has a very different take on this. 

Brian

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davekarrie's picture
Replies 8
Last reply 8/24/2015 - 12:54am

Well, it is no unfortunately official, my biopsy in my abdomen last week is positive for melanoma. So its in my lungs, abdomen and a C7 neck vertebra. I am most worried about the neck at this point.  We go back to mayo aug25, they are still testing for the gene mutations to determine treatment. Just so many questions, will they operate on any of the tumors?  The radioligist said the abdomen tumor is free floating, I am starting to get a bit of pain at times in my neck, don't know if thats from the met or I am just paranoid. I feel great otherwise, and am ready to fight this beast!! Much love to all #noonefightsalone!

Live life to the fullest and enjoy each day! #noonefightsalone

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green7ea's picture
Replies 6
Last reply 8/19/2015 - 12:46pm
Replies by: green7ea, dfeng, CHD

Hi everyone,

My cousin, 32 and otherwise very healthy, was recently diagnosed with oral mucosal melanoma.  We've been on the hunt for a specialist or cancer center in Canada that have experience in treating this form of cancer.  Right now we have an option to treat him in China for the short term, as they have more experience with this type of cancer.  But we need to figure out an option for his long term care within Canada, can't keep going back to China.  Does anyone have any knowledge of who/where we should go to for help on his treatment?

Thank you so much for your help!!

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Anonymous's picture
Replies 3
Last reply 8/16/2015 - 10:51pm
Replies by: cricket, Mom2Addy, DianaD

Can someone recommend a good dermatologist who is up on melanoma in Charlotte, NC? Thank you! 

Cricket

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Anonymous's picture
Replies 1
Last reply 8/14/2015 - 4:30pm
Replies by: DianaD

Can someone recommend a good dermatologist who is up on melanoma in Charlotte, NC? Thank you! 

Cricket

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