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.

Expand/ Collapse Topic
Replies By
View Topic
KimberlyVU's picture
Replies 4
Last reply 6/18/2016 - 2:48pm
Replies by: DZnDef, SABKLYN, youngann, Anonymous

I received my results of my WLE and SNLB yesterday and everything has come back negative! So I remain stage 1b and my doctor is very hopeful. 

I want to thank everyone on this board for sharing their stories and support during the last few months.  


Login or register to post replies.

WithinMySkin's picture
Replies 2
Last reply 6/18/2016 - 10:29am

Hi Everyone! I know there are a few New Englanders on this forum and I wanted to reach out about the Miles for Melanoma event in Boston on July 9th. My amazing friends surprised me by forming a team for me! So I will be there doing the walking event, and the more the merrier! If you'd like to join us for the walk, or cheer us on, or meet up that weekend for a drink and a hug, let me know. You can message me on this forum or through my blog. 

Keep up the good fight! 





Login or register to post replies.

Niki's picture
Replies 9
Last reply 7/2/2016 - 8:19pm
Replies by: desertsun, Niki, Anonymous

Hi All,

I was very active on this board in the 2007 to about 2010 time frame. My husband, Joe, had a Stage IIA nodular melanoma (2.5mm, nonulcerated, high mitotic rate, though I don't remember the number at the moment) removed from his right earlobe in January 2007. He had no other treatment besides WLE/SLN. He also had a PET/CT scan for about the first two years. All has been well. We opted to stop the scans and move on. I have to admit I was obsessed with melanoma research for a couple of years. About drove myself bonkers (and I'm sure my husband too)! But, I did feel I was very well informed if he had needed to make treatment decisions in those years. 

Anyway, I've been out of the melanoma loop for a lot of years. About two weeks ago, Joe started having pretty severe pain in his left jaw area. He's had two tooth abscesses/root canals before, but he said this didn't feel like those did. He saw the dentist on Wednesday. She did bite wing xrays on that side and an exam and said she didn't find anything that would lead her to believe he had an abscess or anything along those lines. She referred him to an endodontist. He saw him yesterday. He also couldn't find anything and suggested a referrel to a periodontist. This is all fine, and we're hoping it is something dental though he has no evidence at all of gum disease. Endodontist gave him a Rx for amoxicillin (in case there's some kind of infection that's not readily evident) and 800 mg ibuprofen, which has helped with pain management since yesterday.

The pain has been up and down, at times very severe. So while pursuing the dental options, I thought it might be a good idea to get our family doctor involved. She thought with his history and with the dentist and endodontist not finding anything, it would be a good idea to get a head CT scan. That will happen on Wednesday afternoon.

So, here we are. I needed someone to vent to who would understand how hard the waiting is. Janner, if you're still here on this board, something you said all those years ago has really stuck with me. That was, "When you hear hoof beats, think horses, not zebras." I've thought back to that quote many times over the years. I shared it with my husband a few days ago, so I'm hoping he's looking for horses too!

Will let you know what happens. Thanks for listening. Niki

Login or register to post replies.

Ajwells's picture
Replies 1
Last reply 6/17/2016 - 2:10pm
Replies by: jennunicorn

My suprahyoid neck dissection on the left side is Monday.  I'm pretty nervous. I did too much research.  It's a much scarier surgery than I thought it would be. So many important things in that area.  First of all my irrational-ish fear: I sing. Not to sound cocky, but I'm pretty good at it.  It's something I'm known for. The moment my surgical oncologist told me about the risks of damaging my vocal cords I actually said "woah woah woah...  Those have to stay the way they are. Nooooo vocal cord damage!"  

I know my surgeon is good, and there will also be a superior surgeon who specializes in head and neck surgeries in there helping. So chances are slimmer than slim anything will get damaged. Doesn't mean I'm not super scared.

Luckily I have an army of friends and family who will be here to help me recover. To take care of my three young daughters and all of that. 

But speaking about family....  I have an aunt who was diagnosed with Ovarian cancer in 2012. They caught it really early, and like me there was only microscopic spreading to lymph nodes.  She had a total hysterectomy and a couple rounds of chemo and she was in remission. Has been in remission for 4 years... 

Yesterday my dad called me to tell me the cancer was back.  On her liver.  Terminal. Even with diligent care and a close eye. That happened. She didn't stand a chance. Now I feel like even when I get rid of this thing with the surgeries and the immunotherapy...  Do I stand a chance?  Is this thing like an evil super villain who never seems to die at the end of the movie, gearing up for a sequel?  

I will definitely be bringing up her recurrence to my medical oncologist. And how I want them to be as aggressive as they feel needed. I don't want to live my life afraid. Like this thing will be secretly hiding out in the shadows waiting for the very wrong time to peak it's ugly head out on my brain. Or wherever. 

As we all know....  It's just not fair...  It's just.  Not.  Fair.  

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

Login or register to post replies.

Society for Melanoma Research Congress - Amazon Web Services

by JS Weber - ‎2015

Richard DCarvajal, MD. Associate Professor of Medicine. Director, Experimental Therapeutics. Director, Melanoma Service. Columbia University Medical


Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 6/18/2016 - 10:06am

I have a lot of moles on my head. They all look different from the naked eye but I saw a derm and he looked under the scope. He said under the scope they all look similar and that he's not concerned at all.

I said is it worth biopsy them and he said no. Now I will admit I'm very anxious and will always think the worst.

I am going to do monthly checks for change, was this a good decision? I was planning to remove about 3 of them but because they look similar under the scope I didn't.

Login or register to post replies.

vickiaa0529's picture
Replies 11
Last reply 6/17/2016 - 12:50pm


I went for scans yesterday and was told all was clear but now I am reading the results, which my husband accidentaly took to work with him today and


The report says:

Lungs: subcentimeter subpleural nodules (302/26,64) without FDG activity on the prior PET/CT not definitively seen on prior PET/CT. These are indeterminate, attention needed in the follow up.


Yikes now I am scared all over


Login or register to post replies.

Ace226's picture
Replies 9
Last reply 6/19/2016 - 9:45am
Replies by: Richard_K, WithinMySkin, Ace226, Bubbles, Linny, BrianP, Anonymous, SABKLYN

My father has metastatic melanoma. Originally diagnosed in 1982 but relapsed in 2014. He has had several brain tumors (treated with gamma knife) and he has been on yervoy (still had spread) keytruda (worked really well but caused colitis) and now Opdivo. The opdivo has caused less side effects but now there is concern for 2 more brain tumors and melanoma in his cerebral spinal fluid. He had been seen this whole time at UVA but I want him to get a second opinion. Can anyone please recommend melanoma specialists for advanced melanoma? Preferably on the east coast but would be willing to travel. 

Also, if any body had had experience with melanoma in the CSF and tell me about it if appreciate it. 

Thank you!!

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 6/16/2016 - 4:33pm
Replies by: Janner

I got a skin check shortly after finding out my grandma had two spots of carcinoma removed. I use a tanning bed regularly, so after her scare, I decided to be checked as well. 

At my appointment the dermatologist removed one mole that I hadn't noticed any changes in, I've had it my entire life, but she had pointed out that it was pink around the edges. I believe she did a punch - kind of leaving a small hole in my shoulder. Two weeks out it's still not healing well - the scab keeps falling off, I think because of it being a little deep. Anyways, not the point. 

They called me a week later telling me that it came back as moderately atypical, and that the cells are changing, not melanoma yet, but starting to form it? I'm not sure how that was worded, or how well that makes sense. 

I now have an appointment on July 6 to see their plastic surgeon to remove the skin around the mole and send it back in for biopsy. Of course, hearing this is kind of frightening not knowing much about melanoma, how quickly this spot could change into melanoma, if it even could, and what my chances of finding out that it could be melanoma after the biopsy could be. I know I'm all over the place here, it's hard to word all of this when I'm not familiar with the medical field to begin with.

I am just curious what to expect at this point. 

Login or register to post replies.

mdoh's picture
Replies 11
Last reply 6/17/2016 - 5:48pm

Hello all - I'm wondering if anyone has advice on whether to take a vitamin D supplement.  Since being diagnosed with stage 2A one year ago, I've been significantly limiting my sun exposure.  Thinking I might need to take a vitamin D supplement.  Had a CT scan recently that also noted signs of osteopenia.  Any recommendations?

~ Mary

Login or register to post replies.

KimberlyVU's picture
Replies 6
Last reply 6/16/2016 - 10:51pm
Replies by: MoiraM, Janner, youngann, jenny22, jennunicorn, Anonymous

I am new to the board and wanted to see if anyone had advice on how to follow a thread.

i find that I am missing responses to posts I have made as well as other people's posts that I would like to follow the replies. 

is there an easier way other than logging in and checking each post for new replies?

thank you

Login or register to post replies.

lakegirl67's picture
Replies 3
Last reply 6/18/2016 - 9:48am
Replies by: desertsun, debwray, Janner

Hello, I was diagnosed with melanoma in situ on my neck in April. Had the WLE done with 8mm clear margins. I am meeting my family Dr. today - should I request any bloodwork that may be helpful in light of my recent diagnosis? Thanks!

Login or register to post replies.

Bubbles's picture
Replies 8
Last reply 6/16/2016 - 2:47pm

If you like cool graphs and clear explanations of where we've been, time line of new drug approvals, explanations and data from studies looking at targeted therapy, immunotherapy, and changes in target lesion based on treatment...this PDF linked in my post is awesome!!  Out of Italy a presentation by Dr. Ascierto.  Here you go:

Happy Wednesday!  - c

Login or register to post replies.

laulamb's picture
Replies 6
Last reply 6/21/2016 - 3:08pm
Replies by: ilikepralinen, fortiz, MoiraM, KimberlyVU, Anonymous


How do you know if your melanoma is BRAF postive or not?  Should it be on the pathology report when they removed the sental lymph nodes and wide area excision? 


Login or register to post replies.