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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snow white's picture
Replies 3
Last reply 10/13/2016 - 2:48pm

Just a quick update.  They have postponed the surgery for today.  They are treating him with Decadron (steroid) to see if they can get the swelling to come down without surgery.  He is still unable to walk or move much.  He is so AGGITATED, holy cow!!!  He is talking very loud, a bit confused, and more frustrated than I have ever seen him.  They are doing a 2 hour MRI on him today, from head down to shoulders, also bringing in PT to evaluate.

Whew....another day on the Roller Coaster.  Thank you all for your kind words, it means more than you know.



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Just go to:

Helps melanoma patients and families and raises awareness too!

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Anonymous's picture
Replies 3
Last reply 10/12/2016 - 10:12am

Hi, I have just had a (quoting my family doctor) "scary looking thing" of a mole cut from my left labia majora. I understand this is a forum for melanoma patients and I have not been diagnosed with melanoma yet so I hope this is not inappropriate to post but I figure that you may be able to help me interpret what my doctor has told me so far.

first of all, im 18years old (female obviously) and suffer some anxiety/panic attacks so this is experience has been quite uncomfortable. I have had this mole on my left Labia majora since as long as I can remember - possibly since birth. I first brought it to the attention of my mum I think when I was around 8 years old. Naturally, she thought we should get it looked at asap so took me to one of those medical centres because you get in straight away no appointment needed (a bit like supermarket medicine I have come to think). I distinctly remember the doctor (who was a young girl probably not older than 28 or so) saying it was a blood blister that would probably go away. Even at 8 years old I think I knew it wasn't but didn't give it much more thought till my teens. Because of the awkwardness of its location I didn't bring it up with anyone again, until 2 or so months ago when I noticed it has POSSSIBLY gotten the slightest bit bigger. I decided to make an appointment with my doctor to get it out, which to be honest was mostly because I thought it was embarrassing to have (and I had not at all considered melanoma nor knew anything much about it). knowing I wanted it to be taken seriously enough that he would remove it, I told the doctor it has definitely gotten a little bigger (this is the first time he's known about it). He took a punch biopsy, two stitches later, sent off the piece and the pathology test came back benign though I didn't read the exact report. after u had the two stitches out I went back and he told me I could either leave it or remove it, but that the nature of the mole was between the two layers, the epidermis and the dermis (or somewhat within both I'm not sure of his exact words) and that it would grow wider. I think he said something about that aesthetically I would want it removed (and I already do so said go ahead and take it out). He took a biggish chunk and gave me six stitches, and sent that off for another pathology test. I went back yesterday to get the stitches out and the conversation went as follows: 

"I've got good news and bad news for you, good news is that I got it all out, bad news is they want a second opinion on the pathology test". I asked him what would happen if it came back as melanoma and he said "oh well we'll deal with that when we come to it". This freaked me out but I kept my cool until I got home and actually read the pathology report, which he gave me this time. 

This is what it says exactly: 

"clinical notes: left labia lesion, suture marks lateral end of leaion. Wider excision of s16/150481. 

Macroscopic examination: the specimen consists of an ellipse of skin 18x8x5mm beating a brown macular 9x7mm. A sature is present at one poor designated as 12oclock. 

Microsopic examination: the sections of the previous biopsy were reviewed and the findings confirmed. This re-excision specimen shows central dermal scarring and mild inflammation in keeping with The previous biopsy. There is an overlying mild increase in junctional melanocytic activity throughout, with minimal atypia. there is no pagetoid epidermal spread or any other features of malignancy. These changes come within 1.0 mm of each radial margin. 

The possibility of an atypical vulver naevus was considered but the changes appear reactive and Insufficient  for this diagnosis. However, in view of the patients age and if the site of the lesion, further opinion from RPAT [this is my country's major/best hospital / melanoma clinic I have sinced researched and realised] would be advisable. 

The sections have also been examined by other pathologists in the group, who agree with these findings."

ok so, I have two major concerns with this.

1. The mole being 9x7 mm which is beyond the 6mm margin designated for the ABCDE rule (given the nature of the skin at the site it definitely did not appear this big to me so this is a bit of a shock)

2. Now this is the major one playing on my mind. If my doctor did in fact "get it all out" (his words, not the pathologists as far as I can tell in the report?) then what is the purpose of the second opinion they are advising??? Since, from what I gather, they seem to think the mole is ok, I'm GUESSING if they were incorrect,  it couldn't be worse than stage 1 .. Or am I wrong to assume that they couldn't completely stuff up and that it potentially could be worse than stage 1 ?? (Please note what my doctor originally said about the layers epidermis and dermis)..  Ok so IF it is pre cancerous or cancerous and they discover that in the second option at the major hospital pathology clinic, then what does that mean for me ? If it is truly all out what exactly is the purpose of the second opionion? Could this imply that it may have spread beyond the site to lymph nodes if it was intact not a benign mole, hence the need for the second opionion? 

Or, as my mum is trying to convince me, is the second opion merely to confirm that it is being , because if it wasn't they would merely like to have on my medical record that I had a pre cancerous or cancerous mole removed and basically warn me to keep an eye out for other body moles...  I will also note, as my mum thinks, my family doctor is the type to 'sensationalise' things..

I might also mention that I will be waiting 2-3 weeks for the results of this second opionion, and that over these 2-3 weeks I have some very  important high school exams, and all I can think about is that damn second opinion and what that actually means. 

Thank you so much for any information/ interpretation you might have. 

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Anonymous's picture
Replies 0

Creative Proteomics provides protein label-free quantification methods for both relative and absolute quantification, which a rapid and low-cost alternative to other quantitative proteomic approaches.

Label-free quantification is a method in mass spectrometry that aims to determine the relative amount of proteins in two or more biological samples. Unlike other methods for protein quantification, label-free quantification does not use a stable isotope containing compound to chemically bind to and thus label the protein.

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snow white's picture
Replies 5
Last reply 10/12/2016 - 7:31am

Dad had his Gamma Knife on Thursday.  On Sat. he started having a hard time walking.  On Sunday, he felt like he was spinning.  Yesterday, he still could barely walk.  Called doc today because he seemed worse.  Doc. believes he has a brain bleed and has scheduled a MRI later today and do a Crainiectomy tomorrow.

The Roller coaster ride begins.



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Hukill's picture
Replies 4
Last reply 10/12/2016 - 10:06am

On friday, 10/14 i get my scan at 14 weeks of ipi/nivo combo. I hope to not see the 7 mets in my lungs.

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Pcarpent's picture
Replies 1
Last reply 10/12/2016 - 7:43am
Replies by: debwray

Anyone have this happen while on opdivo and what ended up being the problem? Scared for my husband.



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Charlie S's picture
Replies 4
Last reply 10/14/2016 - 8:04am

So, it was ten years:  one hundred and twenty months ago that Kim Hanley died in my arms due to compllications  of melanoma alongside her best friend Mary.

Kim and I were star crossed.   We chatted here in the days when MPIP was rockin' and ended up meeting in person .

We traveled from Des Moines tto the Mayo Clinic to MD 
Anderson to work her problem; which ended up being lung and brain mets.

When her scans looked good, on Monday,  we slapped hands because the lung mets were gone and the brain mets were shrinking.

Friday, she was constipated; ended up getting local scans on Saturday and seeing her local onc on Monday.

Her liver was ate up with melanoma....just in a week.

One week later she wad dead in my arms.

Kim was the best,  I have no doubt that she knew she was dying and dying soon, but she did it with class.

I love her and I miss her, but I am better for the experience.


Charlie S

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Anonymous's picture
Replies 0

They come up with possible treatment options for cancer patients who already failed standard therapies. They try to do that by sorting through all of the latest medical journals and trial data, but it is nearly impossible to keep up.   

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Lizz's picture
Replies 5
Last reply 10/19/2016 - 5:19am

HI can anyone recommend a melanoma oncologist specialist. Diagnosed recently, sentinel lymph node biospy and wide local excision on my arm last week.  I am now awaiting my results of the sentinel which will be available in 2-3 weeks.  I live in England.  Thank you. 

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slh4448's picture
Replies 10
Last reply 10/15/2016 - 11:12am

Hello All,

I just wanted to throw out an ongoing issue to the group here. I had my second ipi 10mg dose back on 9/20. Went pretty well. About a week later w/o 9/26th to now, I have been battling a lot of nausea and episodic diarrhea. Quite a bit of diarrhea too. And not everyday, but there are some days that I am having unbelievable amounts of gas and very raunchy at that. I am in daily communication with my providers. On the 29th they brought me in for iv fluids, worried about my dehydration. On the 30th, I started on 80mg of predisone daily and 30mg of a ppi daily as well. Taking imodium but not more than label. Also taking zofram for the nausea per label. In the last week I went in to my clinic five days apart for blood work and everthing is basically good. WBC a little high, but the doctors believe that is due to my treatments more than anything else. They discussed with me about a possible gi infection, specifically c. diff so I was able to provide a stool sample on Friday and I should hear about those results tomorrow sometime. They also discussed sending me in for a colonoscopy.

I'm eating a very bland diet, don't drink alcohol and limit my caffeine to one 12oz can in the morning when I wake up, that's it. Drinking water, gatorade low in sugar, etc. My providers are very concerned about an infection...something appears to be going on???

My third treatment was scheduled for this coming Thursday, the 13th but they have cancelled that as we need to figure my intestines out first. Wondering about colitis??

So I was curious if anyone has any personal experience or knows of someone that may have or possibly going through this like I am and if so, would you you be comfortable in sharing that with me??

Anyway, hope everybody is as good as they can be!!!!!!!!!!



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Rita and Charles's picture
Replies 5
Last reply 10/11/2016 - 10:50pm

Wow - side effects were horrible BUT another great scan!  NED except 11mm spot near intestines but Onc not worried. So we won't either. Next scan January-  staying strong!!!


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snow white's picture
Replies 13
Last reply 10/11/2016 - 12:39am

Hi Warriors- I need some input from you all.  I am finally back home and we are setting up appointments next week for Dad to start figuring out what the plan is for further treatment.

Ok, so he had the Gamma Knife on the Brain (15mets) on Thursday.  The Brain specialist also mentioned that we could look into doing the Cyber knife on his spleen that has the most mets in his body (I believe more than 20).  Also, they has been mention of removing the spleen completely. Any thoughts on this.  Also, in your best opinion what is the first line of defense next? He is BRAF negative.  Specifically what drugs, combo of drugs etc.  I want to be prepared when we speak to the doctors.  Dr. Margolin offered the clinical trial, but we are pretty sure we don't want to go with that to start off.

Another subject, my Mom is very firm about wanting him to take cannabis oil. I advised that I thought it would be good to speak to the doctors about whether or not it would interfere with other treatments and she said that most Doctors would "poo poo" it. Thoughts? She says that she is concerned about the horrible side effects that he is going to experience, I said that I believe that we should try to be positive in thinking that maybe he wont get bad side effects, she did not agree.  Dad is not super comfortable with the canabis, he doesn't like the way it makes him feel.  Mom wants me to "take over" his vitamins, supplements and meds.  Making sure that he takes everything that he should.  Any suggestions on supplements that you believe are helpful?

Any and all comments are welcome.

Thank you in advance.


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keepthefaith11's picture
Replies 2
Last reply 10/9/2016 - 3:51pm
Replies by: keepthefaith11, geriakt

My dad had his second infusion of Opdivo this past Wednesday. Thursday he started feeling really off balance and dizzy, especially in the first part of the day. This went on for three days. Today Sunday, he is completely fine again. Has anyone experienced dizziness from your infusions? Also, if you have side effects from one infusion does that mean you will keep having them after every infusion?


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