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
MaryD's picture
Replies 4
Last reply 5/4/2013 - 11:00pm
Replies by: dellriol, POW, awillett1991, jmmm

Does anyone have feedback about using Zelboraf with brain mets present?   For those of you who know our dear Nancy D,   she has completed WBR and a tumor harvested 8 years ago tested positive for the Braf mutation.

Tomorrow Nancy is having complete scans of her brain to see if there has been shinkag of the brain mets and also of the of her body to determine if there is evidence of any other disease sites.

Praying hard that Zelboraf may be an option for her . . .

Thank you for any feedback you can share,


Login or register to post replies.

My local paper just published an article about my journey.  Take a peek.  Hope to see many of you at the race.

God Bless.  


The circumstances of our lives have as much power as we choose to give them. David McNally

Login or register to post replies.

susanr's picture
Replies 3
Last reply 5/1/2013 - 2:43am
Replies by: deardad, washoegal, Fen

Hello Everyone,

I just can't seem to say goodbye to everyone on this board.  I keep on coming back.  Thought I could not visit that often since my brother died in 12/2012. from this enemy called melanoma.  My experience with my brother's battle with melanoma has changed me forever.  A part of me died when he died.  Everyday I think of him, Everyday I cry for what happened to him and others on this forum.  This may sound crazy but when I read some of the stories about all the warriors fighting on this forum, I am almost relieved he does not have to deal with the pain and suffering anymore.  Hope he is in a better place fishing, smoking his cigars, eating without having a monster mass interfering with his entire GI tract, and walking without difficulty anymore.

My heart breaks from the stories I read on this forum.  I just don't know what to say but I try and post at least something even if its a prayer.

I don't like to see anyone make a post and not one reply..vs..some posts get many replies.  Its not fun battling this alone in life let alone on a support group forum when we are all in the same boat.  Unfortunately , I think of this beast melanoma everyday...all the time and I almost feel I have it...I may have it some day...who knows.  I also want people to know that this is just not " skin cancer"  melanoma is different.  As I said in some of my previous posts, medical professionals are stunned when I tell them about melanoma....where it can occur, ABCDE's are not a guarantee...maybe amelanotic....???  not just the skin...but mucous membranes...mouth, sinus, anus, vagina, internal organs as primary spots.  With that said, I am starting my "decorations" for Melanoma Monday and Skin cancer awareness month.  I went online and some things...shirts, pins, banners...are sooooo overpriced.  I am on a budget just like many of us these days.  So what I did was design my own shirt for my angel brother, bought black banners and black ribbon for my front yard, and a poster broadcasting melanoma awareness.  I live on a kind of busy street so it will get attention.  I bought all  of this from Michael's and Ac Moore craft stores using a minimal amount of money.  It will look great and send the message that I am trying to say.  I love to decorate my yard for the holidays and now this month will be extra special....and probably my favorite.

I have to make a post separate from this...there are some of you I need to thank for your reply to my brothers death notice on this forum.

Just to name .....Nahmi, Tina D, NYkaren, snickers60, JoshF, Josh, Cate, Fen, Vivian, BrianP, Aldakota22, swanee, jakeinNY

I can't thank you all enough for those kind posts....I meant a lot to me.  I won't forget you all.

Hope some of you are making plans for melanoma to hear them.


Love to all

Susan...sister of Peter 12/6/2012.

Login or register to post replies.

Anonymous's picture
Replies 7
Last reply 5/29/2013 - 7:45am
Replies by: Anonymous, Janner

"Severely atypical compound melanocytic proliferation consistent with at least melanoma in-situ arising in association with a compound dysplastic nevus with features suggestive of partial regression and with foci suspicious for early invasive melanoma extending to a depth of approximately 0.30 mm.  The differential diagnosis would include melanoma in-situ arising within a compound dysplastic nevus that either has been irritated or undergone partial regression or a early superficially invasive melanoma arising within a compound dysplastic nevus with regression.  I favor early invasive melanoma because some of the melanocytes within the papillary dermis demonstrate similar cytologic atypia to the ones seen in the epidermis.  The atypical melanocytes extend to a depth of approximately 0.30 mm.  The stage would be pT1a.  The melanocytic proliferation appears narrowly excised in planes of section.  A re-excision as clinically indicated is recommended."  Also goes on to say, "Dermal mitoses are not identified."  There is a lot of vocabulary here I don't understand what it all means, but I know melanoma is serious.

Login or register to post replies.

mama1960's picture
Replies 3
Last reply 5/2/2013 - 2:27pm
Replies by: Tamils, awillett1991, Tina D

Got  bone scan results today. Several mets in pelvic area, sacroiliac, L2 vertabrae, eigth rib on left side and tops of humorus, both arms. have almost  no use of arms. The plan is radiation to the hottest spots and then Zelboraff. Any info on either would be helpful.Thanks.

It is what it is.

Login or register to post replies.

lrkg1234's picture
Replies 5
Last reply 4/29/2013 - 2:33pm

So, now I'm on the hunt for an anti-PD1 opening for Scott, just like everyone else. 

Of course I'm leaving lots of messages and waiting for phone calls back. I just called Chicago and Vanderbilt.  If I were lucky enough to find an opening does anyone happen to know what the washout periods are for Yervoy and Temodor?

If you are trying to get into a trial how long will they consider your scans valid before they want another?

Scott needs official scans for both the brain and the entire body in about 2 weeks and we are trying to time it right.  He had a kidney stone this past week and had an "unofficial " abdominal scan that showed the IPI to be partially effective, but not good enough.  Of course if the brain mets are not cleared up then trials are not an option.

We are traveling to MD Anderson in a few weeks and were going to wait and get him scanned there. They may have more ideas for treatment but, if there is an Anti PD-1 trial in the area that would be a better option.  It would be much more affordable to drive than fly. 

He has already had Dasatinib, IL-2, Yervoy and now Temodor.  I don't know what else there is.

This whole thing is stressful, but isn't it worse between treatments?  Deciding what route to take is mind bending.  So many things to think of when you are not thinking straight anyway.

Login or register to post replies.

lrkg1234's picture
Replies 10
Last reply 5/24/2013 - 12:07am

Does anyone know of possible anti PD-1 trial openings for patients previously treated with IPI? 

We are in Indianapolis so anywhere within an 8 hour drive would be best.

What is the best link to use for the most updated, easy to read information on current trials?

Thanks for your help. 

Login or register to post replies.

Linny's picture
Replies 1
Last reply 4/29/2013 - 11:42am
Replies by: Janet Lee

Stage III, Unknown Primary; 1 positive node in left axilla

Login or register to post replies.

5374brian's picture
Replies 2
Last reply 4/29/2013 - 1:17am
Replies by: 5374brian, Phil S

My wife has completed 5 of 10 WBR treatments. After the 4th treatment she has experienced daily nausea and a few upset stomach. Is this a typical side effect? When does it subside? I know not everyone recacts the same but just checking on how others were effected? 


We have been presented a consent form to review for Randomized open lable Phase 3 trial of BMS-936558. The trial is 2 out of 3 will receive the BMS-936558 and the other the investigators choice of either dacarbazine, paclitaxel, carboplatin. Should we enter into a trial like this where it is randomized? Would there be benefit with the other if we dont receiver the BMS? 

Brief history my wife just completed he IPI April 2nd and had her follow up scans April 18th. We were told that the results from IPI were not good enough so they wanted to keep a treatment plan in front of us. 

Login or register to post replies.

Blakejj's picture
Replies 1
Last reply 4/28/2013 - 4:21pm
Replies by: 5374brian



I was wondering if you guys could help with a health insurance question. 

In early 2011 I had a mole removed from my chest that turned out to be malignant melanoma.  Clark’s level II, and Breslow thickness of 0.25mm.  Follow up surgery was a success and the doctor said they got it all.   I have not had any reoccurrences since then.

Fast forward to 2013, and unfortunately I have no health insurance, but now have a job with enough money coming in so I might be able to afford it.  If possible, I would like to purchase it and was looking for guidance on how to proceed as I have been given a lot of conflicting advice. 

If I want insurance now, I have been told by various folks that there are a couple of insurance companies who would be willing to insure me, but most will not.  Thus I should work with a broker to make sure I only apply to the ones who are willing to insure me, as having a denial/rejection for insurance makes it a lot harder to get coverage going forward.  (An insurance broker probably told me this!)  Any thoughts as to the validity of this?  If it is true, which insurance companies are most likely to insure me?  Would future coverage for melanoma excluded (ie they won’t cover any melanoma costs, but will cover other things)?

Alternatively I could wait to 2014.  My understanding is that the ACA says they can’t deny me nor charge me rates any different than their other customers.  Is that true?  If so, could I go to a website like ehealthinsurance, or via a broker, and just apply to the plan I like best?  Is future coverage for melanoma excluded (ie they wont cover any melanoma costs, but will cover other things)?

I understand that the actual execution of the ACA will probably change over the next 7 months, but just trying to figure out things as they stand now.

I am in Texas if it matters.

Any help, thoughts, or guidance is appreciated!


Login or register to post replies.

mamabet's picture
Replies 6
Last reply 4/29/2013 - 12:00pm
Replies by: saengery, mamabet, POW, Anonymous

I was diagnosed with melanoma in September of 2012. It has been a huge emotional challenge for me to remain positive despite my good prognosis. Tumour was 0.88mm, no ulceration, low or no mitosis. My Clark's level was IV, however, and that is what seems to be driving my negativity. Does my Clark's level move me from 1A to 1B? Also, I don't quite understand, despite trying to research it myself, how my stage can be good when my Clark's level is so high? To make matters worse, I am prone to cysts and every time a new one pops up I worry like crazy that its a melanoma growth.
Just to add, I am having another primary removed on May 8. I had this one back in September as well, but no doctor would even entertain it being removed, because they were so focused on the other obvious tumour. But this one has the same texture as the other one, and it is starting to change colour as well, so the oncologist is sure it's melanoma. I'm hoping for an in situ.
Anyway, thanks for listening. This has been a completely devastating diagnosis for me, despite my knowledge that it could be so much worse. Emotionally it has changed my life.

Login or register to post replies.

Anonymous's picture
Replies 7
Last reply 4/28/2013 - 10:08pm
Replies by: Houston, POW, Anonymous, LynnLuc, jeffjohn78, Linny

My husband went to the dermatologist last week and was diagnosed with Melanoma on his shoulder by a dermatologist. The doc said it was .5mm and classified him as T1B. She said that someone from MD Anderson would be calling us next week to schedule an appointment to 'check his lymph nodes'. She also said that it was "dividing rapidly," but didn't give any other details.  We are both in our young 30's with small children and feel completely blind sided by the "C' word. We live in Houston and will be driving to the medical center here for treatment. Here are my questions:

1.) How do we get the pathology report (do we just ask?) and do we need it for ourselves?

2.) What can we expect at our first appointment?

3.) What questions should we ask? (I know there must be questions that you all wish you had asked the first time, so please let us know what they are.)

4.) The big one: IF it has spread to his lymph nodes or beyond, does that change the stage and how soon will we know?


Any help, suggestions, tips, thoughts are MUCH appreciated.

Thanks so much.

Login or register to post replies.

Bunmom's picture
Replies 3
Last reply 4/29/2013 - 12:33am

I'm 22 days post-op for complete axillary lymph node dissection, and my JP drain is still putting out 50-60 cc's per day. My surgeon was worried about infection and wanted it out last week, but I talked him into leaving it as I'm concerned about the output. I'm afraid that pulling it too soon will lead to a seroma or lymphedema. 


I've read on some breast cancer boards that people have had them in for up to 4 weeks, but I haven't seen anything beyond that. 


Did anyone here have theirs in a long time? 

Login or register to post replies.

Replies by: Anonymous, Janner

Just diagnosed with Malignant Melanoma, pathology report states:

0.82mm, Clark's level III, 1 mitosis per mm2.  Type superficial spreading, no ulcerations, microsatellitosis, lymphvascular invasion, or regressions.  The juncional component is comprised of large cells arranges as irregular sized nests and individual units seen throughout all levels of the epidermis. The dermis contains similar nests and individual melanocytes with a dense lymphoplasmacellular infiltrate.  Elsewhere in dermis there is second population of nests of smaller melanocytes.

What does this mean?  Is that a fairly good prognosis?  Any help would be wonderful!  Thanks!

Login or register to post replies.

mama1960's picture
Replies 7
Last reply 4/26/2013 - 12:33pm

Anyone have any info on bone mets? Any word on Zelboraf and bone mets? I am braff positive. Any help regarding the pain? Taking 10MG hydracocone every 4 hours, very little to show. Had bone scan yesterday and will get results Monday. Bone met in shoulder showed up in MRI.

It is what it is.

Login or register to post replies.