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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My husband was diagnosed with Desmoplastic Melanoma (DM) on the crown of his head, which is a rare type that affects anywhere from 1% - 4% of melanomas depending on what you read.  It also frequently recurs locally.  As such, the doctor says that the melanoma does not behave in the same ways as other types.  DM has no color usually, his was just a bump on his head.  As such, it usually goes undiagnosed and can get quite large before it gets recognized.  We thought it was a cyst.

He had surgery 2 weeks ago to remove 2 cm margin around the site, replacing the tissue with a skin graft.  They did not do lymph node biopsy because of the location of the lymph nodes, and the percentage of lymph node involvement with DM is only 7% usually.   We got the pathology report back.  The margins were clear, but I'm concerned about the other things I'm reading in the path report.  When I look them up on the internet, most of the features look very negative.  The doctor says that DM doesn't follow the normal course, and I hope he's right.  Anyone know about this?  

Here are the results:

Top of scalp, excision:

Histologic type:  Malignant melanoma, desmoplastic type, sectional edges involved comment.

Clark's level:  V

Breslow depth:  At least 0.5 cm

Vertical growth phase:  Present

Ulceration:  Absent.

Lymphovascular invasion:  Absent.

Perineural invasion:  Present

Tumor infiltrating lymphocytes:  Not brisk.

Regression:  Absent

Mitotic figures:  Up to 5 per mm squared

Tumor micros-satellites:  Absent

Precursor lesions:  Absent

"The lesion extends to and involves the deep inked margin and is <1 mm from the 12 o'clock inked margin.  The 3, 6, and 9 o'clock margins appear clear by >1.0 cm.  The separately submitted en face margins show multiple foci of atypical intraepidermal melanocytic proliferation which may represent a field effect phenomenon."

Pathologic stage:  pT4a, pNX, pMX

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paleskinisin's picture
Replies 9
Last reply 9/21/2010 - 12:50pm

I'm wondering if there are any AZ patients on here that are later stage.  I'm stage IV and looking at treatment options.  I've been battling for 4 years and feel as though I do have a good team of docs, but I'm looking for second opinions for treatment and just wondering where the AZ folks go for treatment.

Anyone been through treatment here in AZ?  Anyone have a good team of docs to recommend?  Anyone been to Cancer Centers of America that just opened in AZ?



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King's picture
Replies 2
Last reply 9/18/2010 - 7:07am
Replies by: Rocklove, JuleFL

I know Sharon in Reno has been in my thoughts and prayers since her post on the 10th.  I hope that Hospice is doing their job and that Sharon is comfortable and at peace.  Also, thinking about her family and friends.


Stay Strong

Stage IV 7/05 LIver mets

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Anonymous's picture
Replies 8
Last reply 9/22/2010 - 9:54pm
Replies by: King, Lori C, dian in spokane, Rocco, jag, Anonymous, Terra

Anyone hear from Rocco. I think that he had scans 2 weeks ago and he did not post results. So worried about him.

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Brandi's picture
Replies 5
Last reply 10/13/2010 - 6:01pm
Replies by: Brandi, EricNJill, Anonymous, washoegal

Hi everyone,

I am new here I just went to a surgeon today who wants to do a WLE and SLN on me for a spitzoid melanoma that I had removed on my calf. I also have an in situ on my rib cage he wants to do a larger excision on this one as well. My patho is as follows: calf: spitzoid melanoma 1.6cm, margins clear, mitotic rate 0, lymphovascular 0, lymphocytic ifiltrate non brisk, ulceration absent, regression absent. He agreed that the patho results look good and said there is a 10% chance my lymph nodes were affected. Rib cage melanoma in situ original amount taken was .5cm which from what I have read is the recommendation. This doc is supposed to an expert on melanoma he is at UPMC hospital in Pittsburgh. I am just confused as to why he needs to take more on the rib cage. I also want to know if it is standard procedure from what you all know to have the SLN done right off the bat? Thanks for any info you all have.


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New to this bulletin board. Anyone else out there with 100+ mets in their leg on a Braf trial? This is my third trial. Already went through a MART-1 gene therapy/vaccine/IL2 and 4 rounds of ipi. Would love to hear some feedback - positive or not so positive.

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JuleFL's picture
Replies 30
Last reply 9/30/2010 - 12:36pm

My sweet husband, Cal, a former Navy and airline pilot, is now flying in Heaven.  I thank all of you for the information and inspiration that we have received over the last 10 months of this grueling journey.  I wish all of you hope, love and healing.

JuleFL (Cal's loving wife)

Oh, I have slipped the surly bonds of earth and danced the skies on laughter-silvered wings.........put out my hand and touched the face of God. John Gillespie Magee, Jr

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Nebr78's picture
Replies 2
Last reply 9/17/2010 - 10:45pm
Replies by: bcforce, Anonymous

Is there anyone who has serious heart disease and have taken this   Ipilimumab?  Termodar did no good.  I took something before Termodar and it caused a lot of chest pain.  Dr. don't know what to give me.  I can't get into a C. Trial.  Probably too old.   Male 78  Maybe my Melanoma 4 is not bad enough.  I have lump in front of ear, under skin 1" diameter.   One on lymph node near arm pit and spot in lung and spine.  All were growing some last ct scan.

I will not change doctors. This is the 2nd one and cancer treatment seems to be a guessing game anyway.  What are some of the costs of this Ipil?  Conservatine me will not spend what we have chasing all around for a cure.    From Nebraska

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paleskinisin's picture
Replies 15
Last reply 10/3/2010 - 10:58pm

I have been battling this beast for 4 years.  Initial year, 2006, I had mel on back and 3 positive sentinal nodes.  2008 one met to lung - met removed via surgery and 1 year of leukine.  This year kidney removed with mel tumor.  September CT scan shows 3 tumors on lung - all less than 8mm.  My dr., Dr. Evan Hersh at the Arizona Cancer Center is recommending high dose IL-2.  I am hoping to get information from those who have gone through this treatment.  Any suggestions/help you can provide would be greatly appreciated.

Thank you,


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Shelby - MRF's picture
Replies 1
Last reply 9/22/2010 - 12:46pm
Replies by: ValinMtl

Together with the Moffit Cancer Research Center and Massachusetts General Hospital, the Melanoma Research Foundation presents a day of melanoma education dedicated to melanoma patients and the people who support them.



Saturday, Oct. 16, 2010 at the H. Lee Moffitt Cancer Research Center in Tampa, FL

Friday, Oct. 22, 2010 at the Massachusetts General Hospital in Boston, MA


Symposia are FREE to patients, caregivers, family members, and health care providers.  You can register on our website under Programs -- Educational Programs -- Upcoming Educational Programs.  Lunch will be provided. 

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Vermont_Donna's picture
Replies 7
Last reply 9/18/2010 - 8:34am


My PET/CT scans of a week ago lit up everywhere in my leg (the leg where melanoma has been found over the last 4 years). I was three weeks out of radiation when the scans were too soon they said....(although I didnt make the appt, and it had been 4 months since a oncology checkup)....but now I'll know for next time! My oncologist said he has sent my tumor off to be analyzed more in case other treatments are needed, but he wants to wait another 6 to 8 weeks before scanning again. If I notice anything new pop up then I will call right away. I have read all the posts about BRAF and C KIT etc but I have had a hard time absorbing the information as I havent had to think about other treatment options for me up until, possibly not to be coming off sounding stupid or not taking an active enough role in my melanoma cancer care, would people be so kind as to tell me, when he says he is sending the tumor off to be analyzed, what is he looking for and what treatments might that lead too? If needed, as I said after my next scans. There are so many drugs and options and trials etc that are discussed here I do feel a bit overwhelmed with even where to start my own research.

Thanks so much.


Vermont_Donna, stage 3a, post 11 months interferon, post 7 months Gm CSF (leukine), post ILP a year ago, and post TWO different rounds of radiation (basically now my whole leg has been radiated, from ankle to groin)

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workingabroad's picture
Replies 7
Last reply 9/30/2010 - 12:04pm

Hello from someone new here...

My mother has had ML and I've always been quite aware of the need for skin checks, etc.  I've had two negative punch biopsies, and know how important it is to have either punch or excisional biopsies of any suspicious mole.  This summer, a very suspicious mole appeared out of nowhere on my husband's back.  Although it was symmetrical and smooth-edged, it was very dark black, new, and completely out of place.  I insisted that he have it checked out, and schedule a biopsy.  The derm told him that although he didn't think it was cancerous, "it's like playing with a cobra" and he should have it removed.  Today he went back for the procedure.  Unfortunately, I didn't go with him.  The derm convinced my husband that it would be fine to electrically cauterize it, along with some skin tags around his neck.  I could have killed my husband for allowing it, but it was too late.  No tissue was sent for biopsy, so we have no idea whether that lesion was pre-cancerous, cancerous, or benign.  It was simply destroyed.

I didn't know that any derm would still be so ignorant as to *not* send a suspicious mole for biopsy.  However, we are working abroad at the moment (we're from the U.S.) and local derms do not see much ML.  There is not a lot of risk or incidence among the local population.  We thought that since this derm was educated in the UK that he'd be more knowledgeable.

Is there anything that can be done, aside from kicking myself and better educating my husband so he never allows a derm to do this again?  What concerns me is that the derm told my husband (as he was cauterizing):  "This is very black, and very deep."  I'm really worried that it might have been a nodular melanoma.  It terrifies me that we may never know until (God forbid) it's too late.  I haven't expressed this to him, as there doesn't seem to be any point in making him panic about something that's over and done with.  Any advice or words of support are very welcome.

Thank you!

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dian in spokane's picture
Replies 10
Last reply 9/17/2010 - 10:03am

I am back in California where I visited the HOAG yesterday for my 5th vaccine shot. Only 3 more to go!

I had worse side effects this time than any other, and was glad to have bob here with me, AND that I had a hotel room last night and was not sitting on an airplane. My pretreatment (tylenol and codeine) did nothing to stop my headache, and by evening I ached all over..even the joints in my fingers and toes hurt, and I was sick to my stomach, so skipped dinner altogether and climbed into bed with the shivers..even though it was a LOVELY evening here.

But, as usual, I felt much better this morning and I'm up for a nice vacation day at the beach with my sweetheart. Getting ready right now to walk down to the pier to find some lunch spot.

I have PET/CT scheduled for Monday, so we'll see then if I am still NED. It will be my first scan since I started the vaccine. I'll get the results on friday.

That's it for my update!


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mwatts's picture
Replies 3
Last reply 9/17/2010 - 9:57am
Replies by: dian in spokane, mwatts

Hi! I recently had a .3 melenoma removed with margins coming back clear after second time. I was given no further treatment after and just told to go back every 3 months. I am still scared to death it has spread. I have a long history of abnormal moles and still very young. Did anyone else get a PET scan with stage 1 or 2 or even a mole my size? Is this something I should push for? Any opinions would be appreciated =)

Faith is being sure of what we hope for and certain of what we do not see.

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Jim in Denver's picture
Replies 4
Last reply 9/17/2010 - 9:02am
Replies by: Sharyn, ValinMtl, King, molly

Hi All,

Had scans at MDA on Monday this week @ 6 weeks into the Trial.  6 lung mets showed aggregate growth of 13% - well within the 25% growth allowed to stay on the Trial.  Dr. Hwu said that it is common to see some inflammation in response to Ipi, and it is impossible to differentiate between progression and inflammation.  No new mets - also required to stay on this Trial - so the scans we good for me.  Had 3rd Ipi infusion on Tuesday.  Flew in to Houston Monday and back home Tuesday.  I feel very good and am able to do everything I was able to do before starting the Trial, so no complaints.

The Study Nurse went though her list of side effects again.  Seems like diarrhea has been the most common issue in this trial (from Ipi).  Dr. Hwu told me up front that Temodar often produces constipation, so that it tends to counteract the diarrhea from Ipi, and it certainly has for me.  I am actually mildly constipated from the Temodar while I am taking it (4 days, 400 mg each day), but nothing uncomfortable.  My other side effects have been itching (face, neck, and chest), occasional rash (from sun exposure and/or sunscreen), and occasional mild headaches (mainly from Temodar).  I have also developed a small patch of white skin (Vitiligo) on my chest, which is not uncommon.  Other side effects the nurse asked about:  nausea, fatigue, trouble focusing, mouth sores, tingling or loss of feeling in extremities (neuropathy).  I told her I do actually find that I do seem to have more trouble focusing and feel a bit spacy early on in the cycle, but that maybe it just a symptom of age :)

So that is my update.  The 12 week scans should be more telling regarding responsiveness, although Dr. Hwu reiterated that delayed response to Ipi is common.  Responses beyond 12 weeks are not unusual, but are usually apparent by 24 weeks.  Individual range and timing of responses show considerable variation, as many of you have read/heard before.  This does probably not add much to our collective knowledge about Ipi on this board, but I thought I should post how things are going for me in addition to my occasional post to my friends here on MPIP.

Last, but certainly not least,  I hope to go see Jerry Ellis in rehab in Colorado Springs next week.  All of us can draw inspiration, strength, and willingness to help others from Jerry's example.  He is one of a good number of remarkable people I have been fortunate to get to know on this board as each of us go forward on our journeys.  Like many of you, he had offered others here great support and a wealth of information, along with a wonderful sense of humor.  May we all follow his example!  Thank you all so very much for your ongoing support - it means very much to me.

Many Thanks,








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