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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petie540's picture
Replies 2
Last reply 5/6/2011 - 11:11pm
Replies by: petie540, Charlie S

Being a melanoma patient and a practicing psychiatrist perhaps I could be of help to the folks out there

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Carmon in NM's picture
Replies 1
Last reply 5/6/2011 - 11:07pm
Replies by: lhaley
Yesterday my husband and I met with our new radiation oncologist and we both really liked him. Dr Schroeder is young, energetic, interactive and very up to date with his knowledge of current research and treatments for melanoma. Best of all, he was on the same page as we are regarding prophylactic whole brain radiation (WBR) and radiation therapy.
Like us, his feeling was that WBR should be held back as a last resort treatment for me if I should have recurrance in my brain that cannot be managed with gamma knife surgery. He talked about with the size of the tumor that bled last year, I most certainly had other melanoma cells in my brain. The fact that I have had no recurrance in nearly a year is an excellent sign and to him means that most likely my body has handled them on its own.
On using radiation therapy on the adrenal tumor site as a prophylactic treatment, I was on the fence on it and would have agreed had he thought it was a good idea. But he didn't. He said with no active disease there or anywhere else, there was nothing for him to focus on and since the adrenal gland is located in the middle of a lot of organs including the bowel and spine, it would be too easy to also damage organs that either couldn't be repaired, or repaired with great difficulty and all of it life threatening.
So the decision we all agreed on is that I should enjoy the summer with a break from any treatment! And he will continue to follow my case with consultations after each of my three month scans. I feel very good about that as I was impressed with his level of knowledge on melanoma and that he isn't a doctor who wants to jump into treatments just to be doing something.
So there you have it! My next scans will be on July 11th and we all hope that closing notation of 'No evidence of metastatic disease.' continues to show up on these scan reports too.
Carmon in NM - Stage IIIb 9/2008, Stage IV 6/2010 with brain and adrenal mets. NED since 4/13/2011 after craniotomy, gamma knife surgery and clinical drug trial with carboplatin, paclitaxel and temodar.
Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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I don't know how many people have read about the remarkable work that Dr Steven Rosenberg has
been doing. As many new members of this forum may not realise that one of his patients has a
truly amazing story to tell, I think that is it timely to post the link to the details of his
"journey through stage 4 melanoma" here:

This is a link to a recent post by Warren Galinat that somehow didn't get the attention that it

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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adgesoph's picture
Replies 10
Last reply 5/6/2011 - 8:49pm


I just wanted to share that after a year of battling melanoma my dad has gone to be with the Lord.  Things went down hill quickly after not responding to IL-2, and braf and then b-raf for brain mets. We were hoping to give ipi a try but there just wasn't time. He fought to the very end and so badly wanted to beat this horrible disease.  His father and sister also battled melanoma and passed away.  

I wanted to say thank you for this forum and the knowledge and information you all share.  I admire all those that are fighting melanoma and hope and pray that a cure can be found.  Continue to fight and never lose hope.

My dad will be missed tremendously by many but we know that melanoma know longer has a hold of him.  

Here is my blog where I pay a little tribute to him if you're interested:

Thanks again for all you do and stay strong!!!



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Replies by: EmilyandMike

My husband is stage 4 with three subcutaneous sites and one that is on the vein leading to his pancreas.  He went on Ipi after no results with il2 and not qualifying for BRAF.  He has been on Ipi for 12 weeks and one of his sites has tripled in size and is now painful.  Our doctor thinks it's "swollen" because the Ipi has stimulated his immune system to attack it.  I don't like the "wait and see" approach so wondering if anyone can share their experience.  I would rather take action if the most common experience is that the Ipi didn't work if the tumors grew.


Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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kjshaner444's picture
Replies 0

Is Yervoy prescribed only for late stage melanoma? And, what defines "late stage"?  Thanks.

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I was just wondering if my sister is getting the most out of her oncologist and if her scans for her stage are normal. Sara has stage 3b diagnosed Sept 09 and did the 1 year of interferon which she finished this past Feb. She was having routine 3 month scans which included MRI's and CT's however she only had 1 PET scan right after diagnosis as well as only 1 brain MRI.  At her last visit when she finished her interferon the oncologist told her he would be moving the scans to every 6 months. He told us that repeated use of the scans every 3 months could pose long term risks. My sisters primary was 3mm and ulcerated and had a mitosis of 15/mm and she had microscopic involvement in the sentnial lymph node. We just want to make sure that we are being proactive and as aggressive as we can be. 

1. My first question, is it standard to not give a PET scan for routine scans and use it just for a baseline? And rather have MRI's and CT's?

2. Is it standard to move scans to every 6 months when she hasn't even been NED for 2 years yet?

We are looking into switching oncologist and going to University of Wisconsin Madison Comprehensive Cancer Center, but would like to know if this would be the same course of action that most dr's take for stage 3... any insight would be greatly appreciated!!

Thanks so much,
Jessica (Twin sister diagnosed with stage 3b) 

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Hello, I'm new here. Was instructed by someone on another message board to come here, post my report, and ask for "Regs or Janner".  Thanks in advance to all for your thoughts and advice, it is appreciated.

I had a small mole removed recently, after the pathology report came back the dermatologist said we needed to do further excision.  This is the first mole I've had removed with any suspicious findings.  Basically, the findings are equivocal, they say that they cannot exclude melanoma and report recommends conservative re-excision. This has already been scheduled, basically I need to know what questions to ask.

DX: Lentiginous compound nevus dysplastic type with severe dysplasia, extending to all the margins with postinflammatory pigmentary alteration. Conservative re-excision is advised.  Comment: Pagetoid extension of melanocytes are seen. Special stains are pending.

Tissue measured 0.3x0.3cm in greatest dimension. Entire specimen submitted in one cassette.

Dermoepidermal junction contains a primarily nested melanocytic proliferation. Within the superficial dermis, discrete nests of melanocytes with slightly smaller nuclei are present. lateral to the dermal portion of the lesion moderately atypical melanocytes proliferate which bridge and fuse adjacent rete and are associated with a superficial fibrosis of the papillary dermis.  There is a proflieration of solitary melanocytes at the dermal-epidermal junction. In the superficial dermis, melanophages and scattered mononuclear cells surround capillaries.

Immunohistochemical studies reveal with anti-melan-A stain, a diffuse melanocytic hyperplasia with focal pagetoid extension of melanocytes.

Comment: it is difficult to exclude an early, evolving malignant melanoma in situ, superficial spreading type, arising in association with compound nevus dysplastic type with severe dysplasia, extending to all the margins.


The pathology analysis was done by dermatopathologists, reviewed by a fellow as well as intradepartmental review session (all from a teaching hospital in NYC). All agreed on report.

My question is -- what stands out for you? what should I be asking my doctor? In the NYC area who should I ask for a 2nd opinion from?  what will they be able to tell from this larger excision, if anything? if they still can't tell if it's melanoma, then what?  Also, I'm in my mid-late 30s, female, if that's of use to know.

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Manubuzzi's picture
Replies 5
Last reply 5/6/2011 - 4:27pm


Greetings to all, 
Hope you are doing well. 
My mom already had two weeks of whole brain radiation and already finished a session of 6 days with temodar.  Since then, she has regained some speech abilities and her motor skills have (slightly) increased.  However, now, we have a new worry:  her concentration, comprehension, and memory have noticeably worsened.  She confuses colors and body parts, she cannot remember the names of her children, she has a hard time understanding orders, and she confuses her words.  At times she has moments of clarity where she is completely lucid and coordinated, but those moments are getting fewer and farther between.  
Has any one of you suffered these types of confusions with radiation treatment?  She does have several brain tumors, and maybe those are to blame for her current state, but I just cannot believe that they have advanced so quickly in so little time.  Please write me with your experiences or ANY advice you have.
A hug from Argentina,
Son of patient

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Anonymous's picture
Replies 0

Hi Jim,


Came across one of your all posts & wondered how you are doing with your decision to have scans early or continue with the drug you are taking at Angeles clinic.

Decisions are always difficult when it come to treatment but I know that you will make the correct choice for you.

Please keep us posted.

Wishing you the best


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Lisa13's picture
Replies 13
Last reply 5/6/2011 - 3:57pm

I just got a call from my oncologist regarding my CT scan. They found some very small nodules in my lungs (up to 20) and my oncologist wants to have me do another CT in a month to see if they've grown in size.  He also wants his radiologist double check the scans as well as not all nodules are cancerous.  Unfortunately, this means I won't be able to participate in the ipi trial in Montreal.

Has anyone had nodules turn up that arn't cancer?  I'm really trying to hold it together until I have something to worry about, but this is incredibly hard.


Many impossible things have been accomplished for those who refuse to quit

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I'm curious if anyone on Medicare has gotten Yervoy since FDA approval? I have found out that BMS does not have any assistance for those on Medicare. In calling Medicare, they cannot tell me if they can help. I was told they don't pre-approve, that my doctor's office can call an access number and talk to someone. I have a call into my doc's office and hope they will be able to find something out.

I was on the compassionate Ipi trial, which I finished Dec. 29, 2010.I have ocular and cutaneous melanoma. My first scan after the course was not good, with new liver lesions and lymphadenopathy. It was decided to scan again in Feb. My Feb. scans showed one less liver lesion and some reduction in a couple others, still lymphadenopathy. It was felt I was having an inflammatory response and that I also was eligible for re-induction, should I need it. April 7th scans showed decrease in hepatic metastases(now down to 4), decrease in multiple mesenteric metastases and retroperitoneal adenopathy BUT increase in size & number of mediastinal nodes. They're not sure if this is progression OR  Ipi/Yervoy doing it's thing. I'm scheduled for another scan May 24th. I'm hopeful, as all the abdomen STUFF looks better BUT am being pro-active in looking into getting Yervoy if upcoming scans don't look so good!



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teach's picture
Replies 2
Last reply 5/6/2011 - 10:57am
Replies by: dian in spokane, nicoli

I had an early melanoma removed in October  2007.  Recently, for the last month or so, the scar has become terribly itchy.  It is on my back, and I can't see it, so I had my husband take a look.  He can't see anything unusual, and he didn't feel any bumps.  I am somewhat concerned, since it has been so long since my surgery.  I just wondered if anyone here had had a recurrence with a symptom like this.   I am watching it, but don't want to be paranoid.  

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TracyLee's picture
Replies 1
Last reply 5/6/2011 - 10:45am
Replies by: KatyWI

Today is my radiation consult for "the plan".

What should I be asking? I am getting two second opinions before beginning radiation.

My melanoma is scalp centered, with neck involvement.


Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Shelby - MRF's picture
Replies 9
Last reply 5/6/2011 - 10:05am

Hello everyone! 

We have had several requests for some change regarding the viewing of posts on the bulletin board.  We were able to get a quote on making an internal change to the website so that users can sort posts by personal preference, either by last reply date OR by original post date.  This will hopefully help with the issues that have been brought to our attention.  The quote was just given to us but we have given them the go-ahead to make these changes.  Once we have an estimated date that this will go into effect, I will announce that in this message.  Thanks so much for your patience, understanding, and input and please don't hesitate to contact me if you have any questions/concerns regarding this change.  Have a wonderful day!

Shelby - MRF

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