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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awg's picture
Replies 2
Last reply 6/22/2011 - 2:32pm
Replies by: Janner, MichaelFL

As a newer member to the form I want to thank everyone for the abundance of great information that is available, It has been very helpful to me and my family.

I have a friend who was just diagnosed by her derm with a 0.2mm Melanoma on her upper back.

The derm is planning to remove the surrounding tissue, wide excision himself (she was told it could be about half the size of a football) . It is normal for derms to do this?

I know primary depth is a huge determining factor but my derm sent me straight to surgical Onc but my melanoma was greater that 1.0mm.

Would it be best Surgical Onc for Wide excision and do a Node bx as well?




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Linny's picture
Replies 5
Last reply 6/22/2011 - 10:50am

I have Stage III melanoma with an unknown primary. Only one lymph node had tested positive for melanoma in December. Back in January I had all the lymph nodes removed from under my left arm and am NED. Or, I hope I still am.

In March I qualified for the MAGE vaccine trial and in order to qualify I needed to have clean scans, which I did.

Fast forward to last week. I had begun noticing soreness and tenderness at the surgical site. There was no bruising, there was no redness -- it just was sore and tender to the touch. I had a CAT scheduled anyway so I figured that if something was going on it should show up on the scan.

When I went to see Dr. Scharfmann at Johns Hopkins today, I mentioned the pain and tenderness to him and coincidentally enough, he mentioned there was an abnormality found on the CAT scan at my surgical site. All the major organs were fine, though. He could not say with 100% certainty that it was scar tissue but he seems to be favoring that. The pain and tenderness might be an inflammation caused by surgical clips that were left inside. During his exam he found no unusual lumps anywhere. I will need to undergo an ultrasound so the folks at Hopkins can get a closer look at that abnormality. If it looks suspicious they will do a needle biopsy.

He didn't seem overly worried so I'm still on the trial. But it's easy for him to not worry, he's not me! LOL.

I'm trying to remember the positive things (major organs are fine and if melanoma has decided to rear its ugly head it will have been caught early) but I just don't want to dig myself into the same hole I was in back in December when I was first diagnosed. So I'm posting this to find out if anyone here has had a similar experience or knows of someone else who has.


Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Hope Returning's picture
Replies 11
Last reply 6/22/2011 - 10:15am

Is the BRAF test a simple blood test? How do you test for it/?

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Suzgolden's picture
Replies 19
Last reply 6/22/2011 - 9:39am

I was diagnosed in May 2011 stage lll. I had the mapping and Sentinel Lymph Node Biopsy done. The node contained 2 pockets of cells one containing 5 and one containing 15. PET and MRI clear. I see an adjuvant therapy Dr. on the 28th of this month. Interferon (one month only) is what I am told he will be discussing with me. I have been researching interferon and not finding much positive info. I am interested in Ipilimumab. I understand that some doctors are using it for stage lll. I don't think I can handle the wait and watch thing.

I am also in a surgical study where I was randomized to a group who does not have a complete lymph node dissection and instead I have regular ultrasound tests of my lymph node basin. Thats enough waiting and watching for me! 

Any opinions on Ipi?

Whatever You Are Be A Good One -- A. Lincoln Right now I am a FIGHTER!

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sharmon's picture
Replies 13
Last reply 6/22/2011 - 5:26am
Replies by: PeterS, Anonymous, triciad, Rocklove, King, Lori CO, sharmon, emilypen

Hi  An update on Brent,  He has been on the trial since Feb.  He is feeling good and is still working with a Local derm on antibiotics and creams to help with the really really bad rash.  The derm here in Bradenton Fl  was instrumental in producing a cream that is being tested in a trial in CA for inhibitors induced rash.  He is really looking better each day. 

Anyway overall 30 percent reduction and no new mets.  

The week before his scans and the week after the scans  we moved out of our house and into a motorhome.  We are going to travel for 2 months.  He was tired but it was doable for him.

We are Blessed.

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KellieSue's picture
Replies 11
Last reply 6/22/2011 - 4:55am

Well, thankfully my insurance company approved me starting the B-RAF trial, and even quickly at that.

I had to have an extensive eye exam, CT scan of body, ECHO and EKG. Yesterday I met with the head of the trial and was excited to hear I was randomized to the B-RAF drug. She was quite happy too!

I took my first pill last night and am excited to be doing something, instead of just waiting, waiting, waiting for this disease to start growing again in my body!

Here's hoping in 6 weeks I have at least stable scans!

Kellie(from Iowa) Stage IV since June 2008 currently on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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awg's picture
Replies 4
Last reply 6/21/2011 - 11:21pm

Has anyone worked with their insurance agent to make any changes to existing polices after DX and NED given?

What is the NED period they look at?

Were they willing to work with you (I know most likely at a higher rate)?




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StevenK's picture
Replies 4
Last reply 6/21/2011 - 5:36pm
Replies by: StevenK, MichaelFL, lhaley

I got the report back on the skin that was excised to remove the mole and it says the margins were cleared. I asked if the depth was found to be anything other than the .6mm that the intitial biospsy stated, but the nurse said the report didn't contain any information about depth. This confused me since I thought I was going to learn the definitive depth. I asked to speak to the doctor and was told I would have to wait until the end of the day when he's done seeing patients. 

My paranoia is making me think the doctor doesn't want to tell me the bad news, but it could also be that there is no bad news and that's why he feels no rush to put me before his other patients. He's going to call me, supposedly, at the end of the day, but right now I'm confused. Can I take comfort from the fact that the margins were cleared or is that irrelevant if other factors are bad? I can't wait until I'm finished with this doctor.



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Anonymous's picture
Replies 7
Last reply 6/21/2011 - 4:10pm

Hello all!  A relative of mine was just diagnosed with metastatic melanoma and our family is trying to put together a care package to send to her.  I was going to fill it with Eucerin lotion (sensative skin), chap stick, mini travel games like scrabble, magazines, preggo queasy lollipops, peppermint tea (for nausea), lemon drop candies, soft toothbrush, sensative skin baby wipes, germ-x wipes....what else could I put in there?  They start IL-2 treatments next week and being so far away I really want to let her know we are thinking of her...I also plan to send up mini care packages for the next treatments...I want to show continued there anything else that you could help me add?  Thanks so much...and any advice would be greatly appreciated!

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My husband got the phone call from the dermatologist this morning... the area that was biopsied from his abdomen is melanoma. "Leaning more toward Stage IV", the dermatologist said.

My husband is a hypochondriac. He blows things way out of proportion. So I called the derm office myself to find out exactly what they said. They've referred us to a surgical oncologist (best one in the area, they said). SurgOnc will be calling us in 1-2 days to schedule consult.

I am NOT a hypochondriac. I typically down-play things, ESPECIALLY because he gets so worked up about EVERYTHING. But this has me quite concerned.

My husband's melanoma is just (so far) in the one spot... from what we understand. I have so many questions... is he going to die? He's only 38 years old. I thought melanoma deaths were mostly related to older people, like in their 70's and 80's? My grandfather had multiple melanomas, but he also had other severe health problems, including dementia, Parkinson's, etc. I thought he died of ALL those things combined. Even so, if he did die of the melanoma, he lived until he was 75.

Am I going crazy here!?!?! We just had a little girl. She's not even 2 years old yet. I'm only 29 and my husband could be DYING?!?! We have two teenage daughters as well...whom we haven't told yet (we're still reeling from the news this morning). I don't know what to do! I'm just praying & trying to entrust all of this to God. We have no answers until we meet with the SurgOnc.

Any help anyone can provide would be MUCH appreciated. Thank you.

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Shelby - MRF's picture
Replies 1
Last reply 6/21/2011 - 9:09am
Replies by: Carol Taylor

I just wanted to thank you for reviewing your doctor(s) on in May.  Because of you, Avvo donated over $4,000 to the MRF!

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TracyLee's picture
Replies 8
Last reply 6/21/2011 - 8:39am

Hi y'all,

Second ipi on Friday. So far, it's been smooth.

My neck is VERY lumpy with nodes. I choose to believe they are shrieking "no, no, I"m dying" as ipi kicks melanoma's butt!

Other than some moderate sleep issues, I'm feeling well. Husband is still having issues (ear infection now), which makes me smile. Who's the sickly one?? He's basically been sick since Memorial Day!

Praying that everyone who is doing ipi, scans, IL-2, interferon, etc has excellent news and no side effects. We can do this, YES WE CAN!

And, as a side note, I really enjoy the "small" stuff a lot more these days. Ballet recitals, kids starting their first jobs, Father's day. I'm just happy to be here for all of it.


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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EricNJill's picture
Replies 16
Last reply 6/21/2011 - 8:05am

Eric has been losing the loss of his legs and so his Oncologist sent us to the ER last night.  We came home so he cold be comfortable.  He has multiple bilateral cerebral tumors that are hemorrhaging and several cerebellum tumors that are also hemorrhaging. He also has a spinal tumor at C7, T7, and T8 and the cancer in the vertebrae that they found on Wednesday has gotten worse and is putting pressure on his spinal cord now. He has been sent home with Dilaudid so that he can be free of pain as the swelling increases in his brain. These tumors can not be treated with surgery and with the extent of his disease, radiation would also not be suggested.  Please continue to pray for us all.

JillNEric in OH

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Hope Returning's picture
Replies 3
Last reply 6/21/2011 - 2:41am
Replies by: Julie in SoCal

Hi, I want to ask a question regarding the Angeles Clinic. If possible please contact me.

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