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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JoshF's picture
Replies 12
Last reply 11/5/2015 - 5:58pm

The scan came back negative other than uptake in right shoulder. I'm an avid weightlifter and have had some issues with right shoulder and images showed it was in musculature structures so oncologist isn't concerned. It's been an ongoing issue...some times are better than others. Anyway that was a relief.

So plan is to move forward with surgery which I hope to set up ASAP. In the interim, my onc is looking at options. Again, the concerns are what all of us are aware when it comes to adjuvant measurable disease, efficacy and side effects. She wants to get best plan in place and will have something by month end....anyone know of any good trials?

Thank you everyone for your support and's nice to have a place like this where people support you, offer sound advice and simply just understand what you're going through. I'm very grateful to each and everyone of you who read, respond or just sympathize. I don't get very emotional but I about collapsed in exam room this afternoon. I just pray for the day where they can find a way to beat this back for advanced staged patients and not have it become the ball & chain it is. Yes, we go live life and enjoy everyday but it'd be so much nicer being a wee bit lighter!!!

Be well...check in soon.


Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 1
Last reply 11/5/2015 - 5:46pm
Replies by: Anonymous

My biopsy was sent to the pathologist.... and 9 days later i received word that the pathologist was sending my case out to a different pathology center for consultation...


Does anyone know why they would do this??


Proud Mommy to my little toddler. <3

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Anonymous's picture
Replies 1
Last reply 11/5/2015 - 5:06pm
Replies by: Patina

Because of my melanoma dx I had to have a chest x ray for some preop.  I'm hoping that someone can help me understand the results.  It's really unrealated to my melonama but so many of your are knowledgebgle in so many area's I'm hoping someone can help.


Findings:  Heart / Thoracic Aorta Medistinum and Hila all normal

Lungs and Pleura:  Hyperinflation.  Lung hyperlucency.  Question of subtle nodularity or artifact in the projection right anterior second rib 5mm at most in size.  Lungs otherwise clear, no pneumothorax.  No significant layering pleural effusions.

Osseous and chest wall structures:  Mild endplate osteophytes.  Mild dextrosocoliosis

Impression:  Underlying COPD


Question of subtle nodule versus artifact, superimposed structures right apex.  Lordotic View Advised.  Alternatively if high clincial concer, correlate with CT of the Chest.


Any insight would be appreciated.  I understand the COPD, although I do not have any symptons of COPD.  

:) Thanks

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Dear MPIP Community:

We are doing some research into support groups for patients diagnosed with rare subtypes of melanoma - ocular and mucosal. If you have been diagnosed with ocular or mucosal (including acral) melanoma and would like to help us, please fill out the survey HERE. It should take you less than 5 minutes to complete. Thank you in advance for your feedback!


Shelby - MRF


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Debbieamccoy's picture
Replies 2
Last reply 11/5/2015 - 10:44am
Replies by: chaseo, gregor913

Had a mole removed today and worried the derm doesn't think it's any thing but wanted to be safe. Still I'm worried it was quite small but she thought it felt spongy 

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DennysGirl's picture
Replies 11
Last reply 11/5/2015 - 2:21am

Soo, my hubby, (stage 4, mets in brain, spine, lungs, pelvis, ribs) was admitted to the hospital on Friday, Oct 23 for dehydration and malnutrition due to vomiting. After new act scan they found the tumor in his R lung had grown into his bronchi and was obstructing his breathing. He was then admitted into University of Wisconsin Health on Tuesday, Oct 27th. They did surgery cutting the cancer out of the bronchi and putting in a stent.  His breathing has gone from needing 6lpm to only 2lpm. We had an MRI and PET scan on Oct 14th at our local hospital.  The MRI had shown that the one brain met that he was diagnosed with in May had stayed the same....Fast forward to last week, here at UW, when they were filling him up with fluids..he started swelling up on the top half of his body. They did a new MRI on Oct 30th on his brain and chest and found a tumor in his chest is obstructing his Superior Vena Cava causing the swelling. As for the brain MRI they found that since his last one on the 14th he has had 7 more small tumors pop up and the original one that was a size of a pea on Oct 14 is now the sign of a ping pong ball. So they started radiation right away on his brain and on his chest. He had been doing really bad for the past few weeks and on Saturday the oncologist (melanoma specialist) here at UW told us that if things didn't improve by Tuesday that we should discuss hospice. Sunday there was improvement and today was huge improvement but the social worker came in and said the dr is still suggesting hospice. He is being discharged tomorrow. 

My husband is only 47 and other then the cancer a very healthy man, he has no other health issues.  I am torn---I feel like if he enters hospice then we are just giving up. If we fight and continue with chemo and radiation he may be able to extend his life a couple years possibly. 

Have any of you here ever had a dr suggest hospice... What was your decision....why? 

Renee~loving wife fighting for her hubby! 

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dodgedh2's picture
Replies 21
Last reply 11/4/2015 - 4:23pm

I was originally diagnosed at Stage 4 (met to bone) w/unknown primary. Following resection and gamma radiation treatment at surgery, I have been NED for just over 6 years now. My Onc released me from oncology and turned me over to PC for monitoring. No scans (unless I have symptoms or some other reason to suspect return). I'd like to hear from other long-term, late stage NED survivors. Has anyone experienced long-term NED then had recurrence? How long were you NED? Just going through one of those periodic anxiety moments about having survived Stage 4 and looking over my shoulder again.

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Replies by: jenny22, jamieth29, geriakt


Great news! This evening the FDA approved ipilimumab (Yervoy) as an adjuvant therapy for Stage III melanoma patients who have had their tumors removed through surgery.This is the first new adjuvant treatment in 20 years! The MRF issued a statement with more information, which you can read by following this link:


Lauren - MRF

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ashlee12's picture
Replies 8
Last reply 11/4/2015 - 2:16pm


I'm very depressed I'm only 22. I'm getting married next year and my life is over. I have cancer and I feel as if I'm dying. I was checking for other moles tonight and I feel as tho I have about 4 others that look the same... All I do is cry I feel like this is it.  
Derm told me not on scale yet for melanoma

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Christine.P's picture
Replies 8
Last reply 11/4/2015 - 12:55pm

I was diagnosed as stage IV just a week after the FDA approved the new Opdivo/Yervoy combination treatment. My insurance company - Bue Cross Blue Shield has denied the treatment. I was supposed to start treatment today and didn't find out about the denial until I was sitting in the waiting room. (Don't even get me started on how angry I was that they didn't call me to tel me before I got there. Have they no sense of the emotional and mental preparation it takes to get to the first treatment? And then they tell me to go home? I let them know this wasn't cool.)

Later my doctor called me and said it could help if I called the insurnce company too. So, I called them myself today to ask wny and first they said it was because I don't meet the critera and I said, "I am stage IV and have had no previous drug treatments - how can I not meet the criteria?" 

Then he said it was because the drugs were still experimental. I told him that wasn't true and that they had received the FDA report from my doctor to prove it. He told me we had to file an appeal and I told him my doctor had already done that. I then called my doctor back to let him know what BCBS said and he was also angry and said they would call again today. 

Because my appeal was marked expedited, I am supposed to hear in 72 hours if I win my appeal. If I don't, I will call again and demand to speak to someone higher up the chain. 

Has anyone fought Blue Cross and won? If so, how? 

Thanks, again, for your support and experience.


Christine P. 

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brittanyx's picture
Replies 1
Last reply 11/4/2015 - 8:30am
Replies by: geriakt

Hi, my name is Brittany, I'm 20 years old, and I was diagnosed with stage lll Melanoma last year. I created this topic for anyone who needs someone to talk to! 

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dfeng's picture
Replies 4
Last reply 11/4/2015 - 2:14am

It is being a long vacation that I am away from the keyboard and now I am back.


I am still in process of a long list of screen for the next trail, hopefully start on the end of November. 

It is still a kind of immunetherapy, but in early stage. I will have to be admitted to start the infusion, so that if anything is wrong they can do something quick. Kinds of sound scarly. 


If I remember it correctly, it is called anti-DC3. 

D. Feng

My record of progress on the first ipi/nivo trial is here:

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gregor913's picture
Replies 5
Last reply 11/4/2015 - 12:04am

Hi just received my pathology. Questions on a few.

Tumor infiltrating lycocytes brisk, present

Lymphatic invasion not identified

Perineul invasion not identified

Can somebody explain the importance to me and if they would affect a slnb. What does not identified mean?

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AshleyS's picture
Replies 3
Last reply 11/3/2015 - 5:31pm

Hey folks,

When I was diagnosed Stage IV in December of 2014, my doctors at Mayo Clinic in Rochester, MN put me on chemotherapy.  After doing my own  research and visiting MPIP, I switched my care to MD Anderson and found a melanoma specialist. 

My doc discussed many different treatment options with me. I had mets throughout my liver and subcutaneous tumors in 3 different locations. We decided I would go on the Ipi/Nivo combo (then) trial. We also decided to use TIL as a backup. 

On March 6 of this year I had surgery to harvest a tumor for future TIL use. It was successful and my melanoma cells are sitting in some lab in Texas in case I ever need it. 

However, the bill (over $4,000) is still circling among MD Anderson, Blue Cross Blue Shield, and us. Here are my questions:

1) Since it's MDA's research, should they pay for part. 

2) Since it is technically part of my long-term treatment, should BCBS pay?

3) Did we not ask the right questions at the time and now need to pay for this experimental Mopath procedure?

I'd appreciate any thoughts or advice. Right now I'm trying to decide if I should file a grievance letter with BCBS and MDA since the circling has come to a halt - it's no longer in the "pending" column on our insurance statement. We are coming up on one year and want to get it taken care of before it goes to collections. 



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dfeng's picture
Replies 9
Last reply 11/3/2015 - 2:48pm
Replies by: dfeng, _Paul_, Bubbles, Polymath, Scooby123, stars, Anonymous, Jubes, Mat

Have to move to other trials.

The combo doesn't really control the growing of tumors. 

I am waiting for the screen for another trial, it takes two weeks to check whether I am eligiable.



D. Feng

My record of progress on the first ipi/nivo trial is here:

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