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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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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jenny22's picture
Replies 5
Last reply 11/3/2015 - 1:43pm

Hi All-

Just as I was approaching the ONE YEAR mark from my first recurrence....coming up around NOV. 15th.....On Saturday evening I felt a little "bump" just above, but right near the incision....It looked and felt completely  different from the first one, which was hard....this one was soft and "squishy", so I was hopeful it may have been something else.

First phone call  Monday morning was to my wonderful DOC, Anna Pavlick's office.....they said to come in  as soon as i could get soon as she felt it she said it could be 50/50 and sent me upstairs for an FNA, they had the results by the time i got back to her office and it was positive for Melanoma, so my hopes of it being nothing were now gone.....She simultaneously set up CT scans for Head, neck, chest, abdomen and pelvis that same afternoon.....I got home at around 7 pm, and at 8:45 Dr. Pavlick called to tell me they didn't  have the NECK report back yet, but all others were CLEAN....such incredible still waiting to hear  results from neck scan today.  SUCH  AN AMAZING DOCTOR AND PRACTICE,  unthinkable to have had all that done in one day, at a major NYC institution....I am now scheduled for tomorrow to see Dr. Coit and MSK who had done all my past surgeries...and hoping NECK scan wont show anything more than this new 5mm "bump"...

OK, so now on to my question...Dr. Pavlick thinks we should now do radiation this time, as this is 2nd recurrence in same place, first one was last year almost same  time (I'm starting to HATE NOV/DEC....)  Her WORDS; she wants to "sterilize that neck area"

I asked about doing IPI, especially now that its been approved in the adjuvant setting...she isnt in favor of that as thinks it still very small stuff, and toxity profile so high with IPI....also noting i did VACCINE trial at NYU this past spring, and had severe reaction at last treatment, and ended up with diahhrea and microscopic colitis for 2 months after the last injection, so she is afraid i'd end up in the hosiptal with IPI....

I am just worried now, about when it is going to end up elsewhere....

She is still so encouraging, and said this doesnt change my prognosis.....but still so scary.

As Josh says, "this shit is unreal".

Any thoughts anyone?

Thanks ofr any input.



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jas02r's picture
Replies 11
Last reply 11/2/2015 - 11:38pm

On August 15th my dad found out he had stage IV melanoma that started on his scalp as a small lesion that grew to about half the size of a gold ball. He also had major liver involvement, hip, thigh, rib and skull bone activity, he also had lymphnode involvement behind the small intestines and small nodules in both lungs. Fast forward to this past week where he endured several scans and a surgery to repair a ruptured ulcer we found out he also had several brain mets that were bleeding that had not been there on the MRI 3 months earlier.

The only treatment my dad was able to receive during his short battle was 2 rounds of Opdivo which caused server liver toxicity so his oncologist had to end treatment. The next option was the BRAF combo but he had tested positive for V600R gene and caremark initially denied the meds but with the help of Dr Sosman and his regular oncologist they finally agreed last Friday to approve them for him but unfortunately it was too late. His body was just too weak for anymore treatment, he hadn't eaten or drank much at all in ten days and the brain mets had bled causing him to lose his speech for a day until the meds were able to shrink the swelling of his brain. His speech returned which we were so grateful for so we could communicate in his last days but it was clear the end was near.

We started palliative care yesterday around 9am and my dear dad passed at 1:48 pm Oct, 22 2015. He fought hard but just couldn't win this battle. I now know more about melanoma than I care to and wanted to thank everyone on this form for all the hope, inspiration and info you've provided over the past several months. My hopes prayers are with each of you fighting this nasty disease.

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scmcelroy's picture
Replies 5
Last reply 11/2/2015 - 11:24pm

God is in the business of Miracles! Many may remember my post several months ago. I was diagnosed with melanoma skin cancer on my nostril of my nose. I had went for a skin screening and the Dr saw something that I honestly never could actually see. She did a biopsy and the thing she thought might be Basel cell was nothing more than fibroid tissue. However she said the biopsy showed Melanoma in-situ.  The Dr wanted to do MOHS surgery,but with Melanoma they would have to send the tissue off overnight and come back the next day (day after day) and have cells removed until it showed cleared margins. I asked if there was anywhere that could do it all in one day and they directed my to a University in NC. I went down there the first of September with intentions of having a consult and the go directly in surgery. That Dr traumatized me with his plan of action. At a minimum, he was going to take my left nostril off and have to remove cartilage from my ear to repair the lost of cartilage and then cut from my nose to the edge of my mouth to do what i found out to be a flap graft. His exact words to me was "I was going to have a "wiener" on the side of my face for a month until they did reconstructive surgery. (After research I found out that this would have been a flap that resembled the size of one of the small cocktail wieners.) Needless to say, I lost it at that point. I couldn't comprehend anything else he had to say. We left his office without having surgery. I have been an emotional wreck since then. I actually had been considering doing nothing, especially since I couldn't see it and it was in the very early stage. My thought process was it may never do anything why would I butcher myself up for this. I started to do a lot of research and blogging and could not find one single person who would agree with me. I scheduled an appointment with my family doctor and he referred me to UVA. I went last Friday for a consult and this dr assured me that he could do the surgery with minimum damage. My surgery was scheduled for this coming Monday, Oct 26 to remove the cancer and then go back a week later to repair the hole that was left. I think I was finally at peace with this decision. Today a very close friend of mine at work told me that he knew I was going to be alright. He had awoke early Saturday morning to a piece of mind that I would be fine. Awaking like this was something he never did. I knew God had spoke to him and it gave me even more peace about the surgery. Wouldn't you know it, 30 minutes after my conversation with my friend I received a phone call from a UVA dr stating that they had reviewed my previous biopsy report (which had been reviewed by 3 other pathologist elsewhere) and they did not see any Melanoma. He called it something else - some long name, but he definitely said it was NOT malignant melanoma. I made him repeat his self to make sure I was understanding him correctly. They however want me to come back Wednesday and do a "punch" biopsy where they will take a small core from the area to check again. No Dr that I have seen would do another biopsy on the area because they were afraid it would get in my blood system. People are questioning how the biopsy could be wrong after so many had looked at it. I just know that the love that GOD has for me (someone not deserving) is beyond being able to understand and I am ok with that. I still need prayers because the devil is trying to make me question this upcoming biopsy. I know there is power in numbers and I know our God is an awesome GOD.  So I'm sorry to be so long winded but I have to let you all know that God is in the business of miracles!



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JoshF's picture
Replies 20
Last reply 11/2/2015 - 10:03pm

Don't have path in front of me but got call earlier from derm. Approx. a 4mm well circuscribed nodlue of melanoma. Stained positive for Melan-A, negative for HMB-45....doesn't appear to be a lymphnode. Lymphocytes present....whatever that means. But basiclly said it's a sub-q metastatic leison. He sent path to oncologist. I'm seeing  oncologist tomorrow....don't think I'll be doing scan tomorrow but I know the drill....just hoping it's just a dermal leison and hasn't spread anywhere else since I had last PET 3 months ago....

This shit is unreal...



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

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gregor913's picture
Replies 17
Last reply 11/2/2015 - 8:48pm

I was just recently diagnosed with malignant melanoma on Oct 29, 2015 and I am 34 years old male. I originally went in to have a mole looked at because after taking a shower I dried off and my wife noticed the mole was bleeding. I made a appointment a few weeks later and told the doctor about it. He examined me and said its probaly nothing but we will remove it anyway because your light skinned with blue eyes.

A week later the doctor called and told me to come in the office. Thats when he dropped the bombshell and I felt so many emotions and feelings going through my head I cried. He said that the pathology report was abnormal and melanoma cells were found in the tumor. He said it was ulcerated and had a breslow thickness of 1.7mm. He also said the margins were negative but I would probaly have to do a wider encision and other tests to see if it has spread to my lymph nodes. Once I heard that It really freaked me out.

He classified me as moderate melanoma and referred me to a oncologist but said he spoke to the oncologist and hes confident he can treat it. Ive been doing alot of reading and I would classify myself as a 2a right now depending the results of the snlb. Im just really scared because of the ulcerated part. Has there ever been a patient who was ulcerated and it did not spread? Is 1.7 a very deep thickness? Does negative margins effect anything? 

I have not had any side effects and my wife has been doing daily feelings of my armpit, neck, and collarbone. I have not felt any hard lymph nodes that would show my body is fighting something.


Thanks for taking the time to read this. My first appointment is Monday November 2.




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Christine.P's picture
Replies 8
Last reply 11/2/2015 - 7:35pm

Many people have posted here about the rash and itching that comes from the Opdivo/Yervoy treatment. Any advice on brands of lotions and soap/body wash that can help?  I start my treatment Monday and would like to have a few remedies in place in case I need something to tide me over until the docs can get me a prescription, etc. 

Any other tips on side effect relief will be greatly appreciated as well...

Thank you!


Christine P. 

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1derdog's picture
Replies 8
Last reply 11/2/2015 - 10:24am

My husband had two Keytruda infusions & his tumor near his pancreas increased. He had another four infusions & his scan showed stability, with a slight decrease & no spread anywhere else.  

My question is is this good progress after six treatments. His oncologist thinks the sweet spot for Keytruda to work is around 10 - 12.  I would appreciate any of your personal experiences and/or opinion.  

Thus board is a heaven sent.  

Thank you

caregiver (wife

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Debbieamccoy's picture
Replies 3
Last reply 11/2/2015 - 10:10am

I'm stage 4 with mets to liver getting yervoy and nivo second round next week. I want to plan a surprise trip to Disney for my children and grandchildren but afraid to plan ahead for April . So far I feel great except for nausea . Anybody with suggestions 

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chrisholder's picture
Replies 2
Last reply 11/1/2015 - 11:11pm
Replies by: kylez, Gene_S

Hello, All,

I am Chris, a 68 year old married male musician living in western upstate NY & brand new to this site.  Diagnosed with mucosal melanoma in the maxillary sinus six months ago in May and quickly joined an expanded access c. trial at Dana Farber in Boston with the Ipi/Nivo dual infusion therapy.  Severe side effects (esp. thyroiditis and hepatitis) forced me out after only two infusions requiring me to spend the rest of the summer recovering from the s. effects.  Began a new course of Pembrolizumab (Keytruda) in Sept and hope this will show some positive results eventually.  Would be interested to hear stories from other m. melanoma patients about their treatments, progress and outlook.  Thanks in advance for welcoming me in here!   

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