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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Nell's picture
Replies 3
Last reply 11/6/2015 - 12:09pm

Has anyone had ankle swelling on these drugs? Is this something to be concerned over? Thanks for the input.     Nell

One voice can make a song; one life can change the world.

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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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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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Anonymous's picture
Replies 14
Last reply 11/5/2015 - 6:04pm
Replies by: Janner, kdhill, stars, chaseo, Anonymous, Christine.P, geriakt

So I was referred yesterday by my doctor since I noticed a mole on the left side of my foot, don't remember if I had it for awhile or not since it's not a area i look at all the time plus my memory isn't that great. My sister thought it's been there but Im not sure. The doctor said the color was too black which made her want me to get seen and the borders weren't sharp plus it was asymmetric. I put up the picture since I really don't know. It was measured at 2mm. I'm seeing the dermatologist on wednesday, but i'm still scared now and freaked out. I'm 26 and of asian indian descent. 

What factor does color play into a melanoma diagnosis? Is darker usually an indicator? If it is melanoma is the fact that it's super small in diameter good for potential staging if it unfortunately a cancer? I don't sunbathe either or tan, no one in my family has had melanoma from what i know. My dad does have lupus with a possibly cyst on his kidney and my mom had a stage 1 pineal gland tumor that was removed for a family background. 

Is the fact that it is relatively small 2mm mean anything or are there there situations where it is small, but penetrates deep?

If this is inappropriate to post I do apologize I was just hoping to get some information from people who have experienced this similar situation since my PCP was not very helpful at all at answering any of these questions

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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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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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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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Momofjake's picture
Replies 8
Last reply 11/6/2015 - 10:00am

Hi there friends,

i have missed you but it's always good for us to take a little cancer break if we are so lucky to be able to! If you remember my 18yr old son Jake is stage 4. He has mets everywhere but brain. He has had 7 treatments and has scans again Nov 19. His last scans showed major improvement in bones, spine, skin, femurs etc. stable and less active in lungs and liver. One new tumor in his chest. Overall we were happy! Jake looks really good! I really thought I would lose him in June....but keytruda....a miracle right?!? He only has fatigue and is back at life mostly. His treatment was TH and I just got labs posted online. His LDH tumor marker was up. His highest while growing rumors like crazy was 180. It's been way down the last few months but popped back up to 161 this week. Should I care? I haven't told him. He is 18. He can look if he wants. But really he just wants to live his life. Never ever do we talk cancer!! 

Jake did just start a charitable foundation. It's called "Jake's Hope". He is going to give mini wishes to cancer kids! All his deal. He is doing a few other things too. Finding his voice just a little. Happy mom:) Glad to hear some of my old favorites in hear still okay! Prayers, love and lots of pure toughness shared here!! Thank you! And all you new peeps, welcome! This will be a really important place in your life. 

Kerri--mom of Jake

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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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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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5dives's picture
Replies 35
Last reply 11/19/2015 - 9:52am

Hello all, 

I am currently stage 3b (T1bN1aM0) and have been recurrence free since July 2014. Hooray! 

I see my oncologist at Loyola Medical Center in Chicago and have an oncologist at Memorial Sloan Kettering in New York. 

Both of those doctors advised me against having a complete lymph node dissection because my one node was *only* micro positive for melanoma and both of them felt having lymph nodes is more important for long-term health than having them out when the risk of spread is low. This decision made me nervous, but I decided to go along with it, and I'm still solid about it. 

I did not have interferon because (again) both doctors felt that the side effect profile of interferon and the low probability that it increases survival made it not a good choice for me. 

Now...enter Yervoy. 

I have been NED for 16 months with no treatment beyond WLE / SLNB. I am seeing a dermatologist every 3 months and the oncologist every 4 months. 

Can you all tell me how you're going about deciding whether or not to do adjuvant Yervoy? 

I'd really appreciate hearing your thought process on this big decision. 



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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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Jubes's picture
Replies 5
Last reply 11/1/2015 - 3:08pm
Replies by: Jubes, Anonymous, Bubbles

Hi all

Just a quick update on my poly myalgia type side effects that caused me to stop Pembro in August. The rheumatologist and oncologist have decided to treat the symptoms as much as possible before giving me the big guns ( infliximab which reverses the effects of Pembro, though so far from a small sample of ppl treated with that for life threatening colitis it has not affected the benefits of the checkpoint inhibitors) 

So i am continuing on 25 mg prednisone every  day and have been taking 200 mg slow release ketoprofen every day along with regular Panadol  osteo. I am still very stiff and sore but the pain had gone from a 10, where I was virtually paralysed in the mornings for up to three hours, to about a 6-7, where I can get up and enjoy my life but a long way from working, yoga or playing golf!

the next step will be this week now they have checked my eyes and other bloods, they will put me on plaquenil and try to gradually wean me off the steroids that I have been on since May. 

My next pet is in December so I think they want to try all those things and make sure disease has not progressed before they risk infliximab as it was still 3 cm in my lungs stable in August from January 

hope this helps if anyone has similar problems


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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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