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.

I'm very scared

I'm 40 and I got this diagnosis

initial histopathological diagnosis: melanoma in situ VS
melanoma t1a
Antibodies: KI67, HMB 45
KI67 positive in approximately 15% of the melanocytic proliferation nuclei
HMB45 positive intraepidermal melanocytic proliferation
size lesions 5mm, depth 0.6mm
final diagnosis: melanoma in situ radial growth phase , negative margins (tis NxMx)

is melanoma in situ or t1a?

Can pneumonitis be diagnosed with a chest exray?

Hey folks,

Quick question I hope - my sister is showing signs of pneumonitis and we managed to get into clinic today - her regular onc is off but substitute onc ordered a chest exray only and said it looked fine. Everything I've read on here suggests it's a CT scan used for imaging.

Still clear!

Well... After lounging in the mri/ct machines for three hours I got some good news. Still NED.  Been a year and a half. Off the juice (Keytruda) 14 months. Knees still a little pissy and aches slowly subsiding. Happy New Year to all. Hoping to hear lots of positive news from everyone in 2018!

Best, Paul

Getting screened for TIL trial

Things seem to be moving a little slower than I would like, but I got a call from the nurse at NIH today about getting screened for the TIL trial. She said the doctors there had looked over my scans and information, and they are concerned about whether my thyroid problem will disqualify me, but she said that "it's a very good sign" that they want me to come in for the full screening, which she is trying to set up for January 8 & 9.

Annoying Donate Banner Pop up

When I try to post the banner covers the page.  Anyone else have this happen?

3rd Petscan results

Hi, I have been reading but not posting.  Wanted to wait until i had news of my 3rd Petscan Dec 6h.2nd Petwscan on 9/11 was great.  The 6 tumors were either no longer visible or has really shrank.

3rd Petscan and most recent showed the original 6 still shrunk, but there are two new nodules.

Report reads-(FYI-FDG activity is the serum glucosa that glows where there is tumor activity.)

SLNB for newly diagnosed T1b?

I was diagnosed with melanoma last week, and of course I have Googled myself into a frenzy. I am well aware of the masses of outdated information online, especially when it comes to indications for SNB.

Lymph nodes

What do lymph nodes with melanoma feel like? Hard? Immovable? Or do they usually move? How big is bad? Thanks!!

All I want for Christmas is.....NED!

Merry Christmas Warriors! I pray that 2018 will find all of us on the road to NED status and for more innovative ways to battle the enemy. Stay in the fight and take time to be thankful for what we have...most importantly (for those who celebrate Christmas) remember the reason for the season.

If I could I have only one Christmas gift it would be a cure for this disease and we would all share in it! You are in my thoughts and prayers...Warrior on!

Your battle buddy,


Merry Christmas MRF Family!

Merry Christmas Everyone!  Hi everyone, hope yer all feelin' okay & surrounded by friends and or Family, or hell, even being alone sometimes is just fine haha...Man this Pembro is making me tired & "blah" as hell!, im gunna talk to my Onco when i see her, thank you Sister Of Patient & one other {i forgot yer name!} for some advice, maybe a good dose of steroids will lift my butt up! i try my best {and succeed} to not sleep during the day so my sleep at night is on regular schedule so, i dont know if i should be doing this or just sleep my life away?