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.

Clinical trial options after Nivo/Ipi combo- any experience or recommendations

I am a daughter and caregiver from China. My mum(53) was diagnosed with mucosal melanoma last October, she had a surgery with clean margin to remove the tumor but it came back two months ago and we are under immunotherapy ( Nivolumab +Ipilimumab ) now.

Since my mum has low TMB and PD-L1 expression, there are high chances that the immunotherapy would not work for her. In fact, in the first one month treatment the liver mestastisis grew so quickly that we need to have surgery again to remove that. That is why now I want to search for suitable clinical trial for my mum globally.

Anyone else? Metastatic Melanoma - Mekanist+ Tafinlar+ Immunotherapy

Hi guys,

My father, a very active 45 year old, was recently diagnosed with Stage IV BRAF positive Metatstatic Melanoma with tumors in his neck and liver. His oncologist put him on Mekanist and Tafinlar about three weeks ago. When he went back for his checkup on Monday his tumors had grown and there were now new spots in his lungs, indicating that the medicine wasnt working quickly enough, but instead of taking him off of them, they've added immunotherepy to his old treatment. The pain in his liver is unbearable and he's starting to lose hope.

Patient Input Needed: Clinical Trial Design

As part of their Commitment to Patients and Caregivers, our partners at Novartis are working to make the clinical trial experience more patient-centric and widely accessible. To this goal, they are currently seeking melanoma patients who have participated in a clinical trial in the past two years and who are interested in serving on an advisory board.

Questions about recurrence in a WLE scar

I have three questions about recurrences in a WLE scar (on the thigh in this case).

1) When they redo the WLE, do they look at the depth of the recurrence and restage if necessary or does your staging stay the way it was?

2) Do they automatically check your lymph nodes even if they aren't swollen?

3) How is healing from a second WLE different from healing from the original? I had a tough time healing from the original with an infection, ripped internal stitches, and just generally slow healing. I'd like to know what to expect with a second one.

New pregnancy

It’s been a while since I’ve posted- and last time was after the loss of a pregnancy.  Well, we have (as of yesterday), safely hit the 12 week mark! My OBGYN. Has been great about me being able to come in every 2 weeks until 14 weeks to hear the heartbeat.

Financial Assistance

Hey all!

Question for anyone out there. Medical Bills! Another evil word! I have insurance. My husband and I make decent money. Obviously, getting my diagnosis last October 2017, having surgery, then having follow up after follow up and then starting treatment.....

How does one keep up on medical bills? I on hopefully on this treatment plan for only 1 year....

Any advice is greatly appreciated.

DVT and cancer

Monday’s are turning out to be hell. Last Monday I was hospitalized with colitis. The Monday before that, diagnosed with hyperthyroidism. Today. I went in because I had a pain in my leg, left calf, over the weekend and I said “with the way my lucks running this is definitely a blood clot.” Bingo. It is.

My doctor told me that it may not necessarily be a side effect of my treatment (ipi/nivo) or of the myriad medicines I’m on, She said DVTs are common in cancer patients.

Advice on discolored skin?

Hi. Sorry to be here when everyone is fighting hard battles but I’m having a minor episode and have no place to turn right now. I just noticed this tan oval on my back last week. I think I got a sunburn in that exact same area but it wasn’t just an oval burn it was a wider area. And at the end of May. Wouldn’t it have been gone by now? I was careful with sunscreen but some wore off and I did t reapply well enough