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.

Scans today!

Hey Warriors,

Back down at MDA for my periodic scans today and another round of Pembro tomorrow. Scans will be resulted tomorrow so I'll update after I get some news. Hoping the PV-10/Keytruda combo has wiped out these last two nodes in my abdomen but proof will be in the pictures. 

Hope you are all warrioring well and kicking some Melanoma ass.


Local Recurrence

I recently had an extensive local recurrence located all inside of skin graft. This was removed by a 1cm wide excision which resulted in "close" margins. 7 weeks later i have a few tiny mealnoma dots outside of resction scar. They are right on the edge. I have stage 3b disease and am undergoing opdivo adjuvant just started i treatment. I stopped Keytruda clinical trial after developing type 1 diabetes and horrible arthritis. I also do not see a melanoma specialist (unfortunately) due to being unable to switch insurance at this time. I am in Kaiser system.

Opdivo going from 2wks to 4wks....

Hey all!!

So I just took treatment #6 as of Friday the 13th! Feeling the same as usual. Fatigue probaly for the first 12 hours or so and then I have been expierencing headaches every 3rd or 4th day after and they come and go for the 2 weeks. We skipped a couple of weeks ago, to "make sure" it was the medication.(brain mri was clean) Doctor wants to start the double dose for 30 minutes in 2 weeks. To be honest, I am very apprehensive about that, just due to the fact of the headaches that I have been having...

Any one have any input of this....Anyone else taking this...?!?!

Probably off-topic

Hello.  I don’t expect to get an answer here, but, who knows, maybe someone has some ideas.  Lots of knowledge floating around here.

Feedback/Input sought for stage 4 treatment next steps

Hi All -- my 40 yr old husband was diagnosed with Stage 4 Melanoma shortly after undergoing emergency surgery to remove a large brain tumor last May. He does posess the Wild type, genetic mutation that allows for BRAF. Subsequent IPI/NIVO immunotherapy (now just NIVO), brain and spinal radiation, BRAF, and an intestinal surgery has helped to end tumor growth and eradicate many tumors.

can this wait until June?

My husband was diagnosed with mucosal (anal) melanoma 4 weeks ago after a colorectal surgeon took out what was supposed to be a polyp but turned out to be 3 melanoma tumors.

He finally had a PET scan on Friday, and we will finally learn his stage at his oncologist appointment this week (though we know it is at least the worst level of stage 2, since there were 3 tumors and the largest was ulcerated and 11 mm deep).

Arizona Melanoma Specialist

Hi, I'm recently diagnosed and am having trouble finding an actual melanoma specialist in Arizona. Does anyone else live in this state and know of a good specialist?

Phase 1: Back from Mayo

Happy Sunday, everyone!

Well, I just got back from prostate surgery @ Mayo Phoenix, late last night. Phew! & soooo glad to finally be home. This past week has been about as difficult as any I've experienced, since my original melanoma diagnosis & surgeries. I must be getting old, LOL!

Anyway, the surgery was successfull & pathology reports clear margins ... yay! As long as I don't have any complications, I should be slowly recovering, over the next 2 months. Just in time for my next scheduled  scans @ MDA, in June ;-)

How long for immunotherapy to work?

My boyfriend had his first round of the ipi/nivo combo 9 days ago. We had to go back to the ER on Friday (1 week after the infusion) due to increasing shortness of breath; the doctors there did a CT scan and found that the lung lesions have grown even more since his last scan from the previous week (yeah ... my boyfriend's had at least one CT scan a week for the last month for various reasons).