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.

Now have 15 brain tumors and starting Keytruda

I suffered two seizures on February 22. I have completed Yervoy February 5 they believe the Yervoy may have caused a flare of these tumors. These brain tumors have all occurred since November. I am now going to be starting Keytruda on Thursday March 5. 

Has anyone else had similar issues and if so what kind of success have you had with Keytruda and how quickly?

Kim Wright

There is hope

Hello everyone,

It has been a very long time since I have visited this site but I figured it was time to swing by and post something that should give people so hope just like many of the post I read.

Yervoy Side Effects After Treatment

I finished the treatment course with Yervoy in January. Went back for a post treatment scan a week ago, and the results are encouraging. Several questionable areas, including one on a lung, that were new in November, but weren't "hot" on the PET scan, are unchanged, and still not hot. I do have one area that was mildly hot ("warm" my oncologist called it) with an SUV of 3.03, on my back.

Got a plan...sort of

Hi there Friends!

Well, I saw my Rock Star Doc today and he confirmed it; melanoma is back.  It's still small but it's growing (from rice grain to pea size is 3 weeks.

So, the plan is: Full set of scans (PET/CT MRI Brain) next week Wed  to see if it's gone anywhere else.and following that, Keytruda.

Update on my protocol

I have been very hesitant in posting this since so many people are facing real uphill battles with this nasty disease but I would like to share a message of  hope for anyone who might need it  that it is possible to overcome this cancer against all odds.

Phase I trial of PAC-1

This article came across my feed and sounded interesting so I looked for the trial.  Melanoma is one of the cancers they are accepting for the trial.  Doesn't say brain mets are a disqualifier and they think it will work on brain mets.  Phase I so you're definitely a "rattie" if you choose this trial but if I was a non-responder to Ipi or PD-1 I'd definitely consider it.  Looks like it's only in Chicago right now.

http://medicalxpress.com/news/2015-02-cancer-drug-pet-dogs-human.html

ADVICE PLEASE

I have melanoma mets in both lungs and in the bones through out my body ( lots in hips and spine and ribs). I have tried IL2 (no response) Braf Combo ( worked for about 3 months) and IPI ( no response) and now am doing PD1 which seems to not be working as well.... What drugs and treatments are out there and should be on my list to try? Any help in this matter would be so appreciated. I live in the US east coast.

 

Thank You

need stage IV melanoma advice

hello

my wife had her second infusion of Keytruda the anti PD1 by Merck after failing Yervoy, we are expecting to have low response due to the large sizes of the tumors but this is our last hope after doing chemo and radiation for the brain and being negative on BRAF, has any one been on this treatment to share his experience and inform us with the side effects.

Is there a healthy way I can gain weight?

Back in 2013 when this all started I changed my diet to more natural non processed stuff. I attribute a lot of my weight loss to that. No matter what I ate though I never have been able to regain weight loss.

update on Pete

Hi everyone

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