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.

Tafinlar

3/4 Bottle Tafinlar to someone whom needs it even as a back-up. Can't watch it got to waste.

Help with trials and second opinions

I am researching places to go in the US for second opinions and what clinical trials I should consider and wondered if you kind, knowledgeable people might be able to assist.

The context is that I am stage 4, had 3 doses of ipi/nivo before stopping due to colitis. Initial response was good with 50% reduction of tumors. But after a couple of months of steroids/immune suppression, there has been some new tumor growth. 

Back home from surgery

So I am back home from surgery. Still recovering, and my neck is looking like something from a Frankenstein movie. I dont mind it, but they removet a tooth from my lower back jaw, and that really hurts. GOing back next friday to hear what they found in the removed tissue. They told me that they could not se anything else than one large lymph when doing the surgery, so I guess that is good news. They still tell me thet the surgery are going to heal me, and they tell me that it will not likely come back again, as there is no evidence of any melanoma spreading trough the blood system.

Where to send biopsy for second opinion

I was wondering if anyone knew of any good places to send biopsy slides for a second opinion? I asked my dermatologist's secretary and she acted like that was a very unusual request. I'm having a hard time finding anything useful when searching so any recommendations would be great.

Thanks!

Anti-LAG-3 Trial Post-Infusion 3 Report

Hello! I had my third infusion in the trial last Tuesday. I don't have much to report. Still not experiencing anything in the way of side effects, other than some occasional mild fatigue and a very mild rash on my upper chest.

diagnosis question

First, thank you for all the helpful and informative posts on this ebsite.  It has helped me become educated while I wait through diagnosis and start of treatment.

 

I recently had two moles biopsied through a shave biopsy at .5 cm x .4 by.1 cm deep (bisected?).

The nurse called me and advvised me to schedule surgery for melanoma with a general surgeon.  Today the surgeon shared my path report but not so much detail on diagnosis or prognosis, just surgery technique and standards.

Thyroid Is Normal

Got my TSH test from yesterday, it is back to normal where it usually is. Strange that it went high a couple of weeks ago. I guess my feeling extra fatigued and funky is just from the Nivo. Glad I don't have to start playing with hormone dosages. 

Free T3 and free T4 tests are also normal, they don't fluctuate much for me, always in the upper end of normal range.

Thanks for everyone's input on their own thyroid stuff :)

Technical Terminology in Path Report

I recently had a biopsy of a mole on my stomach.  I am scheduled for WLE on August 9.  The nurse told me that basically it was as close to a melanoma as it could be without being a melanoma.  After reading the path report, I am freaking out a bit because it pretty much says they can't exclude the possibility of it being a melanoma.  Any help deciphering the report would be greatly appreciated!!

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Diagnosis:

-Compound Dysplastic Nevus, Severe Atypia

-The lesion involves the deep and peripheral edges of the biopsy.

Good news with a twist

After my latest MRI and PET, all my lung mets have resolved.  I have no FDG Uptake in my lungs at all.  A half dozen doses of Keytruda after failing the Ipi/Nivo combo have paid off.  Also, the favorite phrase for all of us here, no new mets.  That phrase from the onc never gets old.

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