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.

My husband

My husband has been complaining of itching at the excision site & also says its sore...Should we be concerned about this? He was basically turned loose so don't know who to ask. Thanks Linda

Starting IL-2

Hi everyone.  I sure enjoy reading all the posts and gleening all this helpful information.   This board gives me encouragement and hope.  I have failed GSK BRAF/MEK and now will try IL-2 starting on Monday.  Who was it on this board that is NED after IL-2 and had a lot of helpful advice on how to get through it, what to take to the hospital, etc...??  I would sure appreciate their email.  I can't seem to find the post.   Thank you for responding!  Keep on keeping on.

 

Marian

scalp re-section - NO post anesthesia nausea!

Hi y'all,

Hoping and praying no one else faces a scalp re-section. That being said, I wanted to post that my surgery took 6 hours, 2 surgeons (plastic and oncologist), 2 anesthesiologists and I had an AWESOME outcome.

I insisted on some sort of anti-nausea drug. There's nothing worse than puking for days after surgery! My plastic surgeon prescribed Emends 40 mg, 3-4 hours pre-op with just a sip of water. I also had Compazine (suppository) and will ask for the same 2 again if I need any further surgeries.

Changes in immune system?

I am 5 months NED after finding melanoma in a lymph node in my left posterior neck. We never found a primary, and I had a left posterior neck lymphadenectomy (36 nodes out) last December. So far so good.
Last September, my noise started running. This problem has gotten worse over time, to the point where I have a pretty much permanent post-nasal drip, hacking cough, and can't get more than 4-5 hours sleep at once (not a good way to fight cancer!). My ONC is fairly sure thue problem isn't allergies, but cannot offer much help on what it is.

freaking out again

Hello Everyone,

I was doing OK with my initial diagnosis of metastic melanoma until i went to see the new ONC...she told me pathology isn't 100percent sure on melanoma diagnosis and leaning towards something called clear cell sarcoma or soft tissue melanoma....so what did i do? yup...researched on the internet...and now, i am in a PANIC...there are NO GOOD EXISTING TREATMENTS FOR THIS...rare, rare, rare...poor prognosis...

GI oncologist

I've been having stomach pains and had an ultra sound by a local Doctor.  It showed possible calcification of the gallbladder or stones that had adhered to the gallbladder. He set me up with a local surgeon. Meanwhile I sent a copy of the scans to my melanoma specialist to compare.

Financial assistance

Hi, everyone

I am a writer working on an article for oncology practices, to encourage them to have someone at the office who helps patients understand how much their insurance will pay and tell them about assistance programs available if they need them for their out-of-pocket portion.

BRAF/MEK fever/chills Advice???

My husband is starting his fifth week of GSK's  Braf/Mek trial.  The only side effects he has had prior to now are a fever and chills occurring 4 hours after his dose and lasting about two hours.  This did not occur every day, and when it did, it was with varying degrees of intensity.

For the last 24 hours, he has had continuing fever and chills.  Sometimes the fever breaks for a short while, but returns.  My husband is afraid to call the doctor about this for fear of being taken off the trial, which otherswise seems to be working.

Complete responder!!! No surgery!!!

My husband and I got down to Albuquerque this morning expecting to do the whole round of pre-surgical exams, tests and interviews. Instead, we got my medical and surgical oncs coming in to do the doctor version of the Good News Happy Dance!!! The brain MRI and PET/CT scans done on the 13th say,.."No evidence of metastatic disease." !!! Everything is completely clear on both the brain MRI and the full body scans...even the little oddball things they were watching are gone.

Pages