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.

I'm sad today

I'm thinking a lot today about the people I miss.  My brother passed away ten years ago on New Year's Eve (not from melanoma) and I lost both my MIL and my father this year.  Then I got to thinking about all of the special people on this board who we lost.  To the families of Josh, Adriana, Paul, Jamie, Shane, Juan, Charles, Julie's husband, Cberry's father, Cindy's daughter Kristine, Greg, JohnM, Annie's dad, Judy's Vince and all the other brave sould who lost their fight this year, know that your loved ones made an impact here.

ki67

which represents ki67 positive in approximately 15% of the melanocytic proliferation nuclei?

is high the value of 15%

HMB45 positive at the level of intraepidermic melanocytic proliferation means that the spread is only in the epidermis?

Positive scan results/oral blisters

Warriors All!

We received good news from the scan results following John’s first 90 days of treatment in a clinical trial combining Keytruda with SD-101 intratumoral injections. More on that below, but first a question …

Anyone ever heard of outbreaks of blisters on tongue/mouth as an immunotherapy side effect? John has had that reaction twice, both times 10 days after treatment. At least we think it's a reaction.

pregnancy

Hi! It’s been a while since I’ve posted on here.  I also just posted on MIF.  I know pregnancy has been discussed quite a bit- I’ve brought it up before on here too, but I just needed a space to share. I was diagnosed stage 3a in April 2014 when my daughter was 6 weeks old. My husband and i were hoping to grow our family. I’ve seen melanoma specialists— currently Dr Kendra at the James (Ohio State), and Dr coit initially after diagnosis (he performed my clnd- although he stated he would have been comfortable NOT doing it as well when looking at my tumor stats). Dr.

New SLNB post for PTgal and any others in need

Been meaning to put this post together for a bit and given your recent question, PTgal - thought you might find it valuable.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/12/sln-biopsy-delay-of-40-days-what-plus.html  

It covers rather new data looking at the timing of the SNLB if you choose to do it and the latest guidelines re SLNB generally.

Wishing you all my best.  Celeste

confused

what is the difference between melanoma in situ and stage 1a? In situ cancer cells are only in the epidermis and stage 1a cancer cells have entered the dermis? Is there a radial step 1a? or radial growth is only in situ?

Questions about palpable nodes

In the past 8 days, I have been on a rollercoaster ride. I got the official diagnosis of mm on 12/21/17. My initial reaction was "Melanoma? Ya don't say? Alrighty then, let's remove it." Since then I have learned too much. Melanoma is not just "skin cancer". This mess kills people. I am currently pathology staged as T1b, and I have bent myself into all sorts of shapes doing body checks. Having your husband walk in the bathroom seeing you naked with a hand mirror is just one of the multitude of no-shame moments I have had with that man. Bless his heart.

Cyber Knife for Melanoma

Soooo- four weeks ago a routine CT scan showed no old areas after 6 months of Taf/Mek. but it did show a new area on the side of DH's right lung. The oncologist wanted a Pet scan within two weeks. This showed and inconclusive area, so a needle biopsy was scheduled. At the same time they inserted a gold marker for targeted radiation.  The biopsy came back positive, and DH started the calibration process with the Cyber Knife.  CK is so accurate, and follows the gold marker even during breathing, cutting down on lung exposure of good tissues.

Words of encouragement needed

Hello all!

I first want to thank you all for all your posts over the last year and a half. This is my first post, but have been reading every day. 

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