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.

Spread to spinal fluid-leptomeningeal

Hello dear MRF community, I'm new to posting here. I was diagnosed with Stage 4 in May. First presented mets in breasts. After 4 rounds of Keytruda, it spread to spinal fluid. I then went on BRAF combo, which I couldn't tolerate (ongoing fevers). Next was radiation. And this coming week I'll start the other BRAF combo. Just wondering if anyone else is dealing with the spinal fluid ("leptomeningeal") and it's complications. Thanks. 

Dimensions in scans?

Scans (CT or MRI) usually show two dimensions for a tumor. Is it possible that a tumor would be changing in the z-axis and the scan wouldn’t report it?

Bleeding mole

Hi all,

Just looking for any similar experiences (and, to be honest, some reassurance).

Yesterday I went for a run, then came home and took a shower. While drying my hair I noticed a mole on my left arm, just above my elbow, was bleeding. I was diagnosed with Stage Ib in April 2016 (a very thin melanoma) and had a WLE at that time.

I live in London, where the health system moves very slowly, but I did get an appointment with my GP this morning. He admitted he is no expert in melanoma and because it had been bleeding it was inflamed and hard to get a good look at.

I Am Heartbroken

I'm sad and heartbroken to report that last Sunday, I lost my soul mate, father of my children, and love of my life from this horrible disease.  He fought for almost 7 years, 5 1/2 of those stage IV. Most of those years he was asymptotic until this past August when the beast came back very aggressive in his omentum and small intestine. He was on Taf/Mek for exactly 3 months when the beast reappeared even more aggressive and this time he developed malignant ascites in addition to the tumor regrowth in his intestines and peritoneum. The next step was ipi/nivo which he had 1 round.

How long....

  After 3 rounds of the opdivo-yervoy  treatment ( stage four)  my husband had to stop because of side effects. He was hospitalized for five days and taken off treatment until he gained some strength and weight back. He also was given steroids. When he returned for a scan three months after his hospital stay all tumors were still shrinking. No treatment was continued.

He returned for a scan this week and all tumors continue to shrink.

Nodular Melanoma in 2015, now a new mole...

My husband is considered stage 1a today, no lymph node  involvement when diagnosed with nodular Melanoma back in 2015. Just recently we noticed a new mole, in the same general area of the previous melanoma (shoulder). We've also just recently moved and are now in the process of getting new doctors. His new primary noticed the mole too and said it needed to be checked further by a dermatologist due to its asymmetrical look and that it's quite dark in places  - apt all set.

keytruda to Opdivo

After a recent change of insurance companies in November, my infusions of Keytruda are no longer being covered. My Dr is switching me to Opdivo, which I've been told is very similar to Keytruda. I'm not thrilled about the change, partly because I'll be having infusions more frequently and I'm trying to maintain my job as a 3rd grade teacher.  Has anyone else experienced this transition?

NEWLY DIAGNOSED WITH MELANOMA

My Dad was just diagnosed with Melanoma.  His breslow depth is 1.1mm on the helix of his ear. Mitotic rate <1mm2. He is 57 years old.  He is scheduled for SLNB Jan 2, 2018 and MOHS surgery Jan 10, 2017.  Please ask for more information if you need it.

I am wondering if it is a high chance that it spread to his lymph nodes?  From what I am reading, it seems like a low chance, but I am just looking for more information, so I know what to expect.  Hoping for good news.  I know the waiting is hard, just looking for hope.

 

Thank you

Is this subungual melanoma?

I'm a 20 year old Asian male. Three days ago, I noticed a single very faint brown line on my right index finger. Its width is probably 1 mm. Its very faint that when you look at it at different angles, it seems that it disappears. I also noticed a super slight ridge (I'm not sure how to call it) on top of this discoloration. However whenever I put a bright light underneath my index finger, I can't see any discoloration/dark spot/line both on the nail itself and the cuticle.

 

Changes in the eighth edition AJCC Cancer Staging Manual

http://onlinelibrary.wiley.com/doi/10.3322/caac.21409/full/

 

1) tumor thickness measurements to be recorded to the nearest 0.1 mm, not 0.01 mm;

2) definitions of T1a and T1b are revised (T1a, <0.8 mm without ulceration; T1b, 0.8-1.0 mm with or without ulceration or <0.8 mm with ulceration), with mitotic rate no longer a T category criterion;

3) pathological (but not clinical) stage IA is revised to include T1b N0 M0 (formerly pathologic stage IB);

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