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.

Is MEK combo resistant?

I have been on MEK combo for 16 months and my last scan was in April and showing regression of tumors. This past week I have been having low grade fever and body aches, I haven't had this but one time when I first started meds. The pharmacist said it was rare that people development side effects this late on the meds. Does anyone have any experience with this? Or if it stopped working for you, how did you find out. My next scan isn't until April and I am concerned we shouldn't wait that long. I appreciate any feedback you can offer.

Thinking of Eva

Eva, been thinking about you wondering what decision you made about treatment. If you see this, let us know how you are.

Annie

Newly diagnosed

Hi everyone. I am new to this forum. This week I was diagnosed with Melanoma after watching a very small change on my leg over some time. I am glad I got it checked out, as my GP didn't think it would come back as anything. My diansosis after the initial encision is Melanoma In Situ (no ulceration) supervening on active regressing compound melanocytic naevus. I was told this is good news as it is in situ. My concern is that on the report it states that the tumor was found in the top layer of the skin extending to the granular layer.

NRAS Positive and Molecular Targeted Therapy

My significant other has Stage IV melanoma which moved from the original location (his back) to his stomach.  The melanoma has only traveled to his stomach and has not metastisized to other areas.  He has been on an Opdivo and Yervoy regimen since April (he has gone through 5 rounds).  A PET scan was done a week ago which revealed there has been no improvement, so we need to look at other options for treatment.  He is NRAS positive and the oncologist recommends putting him on molecular targeted therapy, specifically a combination of Binimetinib and Trametinib.

update

I am just posting on here to give an update on what's going on in my world for anyone who may be wishing to read it.  As a reminder, I am on an ipi/nivo trial with a braf inhibitor arm to follow.  Shortly after my third infusion headaches began with my pituitary being compromised and developing vitiligo all over my arms.  4th treatment of infusions were cancelled with ipi probably being permanently off the list.  i understand this and am ok with it as I know I am stimulated.  Last night I visited with Dr. again and am up for my first scan next Thursday.

Immunotherapy with SRS

Hey folks, 

My wife has 4 brain mets and is about to get SRS next week for them at a major medical center.

Ipi+nivo eliminated all body and previous brain mets in 3 cycles, but these 4 new brain mets grew while on therapy. Bummer.

The question comes to what to do after the SRS.

I know of the data (thanks Celeste!) on nivo + SRS from the retrospective study from Moffitt released earlier this year. Basically, if you get Nivo within 4 weeks after SRS, outcomes are improved.

Newly diagnosed

This board has been a blessing. I was diagnosed with malignant melanoma 3 weeks ago from today. 

Mole on scalp

So here it goes.... I have this mole on my scalp,always had it, it was about the size of a sharpie marker tip, well about a week ago my wife noticed it was bigger...a lot bigger, and dark,black in color and raised, so I set up an appointment with a dermatologist,got in quick, next day actually. The derm looks at it measures it, he says about 8-9mm, then looks at me and says it's benign. He says it looks fine because the edges look good. That's it nothing more, I tried asking questions, didn't let me get a word in, by that time I was pretty frustrated.

Regional vs local metastisis

Hi

If your primary lesion is located on the left trunk and with a negative snlb on both sides, and your primary spreads to the right side lymph nodes is that considered a regional or local metastisis?

Thanks in advance.

Janis

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