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.

Yevoy + Keytruda combo

I am currently being BRAF-tested.  If the results are positive, my onologist will put me on taflinar + mekinist.  If I am negative, he mentioned an expanded access trial with yervoy + keytruda.  I have not been able to find out how anything on this trial or the combo of these drugs.  Any info would be very much appreciated.  Thank you!

Doc says no SNB if FISH test comes back negative

To date, my 8yo son has only had the mole on his scalp removed by the dermatoloist.  (Initial pathology yielded "spitzoid melanoma" - Clark IV, Breslow 2.1 mm, 3/mm mitotic rate).

 

Next, we're discussing the plan of action with Oncology/Plastic Surgery/Pathology.   They're tentatively scheduling surgery for Nov 7th.  Today, the Oncologist said if the FISH (fluorescence in situ hybridization) test comes back negative, they'll only do a re-excision.  If it's positive, they'll do the wide excision AND SNB.  They have a concensus that the tissue is "borderline" melanoma.  

Lisa13?

Does anyone remember "Lisa13" and/or know what happened to her?  I followed her posts when I was first diagnoses and then she disappeared.  Someone in the chat room thought that she may of passed but wasn't sure.  Just wondering.

Newbie - my 8-yr-old son Dx with Melanoma - tests in progress

We're in Illinois (Chicagoland).   Our 8-yr-old had a mole on his scalp, diagnosed as Melanoma.  (Stats 2.1 Breslow, Clark IV, 3/mm mitotic index).   Normal bloodwork, so we're optimistic.  Tomorrow, they'll confirm his surgery date/details.  Tentatively, they're planning to do a wide excision & SNB on Nov 7th.   I'll keep you posted.

Leptomeningeal Disease

2 weeks ago we found out my mom's melanoma has returned to her spinal fluid and ventricle of her brain (diagnosed via two separate spinal taps and brain MRI). She has a history of one large brain met, but had that gamma knifed and then a subsequent brain surgery a little over a year ago. Her doctor said she now has leptomeningeal disease, and we're waiting on scans (Fri: PET; Mon: spine MRI, brain MRI) to see if it's elsewhere in her body. Does anybody have anyone I could reach out to for help?? I've been searching through posts and, per other posters, have seen that Dr.

Phase II PV-10 Trial Results

Pretty strong results.  Hopefully well be seeing phase III trials soon.  Little disappointed to see that many who had a complete response had a recurrence later on but still strong results nonetheless.  Definitely see this as a player in the future with combinations.

http://www.forbes.com/sites/jonfortenbury/2014/10/29/a-new-cancer-drug-worked-in-over-50-of-patients-in-a-phase-ii-trial/

 

 

Surgery follow-up

Went to Dr. For follow-up after surgery. Said incision was healing fine. Pathology came back clear. All other tests were fine. Said I was ok, but  must be checked every  6 months, for melanoma can show up again at anytime.  So I felt good and hope to be cancer free for a long time.

:)

Immunotherapy Patient Forum

I mentioned I would post something after returning from the immunotherapy conference so here goes.  Sorry if it’s a little long but I know Joe will appreciate it ;).

Chat tonight 8 PM EST

HI Everyone

I hope some of you or all of you can come to chat tonight  Woudl love to meet you  Big Hugs,

Love and Light

Carole K

PS I am hoping some others from two other MM groups will come join us 

 

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