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.

Anal melanoma treatment

I am trying to get my father to find a new oncologist.  Can you please back me up on this.  Dad diagnosed end of Feb w a 5.6mm ulcerated anal melanoma mass.  Dermal mitoses at least 8 per sq mm.  T4b lesion.  I can find no record of checking any lymph nodes.  Oncologist (Dr Pecara) recommended PET/CT scan and MRI of brain.  They were clear in April.  He called it Stage IIb melanoma, Access c kit Nras if recurs and follow expectantly.  In August he had a check up, no scan and asked for a PET CT scan before next visit.

Mucosal Melanoma and Radiation

My father was just diagnosed in July with MM of the nasal passage.  He went through 3 surgeries to try to get to clear margins, unsuccessfully.  He is now undergoing radiation (6.5 weeks, five times per week).  He is three weeks in and the side effects are so brutal they might have to stop the treatment.  He has severe swelling, sores and bleeding in his mouth, nose and lips.  He has lost 15 pounds so far and is unable to eat other than Ensure and even that is becoming difficult.  We are afraid he will choke to death in his sleep from the swelling of his mouth and throat.  His radiation doc

New to forum and new melanoma patient

I was dx with metastatic melanoma just a few weeks ago.  Subungual melanoma under my big toe and metastatic melanoma in 2 groin lymph nodes.  Going in for surgery jan 13th to remove the toe and all lymph nodes in my left groin.  I see so many confusing information regarding treatment.  

Has anyone here or anyone know anyone who refused treatments and just continued to watch and scan?  Has anyone gone through a treatment that had minimal side effects?  And what are the abbreviation mean- N.E.D,  post WLE, TIL therapy?

radiation and anti-PD1...a good thing...for Artie!!!!

Thought many of you would appreciate this information regarding the positive synergistic effects of radiation and anti-PD1.  Here is a synopsis an article just out:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/srs-combined-with-anti-pd1-makes-things.html

Nurse says I am stage 4 before PET scan results .....PLEASE HELP ME

 I had a 1.3mm melanoma with no clear margins removed from my left inner thigh area  I go to the Melanoma and Breast cancer center after my dermatologist refers me to them and then find out that the nurses giving me the info are not practitioners . I can not understand how having a microscopic ,encapsulated cell in my sentinel node and the other node was clear makes me a stage 4. She told me that if it was found in any of the 2 they removed she would have to move me from a stage 1b to a stage 4 This was before the pet scan was done !!!. I had a pet scan done on Dec.

Are all anal melanomas considered mucosal?

I'm getting small bits of information from my mother regarding my father's diagnosis.  His melanoma is now in his lungs so we are waiting on pathology so they can come up w a treatment plan.  Is there a separate support group for ano-rectal melanomas?

Thank you.

 

Does anyone know how Mark1101 is doing?

Does anyone know how Mark is doing?  He was from Ohio near Akron and was going for a different treatment but I haven't seen a posting from him in a long time and was wondering how he is.

Judy (loving wife of Gene - Stage IV and now NED)

Scared about middle and upper back pain

Hello,

I am a Stage 1b patient 10.5 years post diagnosis. About 2 weeks I am having annoying migrating pain in my middle/upper back. It is less prominent in the morning, getiing worse in the evening, and is better/no pain at night.  I may have it between shoulder blades, so I want to streach, then it can move and throb in scapular area, moving to side rib. I can feel from time to time tension/spasm in the upper part. It is not stayng in one spot, but moves around, although sometimes is more prolonged close to medial border of scapular.

Are all stage IIIBs created equal?

Hi All-I promised myself I would try and take a break and not read so much, but i am having a particulary bad afternoon today.

As I am preparing for another surgery, and then a decision for next setps I find myself reading, and reading and reading....

I am most likley going to participate in a Vaccine trial.  But its so scary and disconcerting to read from some that vaccine trials havent really wokred, nor whons any clear data....only other options are Interfeon or IPI, whcih i am not sure about.

side effects to IPI - can they start immediately?

My husband just had his first IPI (Yervoy) infusion yesterday.  They told him that side effects wouldn't happen for 3 or 4 weeks, but today he has slight flu like symptoms, enough to keep him in bed and no appetite. Maybe he caught a bug from his salad lunch at a restaurant yesterday or dinner, but it seemed like such a coincidence to be one day after treatment, that it seems like it has to be from treatment. When we called the dr office, they were doubtful it could be from the treatment.  Anybody else have side effects within the first day or two of first Yervoy treatment?

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