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.

7 months, still responding!

I just had my 11th cycle CT scan for the B-raf trial and I am still responding!  The 8th cycle CT scan showed stable disease so I was sure that this time it was going to show progression but instead it showed slight shrinking still!  Yahoo and Amen!   I am so ready to be done thinking about this for awhile.  My side effects have very minimal so I am feeling very healthy.  I DO have curly and thinning  hair now...

BRAF

Well i got to see Doc at Vanderbilt today.. i go next Monday for a pet scan to see if  mel has spread anywhere else in my body. then the following Monday i go for my 3rd biopsy to  see if i am BRAF positive. Then the Monday after that i go to get results. If i am Braf positive i will start my treatment 3 weeks after that.. if I'm not BRAF positive its back to the Interluekin2 in Memphis..quality or quantity of my life is my thoughts of that treatment. i haven't decided to do that yet.. my cancer is growing fast and the pain is getting worse by the day.

Update on me

Hi all,

When to start Interferon?

My husband TJ was dx with Stage 3b MM (amelanotic with unknown primary) in Nov.  We are waiting to hear

if he qualifies for the GSK DERMA clinical trail.  The process is taking much longer than expected.  We plan to 

start Interferon if he does not qualify.  Wondering what the optimal time frame is to start?  I thought I had heard

approx 70 days post dx (or maybe post op??).  He had the node removed on 11/4 and parotidectomy and SLND on 12/2.

Thanks 

Kelly

Hi, on my way back to the NIH...

The snowstorms actually have my flights canceled and I'm stuck in the Dallas Airport overnight. It's cold, uncomfortable, a little lonely... but a perfect time to check up and say hello to all of you.

Question about pathology report

Ok so even though its been 18 months, I still pour over my sons pathology report like I may find out something new...probaby the same reason I over-google and read the same articles over and over and over (neurotic mom?).

My question is, what is the difference between surgical pathology and immunohistochemistry ? One looks at the actual tumor and one the slides? Which would be more accurate?

Sons case was so unusual that it was send to 3 pathologists so I am just wondering...

Scans, all clear

I had PET/CT and MRI done on Thursday and saw my oncologist today for followup. I heard him say something I have never heard today. While he was recording his notes he said I was in 'complete remission'. And he told me I was a 'walking miracle', and, in a gesture completely unlike him, he HUGGED me when I left!

Immunotherapy and Vaccines

Here is a link to the Immunotherapy and Vaccines webinar with Dr Jedd W at Sloan Kettering from has last night

http://www.melanomaintl.org/news/Webinarx_Vaccines.html   if anyone wants to watch it

MEK Rash - any input?

Hi All,

My husband is on a trial of GSK MEk and P13k inhibitors and after 4 months he's developed a full body rash ( dermatitus) that is incredibly itchy.

They tried cortisone cream - didn't do much.

Now they have him on oral antibiotics and an antibiotic cream. Wondering if anyone else out has developed the rash and exactly what they're using to deal with it.

Wouldn't be so bad if it wasn't itchy! :-)

thanks in advance.

 

Emily

 

Stage 3a, 3 yrs NED, sudden onset of dizziness...need for concern?

Hi,

I'm looking for some reassurance. I am stage 3a, NED 3 years (almost)...I've been experiencing horrible bouts of dizziness lately, so bad that I can't drive at times. My family doc thinks its an inner ear infection (no symptoms of this present) and that I'm experiencing vertigo. I want to trust that is all that it is, but...you know how it is....is this something I should see my oncologist about?

 

Thanks for your responses.

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