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.

IIIA - 8.5 years NED

Hi,

Wanting to share the good news with those of you who might be just starting this scary journey with melanoma.  My husband had his semi-annual onco appointment yesterday and got the fantastic news that he remans NED.  Still seeing a little hypodensity on his liver, but it's been stable for at least 2 years now, so not a concern.

Finished Round 6 Bio-Chemo 70 to 80% tumor reduction

Had scan CT scan results today. There was a 70 to 80% reduction in overall tumor size from 1st Bio-Chemo round started in March 2010.

Starting treatment

Today we got the results that my husband is positive for the BRAV600E mutation and is so far eligible for the Roche trial.  Tomorrow he goes in for scans and blood work then if he passes, he'll get randomized next week.  This is such a relief since he has numerous subcutaneous mets in his throat, face and neck which is causing him to be in pretty severe pain.  I am so happy that he can start getting some treatment - even if it is dacarbazine, since he has been feeling these tumors since April and we've been told they are inoperable in the beginning of July.  Wait

Calling all Sorafenib/Nexavar users-Past and Present

Hi,

I posted last week and was hoping to get a few more replies.  Posted above and James from Sydney suggested that I post with sorafenib in the subject--that it might attract others who know it by that name to respond.

I started the drug last Friday and wanted to know what side effects people experienced?  What helped?  If you had a positive response, how long did it take to see that response?

Thanks again,

Jen

New here, pathology report questions

Hi All,

I'm not too happy to be here, frankly, but very glad to know I'm not alone.  I was diagnosed with a melanoma on my arm, near my elbow.  The pathology report is this:

Reporter looking for Stage III/IV female patients in DC area

We’ve received a request from a reporter who is looking to speak with women who have previously been diagnosed with advanced melanoma and who currently live in DC or the surrounding area.  If this sounds like you, and you’re available this Sunday evening (Aug. 8), please let me know by sending an email with your contact information to: tturnham@melanoma.org.  We’ll follow up with more information.  Thanks.

 

Tim

Dr. Wolchok

Just wondering if anybody has any information on an oncologist at Sloans-Kettering hospital in New York?  Thanks

Calling all Nexavar users-Past and Present

Hi all,

Some of you have replied to my previous posts---thank you so much.  I just thought I would re post again and see if I could get more replies.  I started Nexavar last Friday.  Wanted to know what side effedts people experienced?  If your response was positive how much time passed before you started to feel better?  Was it 2 weeks or longer? 

Thanks,

JenM

Six years ago today...

I had the SNB/WLE and skin graft that, I think,  was the true beginning of  my journey through melanoma.  I remember finding the board and being too afraid to even look at the posts as I am superstitious beyond belief! 

Melanoma out of control

I just finished my rounds of Temodar.  Then they did a CT Scan.  Dr. said nothing was growing.  I asked about a specific spot.(lymph node by

arm pit..  They called 2 days later and said my Melanoma has grown 30%.  Thanks a lot for correct comparison. What is use of taking treatment

when you get this kind of results. I have 3-4 spots in me. (lymph node, lung, back, kidney,side of face)   Now Dr. says he wants to wait for this Ipilimumab to be

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