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.

Donna in VT

Hi Donna,

I'm having trouble getting that leg garment in Canada that we discussed.  I did call one store in Burlington but they never called me back (her name was Meg).  Do you have the phone number of the store that you ordered it at.  Many thanks, Val

Heading in for surgery tomorrow morning.

I'm finally having surgery at UNM in Albuquerque tomorrow to remove my right adrenal gland and what is left of the tumor tissue after completing the clinical drug trial. Hopefully, with a little Grace this will be the end of treatment for a while and after six months of chemo I can enjoy the summer! Even though this will be the most serious surgery I've ever had, I'm looking forward to finally getting it done. They will be opening me down my mid-line so I have a six week recovery of doing NOTHING!

Melanoma Chat Room and Cyber Bar Mixer Tuesday 7-9 EST

Come one and come all to chat.  Stage I to Stage IV most welcome.  

All cyber drinks are free and frequent.

Bitch, whine or moan are welcome as are the magic and wisdom  of tomorrow.

Be there. You will be glad you did.

Tuesday, April 19, 7-9 EST

Charlie S

Robotic Assited Lymph Node Dissection

Stage 3a Melanoma w/1 positive Superficial pelvic node, deep node was negative.

My plan consists of Superficial Node Dissection (open method) and 12months Interferon.

I am seeing studies and reports where the superficial pelvic lymph node dissection is being performed using robotic assistance via a small incision on the top of the upper thigh.

I am looking  for information on facilities that offer this method as well as form feedback from anyone who have had robotic assisted dissection.

Brain

Oh man, am I on the main board?  Being a Melanma push I am now a stroke push.

Understand the symptons - Respoind.

My arms are purple.

Now can I have my son back?

MEK/BRAF Combo Side Effects Role Call

Hello Everyone.  My brother Gary going to SC in Nashville has been on the MEK/BRAF combo for about 2 months and is having frequent bouts of high fever and nausea.  He was on the Braf (GSK) initially and they moved him over to the combo - after the BRAF stopped working.  We were wondering if anyone else is having any similiar side effects, and how eveyone on this trial is doing.  On a good note-he has went from 7 spots - to only one stubborn one in the pelvic area.  Thanks and hope to hear from this oustanding group of brave people, we have grown to love and depend o

Braf trial and side effects

I am hoping to get in a braf trial (if they can ever finally get my tissue sampled...) and was curious what folks are experiencing for side effects?

I was confirmed stage 4 in march with mets to the lungs. Having brain MRI and ct scans done on Tuesday. Let the scanxiety begin!

Pulse Technique

Hi, i wanted to share this UTUBE video of Pulse Technique:

.http://www.youtube.com/watch?v=E44bC8V3Ebo

Helpful for healing and clearing energy

Jim in Denver, how are you doing?

Hi Jim

I haven't seen you on the bulletin board for a while and wondering how you are doing with the ipilimumab/temodar trial.  I have always appreciated your support and wise counsel.  Just to let you know, I'm thinking of you.  Val xx (2nd round of ipi/yervoy)

Stage 3a

Diaganosed in April 2011.

Had surgical excison of site w/clean margins. Sne. Node mapping reveiled 1 or 4  pelvic nodes removed to be positive (superficial node, deep was neg). The plan is a suprficial node dissection (open extraction) on positive side w/ high dose Interferon infusion for 30 days and 3 day per week injection to follow.

My questions is has any had node dissection with robitic assistance vs open method, if so at what facility?

 

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