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.

Expand/ Collapse Topic
 
Replies By
View Topic

Next week, Melanoma.org will be undergoing maintenance to improve site functionality. To make the process smoother, we want to alert you that the forums will be unavailable between the hours of 2 and 5 a.m. (EST) on Tuesday, February 7, and that any posts made between 5 a.m. and noon that day may not be captured in the transition. Thanks for your understanding! 

Shelby - MRF

 

Why are the boards down?

The boards are suspended so no changes are made to the site during the update - this helps the update process happen much faster.

Will I be able to post again after the boards come up in the morning?

Ideally, we'd like you to wait to post for a few hours after the boards go live, say, waiting until 8 or 9am EST.  That said, you should be able to post again as soon as the boards are live again at 5 am EST.  However, please be advised that if you do post that early, your post may not be captured fully.

The boards look exactly the same as they did before. What really changed?

You’re right -  the boards are the same. What changed is how responsive the site will be. We upgraded our server so that the site will be faster and there will be fewer hang-ups when you click on links, especially on the weekends when traffic is high.

 

Login or register to post replies.

James from Sydney's picture
Replies 1
Last reply 2/3/2012 - 4:24pm
Replies by: bcl

Send this article to your local poilticians and hopefully they will follow.

best wishes

James

http://www.smh.com.au/national/health/sun-sets-on-ultraviolet-tanning-be...

Login or register to post replies.

LynnLuc's picture
Replies 6
Last reply 2/3/2012 - 5:44pm

 

Good News!

We saw my mom a little while ago, and she is extremely excited to say that she has no speech issues! She feels clear headed and can even see better. About as good as we could hope for at this point. She should be in a room soon, and hopefully she'll be making the next update here. Thank you all for staying in touch with us. I've forwarded the messages to her.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

LaneyMcg's picture
Replies 2
Last reply 2/3/2012 - 3:19pm
Replies by: LaneyMcg, washoegal

Hi everyone, I'm so sorry to post over something that's probably nothing when so many of you are battling hard but I'd be really grateful for your wisdom right now.
I have been NED or 5 years now and recently had a new mole appear on my scalp couple of inches above my ear, I am due to have this removed on Tuesday 7th feb, however today I have found a lump behind my ear on the same side. Is this a swollen node? I am freaking A little right now.
I don't know if its a pimple although it doesn't feel like a pimple and it is a little sore but that maybe because I've been touching and poking it for n hour or so. I'm sorry for ranting but I never had swollen nodes before so dont really know what I'm looking for. The swelling is about 1 and a half inches directly below my new mole.
Thank you so much any replies I truly grateful.
Laney x
Love across the pond.

Login or register to post replies.

LynnLuc's picture
Replies 2
Last reply 2/3/2012 - 1:50pm
Replies by: jag, Erinmay22

Out of surgery

Posted by Brandon Haley.

Mom is out of surgery now and in recovery. We should be able to see her in a couple of hours. Things went fine, and we would call the consultation with Dr. Asher mixed to positive news. The tumor was deeper than was originally thought, but he was able to remove it. He would not commit to saying that it was 100% removed, but he referred to possible microscopic traces left. We consider this a positive. He feels that she will need to have further radiation, but that will be something mom will discuss later when she knows more. Time will tell if there is any lingering speech issues. Mom asked me to post later as well when she is moved out of recovery, and I will after we get to see her. Please keep her in your thoughts!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

djdumaine's picture
Replies 4
Last reply 2/4/2012 - 2:50pm
Replies by: aldakota22, Mike N, LaneyMcg, Anonymous

I'm heading to my oncologist today to have a pain under my arm looked at....it's all too familar of a feeling that I had 8 years ago when my melanoma spread to the lymph nodes under my other arm.  Feeling scared and nervous that the beast has returned after 6 years of NED.

Login or register to post replies.

bball's picture
Replies 4
Last reply 2/3/2012 - 10:58pm
Replies by: Gene_S, jag, LynnLuc

anyone doing or know of someone who has been doing Gerson . Very hard to do.?

Login or register to post replies.

Had slnb and wide excision late January at Washington Hosp Center in DC; after initial stage one diagnosis received on melanoma on arm.

Just got pathology and surgery results. Negative on lymph node!!, no trace left after wide area lateral excision.

Initially was contemplating not having the SLNB done (as probability of spread was 5-10% given depth and status of melanoma initially taken out)

Decided to do it for 'peace of mind' reasons. Glad I did.

Though no guarantee of recurrence, I know; it is nevertheless much relieved.

Cant say enough good things about treatment to date.

From initial meeting in Melanoma Center with dermatologists Drs Vanna and Rutterman and surgeon Dr Boisvert to pre and post op care by nurses, other staff at WHC. All staff that I encountered pre/post op were well informed - and most importantly, were excellent communicators. 

Thank you all for answering my preop questions last month and your expressions of support.

 

 

 

Login or register to post replies.

Hi,

Its been a while since I posted an update on me. I just went for a full oncology workup last Wednesday......PET/CT scans, blood work, and clinical exam and a one hour discussion with my melanoma oncologist and melanoma nurse practitioner. Everything is normal, I am NED. NO EVIDENCE OF CANCER!!!! I am working for 5 months now, feel great and LIFE IS GOOD! One year ago we were discussing right leg disarticulation (amputation from the hip socket). I am vigilant, do frequent body skin checks and daily leg checks, looking and feeling for new growths, lumps, bumps etc. I did four doses of Ipilimumab (yervoy) at 3mg/kg last December 2010 to February 2011. I have been NED since my PET/CT scan two weeks after my 4th Ipi dose.

Thank you all for being on this board. This is a wonderful support and information network! I may not post as often these days but thats because I am very busy living life and melanoma isnt taking up all my time right now!

Vermont_Donna, stage 3a, NED

Login or register to post replies.

lhaley's picture
Replies 13
Last reply 2/3/2012 - 4:58pm

Did the brain mapping this morning. Pre admit, and then met with a trial nurse.  I've entered a brain met about a dura lining.  The best advantage was the meeting today with the research nurse who also had been Dr Asher's nurse for several years. She will be in the surgery tomorrow also.   She was so informative.  Went over the surgery step by step.  Answered every questions and relieved both of us.

Everyone who examed me today agreed that the steroids have destroyed my body.  This is going to be an issue a long with just normal recovery.  Hopefully they can remove the entire tumor and the edema will start to leave.  I do realize that surgery itself inflames the brain.  

I am soooo ready for this. I realize that this will take some time but I plan on getting my health back, therefore getting my life back. 

I've asked Lynn to update this site once my son updates my caring bridge site.  Actually I'm sitting in a hotel right now with my husband and my son has flown in and we are waiting right now for the shuttle to bring him.

I hope good news is posted that the entire tumor can be removed (location has been the problem). 

Linda

Login or register to post replies.

chermes55's picture
Replies 5
Last reply 2/3/2012 - 12:38pm

No real updates this week. Went in on wednesday to draw labs and everything looked great. So far im not experiencing any side effect which is amazing compared to interferon. go back in two weeks for more tests. I can"t wait for my first scan, I'm really hoping for the best. Will keep everyone updated when i get more news. As for now i feel better than i have since my surgery in April of last year.Think i might go back to work monday for the first time since June and im actually excited about.

 

Cliff

Login or register to post replies.

http://medicalxpress.com/news/2012-02-scientists-molecular-melanoma-resi...

Looks interesting.  Hopefully this can translate into treatment quicly.

Login or register to post replies.

walesgirl's picture
Replies 3
Last reply 2/4/2012 - 11:13am

Greetings my melanoma clan...I"ve not posted, but I read everyday....I do now have a question...stage IIa diagnosed 9/2011...scalp...2cm around, clean margins, neg SNB...however, felt a hard nodule just on the edge of graft about a month ago...had hit my head there and had a sore, but it cursted, and then here's this...derm is almost positive it's a local recurrence which I understand is so not good...anyone have experience with local recurrence, any encouraging info?? thankyou so much...really

 

beattiesa

Login or register to post replies.

Greetings my melanoma clan...I"ve not posted, but I read everyday....I do now have a question...stage IIa diagnosed 9/2011...scalp...2cm around, clean margins, neg SNB...however, felt a hard nodule just on the edge of graft about a month ago...had hit my head there and had a sore, but it cursted, and then here's this...derm is almost positive it's a local recurrence which I understand is so not good...anyone have experience with local recurrence, any encouraging info?? thankyou so much...really

 

beattiesa

Login or register to post replies.

Greetings my melanoma clan...I"ve not posted, but I read everyday....I do now have a question...stage IIa diagnosed 9/2011...scalp...2cm around, clean margins, neg SNB...however, felt a hard nodule just on the edge of graft about a month ago...had hit my head there and had a sore, but it cursted, and then here's this...derm is almost positive it's a local recurrence which I understand is so not good...anyone have experience with local recurrence, any encouraging info?? thankyou so much...really

 

beattiesa

Login or register to post replies.

Pages