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.

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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...

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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"

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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.

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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"

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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.

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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.?

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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.

 

 

 

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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

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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

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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

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

Looks interesting.  Hopefully this can translate into treatment quicly.

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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

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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

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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

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/1/2012 - 9:49pm
Replies by: jag

We have been interviewed by a drug company because of our the response we have had to their drug for melanoma and they are using it in the news and inside their company for training, etc.  They have asked us to do further interviews with them for the media.  It was suggested to us by one of their crew to make sure that we were given something in return - this was not something we had thought of at all - more about providing hope to others and celebrating our miracle; however, would it be possible or "morally right" to maybe ask for assurance that we would have access to the treatment in the future of we needed it.

Thanks for your opinions.

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