MPIP: Melanoma Patients Information Page

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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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I am new to MRF and the Bulletin Board. I am a stage IV melanma patient with V600E mutation. For the last two years, I have had random subcutaneous lesions that have been removed by surgery but this June CT scans showed lesions in my lungs and back. Until now I have been very active and healthy. I applied for the La Roche study at Providence Cancer Center in Portland Oregon and was randomized to receive RO5185426. I started the drug August 9th and after 10 days on 960 mg/twice a day I had to stop the drug because of a raised rash over 95% of my body with swelling (especially in my face), joint pain and extreme fatigue. I waiting a deciision about whether to restart the drug and at what dosage

I am wondering what others on the study are experiencing.  Molly B

Each moment is precious, live them to the fullest

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Sorry still new and over whelmed and reading these notes is getting me alittle scared of what  is coming. I have not let things get the better me in anything in my life so far but this has got me wondering what my chances really are, and is it  just  battle of prolonged loses. I keep seeing NED and SNB and I don't know what they are. I have had a  Biopsy; a brain scan, a cat scan and a pet scan and all say the cancer is in the neck and has not spread. But with all the reading I have done it is not really true only that it has not shown itself anywhere else. I have no real understanding of this yet and still learning. But I think I might need to leave this board as it does not improve my outlook. I plan on fighting this like I have other things in my life. I almost bled out losing 4.5 pints of blood during the time they found my ulcerative colitis and I was driving my car and was up and walking. This cancer has a fight  but I need more information. What site has answers and not the stats of possible length of life

Nothing is as important as this moment, Your life can be changed in a single Moment and you can live a lifetime in a moment if you believe

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John T's picture
Replies 7
Last reply 8/26/2010 - 4:34pm
Replies by: jag, Julie in SoCal, John T

Hi all

Just though I would check in with a postive update. Since my diagnosis (Stage 3B - Lymph node in leg)  and LND operation back in Feb 2008 , some 5 PET Scans and numerous blood test later - no sign of disease. I went for surgery only option (no interferon or other treatment), and am feeling fit and healthy. Running "mini-iron-man" (running,cycling,swimming) events and enjoying life.  

Best of luck to everyone.

Live Strong

John from Bangkok



Live strong (Borrowed from my man Lance Armstong!)

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TimG's picture
Replies 7
Last reply 8/26/2010 - 9:45am

I am currently at NIH/ NCI in Bethesda going though TIL.    Friday Aug 27 is the day I get the cells infused and start IL2.  Should complete and be home Sept 9 or so.


If anyone will be at NCI let me know maybe we can meet.



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Lauren mom to Jenna's picture
Replies 14
Last reply 8/26/2010 - 9:35am

I am feeling guilty for not posting sooner, but we have been in the heat of it.  Jenna started to get really sick on the ipi trial, and we were thinking that maybe it was a good thing, but her disease continued to grow and spead.  She had bumps coming up everywhere...neck, chest, back, abdomen, even in the muscles of her arms and legs.  We knew we were losing ground quickly.  We had been pursuing MD Anderson for a MEK combo trial (since she responded so well to the MEK) for several months, and finally they were able to get her a spot in the BRAF/MEK trial...and none too soon.  It was difficult just traveling to get there.  We have been here for 2 weeks now and she started treatment one week ago today...Amazing!...her lumps are melting away, and she is feeling much better.  The CT scan that she had last week prior to starting was devastating.  Pretty much the only place she didn't have disease was her spleen.  She will not be scanned again for 2 months, but as we watch her visible disease fade, and she continues to feel better, we are encouraged to believe that internally she is responding well too. 

Thank you to all of you who have been praying for, Jenna.  It has carried us through some real lows to a place where we have hope for healing again. 

We are scheduled to go home tomorrw, and are looking forward to getting some "normalcy". 

Happy in Houston!

Lauren (mom to Jenna)



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"New Treatment for Advanced Melanoma Shrinks Tumors"

Fron Reuters/MSNBC on 8/25/10


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Knutes Pam's picture
Replies 9
Last reply 8/25/2010 - 10:52pm

Knute's MRI shows the bleed, but no new tumors and no growth in the radiated tumors!  Yesterday new med or combination  gave him relief from the constant headache he's had since admission.  He slept hard for 2 hours and then "performed" in a variety of ways.  Practiced sitting, and the stood with help.  Repeating twice.  He was joking with me and remembered all his visitors while I was at work.

So this is a detour on the road to his next therapy not a dead end.  His mel doctors will push things back a month and we'll see if he is ready!  He has such a fighting spirit, although not a lot of patience so this slow regain of physical control will be challenge enough for both of us.


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davidroten's picture
Replies 5
Last reply 8/25/2010 - 10:13pm

We have finished our interferon treatments a week ago. The wife is experiencing depression now. She was depressed slightly during the treatments. Has anyone had this problem of extreme depression after the treatments were completed.

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Niki's picture
Replies 1
Last reply 8/25/2010 - 8:34pm
Replies by: Niki

Just saw the news and NBC Nightly News with Brian Williams did a story on melanoma and the drug PLX4032 (I'm fairly certain that was the drug name). The story featured a 25-year-old woman who has advanced melanoma and has been fighting it for 5 years. After one month on the drug her tumors had shrunk by 50%. Anwyay it said that the drug is proving to be effective in melanoma that has a mutation that occurs in 60% of all melanoma cases. Dr. Keith Flaherty was interviewed in the story. He was VERY encouraged with the results--that such a large percentage of the melanoma population was showing such positive results. The story also mentioned ipi and suggested that both drugs might be given together at some point. Don't know if PLX4032 is only in trials at this point--they didn't really say. Very interesting and very encouraging. Those of you heavy in the battle--thought you might be interested in looking into it.

Best wishes,

Niki (Wife of Joe, Stage IIA)

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Terra's picture
Replies 6
Last reply 8/25/2010 - 7:59pm

hi - derek has a metastasis in a right hilar node - it showed up on a pet scan 2 years ago and is now growing (although slowly) surgeon at our hospital says it is unresectable - would love a second opinion anyone ever have this done and who was your surgeon?


we are likely starting Il-21 vs DTIC in a couple of weeks but if this is removable we want that option - derek is 37 and in otherwise good health



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Tim D's picture
Replies 1
Last reply 8/25/2010 - 7:47pm
Replies by: washoegal



is a poem 
written by a teenager with cancer.

She wants to 
see how many 
people get her poem. 

It is quite the poem 
Please pass it  


poem was written by a terminally ill young girl in a 
New York 


It was sent 

a medical doctor - 
Make sure to read what is in the closing statement 


Have you ever 

On a merry-go-round?

Or listened to 

Slapping on the ground?

Ever followed a 

butterfly's erratic flight?

Or gazed at the sun into the 

You better slow down.

dance so 

Time is short.

The music 

Do you run through each day


When you ask How are you?

Do you hear 

When the day is done

Do you lie 
in your 

With the next hundred chores 

Running through 
your head?

You'd better 
slow down

Don't dance so 

Time is 

The music won't 

Ever told your 

We'll do it 

And in your 

Not see 


Ever lost 

Let a good 
friendship die 

Cause you 
never had time 

To call 
and say,'Hi'

better slow down.

Don't dance 
so fast.

is short.

The music won't 

When you run 
so fast to get somewhere

miss half the fun of getting 

When you worry and hurry 
through your 

It is like an unopened 


Life is not a 

Do take it 

Hear the 

Before the song is 



Dear All: 
PLEASE pass this mail on to everyone you know - 
even to those you don't 
know! It is the request of a special girl who will soon 
leave this world 
due to cancer.

This young girl has 6 months left 
to live, 
and as her dying wish, she wanted to send a letter telling everyone to 

live their life to the fullest, since she never will. 

never make it to prom, graduate from high school, 
or get married and have a 
family of her own.

By you sending 
this to as many people as 
possible, you can give her and her family a 
little hope, because with every name 
that this is sent to, The American 
Cancer Society will donate 3 cents per name 
to her treatment and recovery 
plan. One guy sent this to 500 people! So I know 
that we can at least send 
it to 5 or 6. It's
not even your money, just 



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Jim in Denver's picture
Replies 2
Last reply 8/25/2010 - 6:39pm
Replies by: Jim in Denver, Jackie W

Just wondering if anyone has seen or heard anything about Jerry in the last week.  I don't see anything from the last thread posted.   Last we knew, he was in Denver at St. Anthony's waiting for plastic surgery.  I know many of us are thinking about Jerry, and keep him in our thoughts and prayers.


Jim in Denver

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Tracey FL's picture
Replies 1
Last reply 8/25/2010 - 3:24pm
Replies by: Anonymous

I am look for some one that has been in this trial.  I know mom is the first in Tampa.  In would really like to talk to someone.


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himynameiskevin's picture
Replies 13
Last reply 8/25/2010 - 10:13am

I was just told I have a met to brain as well has my lungs and liver. They swithched the plan of attack to radiation for three days on my brain. Followed by Interleukin 2 in about a week. I'm worried and seeking answers, to feel hopeful. So my question is, has Interleukin 2 ever worked? For anyone? Any success stories you may have heard of?

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Gordon LG's picture
Replies 1
Last reply 8/25/2010 - 10:03am
Replies by: Carver

About three weeks ago I stopped the self injections after nine months of treatment. Two days after my first missed dose, I started getting severe tendonites, and muscle aches, which gradually spread to pretty much every muscle in my body. Feels like arthritis. Anyone ever heard of this happening? My Onc. doesn't think it's related, but how could it not be? Symptoms diminishing somewhat, but still very much present.

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