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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jag's picture
Replies 2
Last reply 9/23/2010 - 9:21pm
Replies by: jag, washoegal
Insert Generic Inspirational Motto Here

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The Gambler's picture
Replies 2
Last reply 9/23/2010 - 8:22pm
Replies by: Anonymous

Marsha  Karen  Brandi  Diane  Mary  James  Jim M  Cara  JAG  Al  Linda.....Wow I feel like i have been adopted by a large  family. You all sent me a lot of good ideas and suggestions and most of all your support and I am very thankful. Currently I have a good oncologist and he has me on a routine schedule of exams and scans and next up is a doctor of naturopathic medicine so Deb and I are moving forward with this and I have gotten validation from several on the direction which makes me feel good....... again thank you and Deb and I will stay in touch..   Bob 

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Terra's picture
Replies 1
Last reply 9/23/2010 - 4:13pm
Replies by: W.
Hi, I have a scan to send electronically to a different country for a second opinion - I sent through yousendit.com, but he is unable to open it I am wondering if I sent the wrong file.  These are the files I see on the scan when I open it up - does anyone know which one I should attach to the email to send him. 
 
3942
autorun
dicomdir
395596
command
readme
efilmlite
pacsube
dcvalid
dcsstart
 
Thank-you.

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tsoemd's picture
Replies 1
Last reply 9/23/2010 - 10:58am
Replies by: SusanE

http://www.nytimes.com/2010/09/19/health/research/19trial.html?_r=1&sq=september%2019,%202010%20and%20melanoma&st=cse&adxnnl=1&scp=1&adxnnlx=1285174989-REekyEfISOM1TDxteT1XOQ

Please refer to the above link for the New York Times article that talks about this very promising drug called PLX 4032 - a highly selective V600E BRAF kinase inhibitor that is found to be effective in melanoma.  Unlike the study discussed in the NYT article, the study that we have will not randomize patients to DTIC (old chemotherapy regimen).  As long as the patient's melanoma is BRAF positive, they are given PLX 4032.  For more details, please contact Elisa Bomgaars, MD at 402-354-5860.  We are recruiting patients still but the study will complete accrual soon.

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Sharon in Reno's picture
Replies 75
Last reply 9/23/2010 - 9:57am

Hi Friends

Any stage 1 and 2's might want to run away right now......this is a bitch and the beast from hell has got a hold of me now and is not letting me go.

I'm checking in . I called Hospice last week, my sister came down, it will be 2 wks ago come this Sunday. Had more surgery to  my left arm, yep it was full of melanoma, had more brain mets, had WBR (3) stopped that after 3 times, burning pain on fire all through the night. CT Scans showing lower lunbar spine is full of melanoma, it spreads out like a horese tail and sends shooting pain down my leg, one tumor is on a eye nerve, I am now completely blind in my right eye  and 'em wearing an eye batch to stopped the double vision so I can see, I can't walk., I'm in a wheel chair &  walker, cant bath myself, blah, blah, blah...this is it. Today is my granddaughter 9th b-day so I wanted to live long enough to be here for that.  Hospice dropped the ball today w/pain meds and are getting their asses jammed....give me drugs NOW. I've asked my sister to posted when I'm your Warrior Angel. Ipi and others are a waste of time for me now cuz the beast is everywhere.

 

So I'm saying goodbye to all now, you have been more loving and a soruce of stregth for me more than you will ever know. For those of you who can...FIGHT ON & NEVER GIVE UP....I LOVE YOU...SEE YOU ON THE FLIP SIDE. LOVE, SHARON IN RENO, STAGE IV.....going down kicking and screaming with love and lots of DRUGS.

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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bcl's picture
Replies 12
Last reply 9/23/2010 - 12:46am
Replies by: bcl, Jim in Denver, Anonymous, Tim--MRF, paleskinisin, killmel

Cass is looking for a follow up to plx -I found this comment by Unite in the archives -does anyone know how close these combos are to trial?

 

Posted by Unite at 05:50 on Fri, Jul 23, 2010    [Show other posts by Unite]

In Reply to: Re: confused about inhibitors by Tom posted at 06:07 on Thu, Jul 22, 2010

Mek inhibitors have worked in Braf inhibitor delayed failures. Try the MEK or ipi trials next. I think ipi and MEK or BRAf inhibitor combination will ultimately work for many patients

(BMY is developing a BRAF which will probably be tried with ipi or like drug). Ipi and chemo seems to also work for some patients but I am not seeing a lot of trials for this combo.

 

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nj-Mark's picture
Replies 13
Last reply 9/22/2010 - 11:33pm

Hi All,

First time posting on the "new" MPIP board; very fancy!

So, i'm out on disability now and am pondering my next steps after washing out of the PLX-4032 trial in early August.   (I took August off to spend time with my kids.)  I now have a number of large (3x5 inch) tumors encasing arteries and muscles in my back and groin, and numerous involved lymph nodes elsewhere.

My doctors have suggested I try single agent DTIC or Temador, or polychemotherapy such as CVD (dacarbazine, cisplatinum and vindesine) as an approach.   As I read about these in the literature and on MPIP it is really hard to find success stories of durable response to these treatments.    I was a great responder to PLX (70% tumor reduction) but in the end they all came back and then some.

I would very much appreciate hearing from anyone who has (or has cared for someone who has) undergone these treatments.   Worthwhile?  Gateway to other treatments that helped?

Best of luck to everyone,
-Mark

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/22/2010 - 9:54pm
Replies by: King, Lori C, dian in spokane, Rocco, jag, Anonymous, Terra

Anyone hear from Rocco. I think that he had scans 2 weeks ago and he did not post results. So worried about him.

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Sharon in Reno's picture
Replies 16
Last reply 9/22/2010 - 9:01pm

Hello Friends,

Im serioulsy considering Ipi over BARF and was looking for Ipi success stories and or anyt thoughts or comments on Ipi. Thanks, love, Sharon in Reno, Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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Hi,

 

Curious how braf is doing for you. I read your past post. Hope you are still doing well on Braf since May...Please let us know how you are doing.

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If so, what was your experience and how did you handle the baseline testing,?

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Lori C's picture
Replies 5
Last reply 9/22/2010 - 4:54pm

Will had his fourth round of Carboplatin  & Taxol.  I'm still nervously awaiting his brain scan (MRI) results.  He had the scan at one hospital (local) and they were to fax the results to Rush (his treatment hospital).  I thought it would be there yesterday but nada.   He has not vomited in a week now, which is good.  The fatigue remains serious.  I talked to the chemo nurse about it and she thought that it might be in part from weakness and walking more might help.  That makes sense as he has been somewhat resistant to doing much and has indeed gotten weaker as a result. 

In 3 weeks he has another CT scan to see how the chemo is going and if all is okay, 2 more rounds.  No idea what might come next, though.  I guess it depends on many variables.  Prayers & good thoughts for the various scans much appreciated.  I'm bringing him back to my house again today.  It has become very difficult to care for him in his own place.

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Shelby - MRF's picture
Replies 1
Last reply 9/22/2010 - 12:46pm
Replies by: ValinMtl

Together with the Moffit Cancer Research Center and Massachusetts General Hospital, the Melanoma Research Foundation presents a day of melanoma education dedicated to melanoma patients and the people who support them.

 

LIVING WITH MELANOMA - SCIENCE TO SURVIVORSHIP

Saturday, Oct. 16, 2010 at the H. Lee Moffitt Cancer Research Center in Tampa, FL

Friday, Oct. 22, 2010 at the Massachusetts General Hospital in Boston, MA

 

Symposia are FREE to patients, caregivers, family members, and health care providers.  You can register on our website under Programs -- Educational Programs -- Upcoming Educational Programs.  Lunch will be provided. 

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NancyGM's picture
Replies 3
Last reply 9/22/2010 - 9:41am
Replies by: jag, NancyGM, TAC

I have been NED for 2 and a half years, working and making under $1000/ month for one year. My disability redetermination with Social Security was denied and now I am in the process of appealing the decision based on the fact that stage IV is a "condition" one is not expected to recover from whether one currently has active disease or not. Without my medicare/ medicaid I will not be able to be monitored for reccurrence.

My question is:  Do I need to find an attorney? I can't afford one. I will have to pay back all the months of benefits I receive during this appeal process if I am denied again. 

For the last year or so, I have been in NED "busy living" land...Please know I admire all who remain here to offer support and guidance while well. Thank you for any information.

NancyGM

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Linda J's picture
Replies 2
Last reply 9/22/2010 - 9:36am

PET scan results were good - there were no new tumors aside from the ones they already knew about. I've got good organs. 

So the plan is to continue on with radiation (I'm in week three) and then have surgery to remove the remainder of the tumor and lymph nodes three to four weeks later. 

They did mention today that I tested positive for BRAF - and then it was mentioned that maybe they will get me on the drug before surgery.  Does this make sense?  I don't know much about BRAF.   Can you do BRAF stuff after the cancer has been taken out?  How long do the BRAF drugs take?  I'm waiting to have an appointment with the medical oncologist in charge of clinical research.

So, today wasn't as bad as I thought it was going to be :-)

Live strong!

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