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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Tim--MRF's picture
Replies 20
Last reply 3/16/2012 - 7:14pm

Many of you saw the NY Times article this past Sunday, describing cousins, both with Stage IV melanoma.  They both enrolled in a clinical trial of PLX4032--the BRAF inhibitor by Plexxikon/Roche.  One cousin received the BRAF inhibitor and is doing well.  The other, who received the control, has died.

This raises a lot of questions about clinical trial design.  Our Scientific Advisory Committee has engaged in a very robust online discussion about this, involving about 150 emails!  I wonder what your opinions are on this.  Here are a few questions:

--Is it ethical for the control segment of a clinical trial to be a therapy that is approved, but is almost certain to be far less effective than the drug being tested?  (But, if you don't use a control, then how can you be sure the data are real and not because the patient or treatment team acted differently because they thought they were on a miracle drug?)

--If a person on the control arm does not respond to the approved drug, should they be allowed to "crossover" and get on the drug being tested?  (But, if you allow crossover, then the data for overall survival benefit is compromised, possibly limiting the future approval of the drug.)

--It seems clear that drugs in development right now are showing more promise that drugs that are currently approved.  If this is the case, is it ethical for a doctor to put a patient with metastatic melanoma on an approved treatment without first discussing the option of clinical trials?

If this post results in some robust responses I will work to get this input to the FDA and to the researchers and industry people involved in these trials.


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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, 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. 

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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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Sherron's picture
Replies 10
Last reply 9/24/2010 - 1:51pm

Hi...Just started reading about Jim now has 12 enlarged lymph nodes or tumors....some days he feels good....some days bad....and he has had all these stomach issues and bloating....Just trying to figure out if he would qualify...He's 64...I am assuming he is stage IV now...with all this new stuff showing up withing a 4 week span...nothing new this week, so far.


Take Care,

Sherron, wife to Jim

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Anonymous's picture
Replies 1
Last reply 9/25/2010 - 2:15pm
Replies by: amybusby

Been praying that you get Braf..did you get it yet. Hoping things are stable & going well for you.

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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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JenC's picture
Replies 7
Last reply 9/25/2010 - 12:14am
Replies by: lhaley, JenC, jag, Sherron, Tim--MRF

My husband has been on the control arm of the BRAF trial, and as we expected the DTIC did not work.  We were obviously hopeful that he could have gotten the study drug and were willing to give the DTIC a shot, but I am now hoping that we didn't sacrifice precious time.  He went into the trial with maybe half a dozen subcutaneous tumors and is leaving it with spots in his lung, liver and a golf ball sized tumor in his face and constant pain.  Hopefully his participation helped further the FDA approval of the drug.

The next step is high dose IL2.


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Bruce in NH's picture
Replies 20
Last reply 10/2/2010 - 6:49pm

Hi Friends,

I haven't posted for a while but have kept up with those of you like me who are participating in the compassionate use ipi trial program (10 weeks of 4 ipi infusions every 3 weeks). I've completed the first 10 weeks and my CT scans showed slight reduction in tumor size for two tumors in my left lung and center chest. I have been trying to get rid of these sites since diagnosed Stage IV back in December, 2008. You can get more details by clicking on my profile. In any case, I hope my PET scans tomorrow show some reduction in activity level within the nodes.

My options going forward would be a repeat of the ipi 10 week trial; surgery to remove the nodes (very high risk due to placement in the chest) and BRAF testing/trial. Hoping for the best, and my thoughts and prayers continue for all who fight this disease, especially for those caregivers who recently posted after losing their loved ones. Collectively we will continue the fight for you and for our children and grandchildren.

Hope and peace to all,

Bruce in NH

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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tsoemd's picture
Replies 1
Last reply 9/23/2010 - 10:58am
Replies by: SusanE,%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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himynameiskevin's picture
Replies 14
Last reply 9/24/2010 - 4:40pm

Hey everyone, I've been home from the hospital since friday. I tolerated 11 bags of IL-2 the scond round. The side effects were much worse this time as I was told and expected. I've been taking it easy, resting and recovering here at home. Happy to say that today I finally feel like myself again. Got my first good nights sleep in weeks and only lingering effects are dry hands and a little body itching. And all i do now is wait, I get another Mri in a couple weeks and a ct scan in 5 weeks and see if these things are shrinking. It's kind of nice, these 5 weeks of waiting... no appointments, no hospitals, no bad news, almost like 5 a five week vacation. Time to focus on being me again. Going to get back into the mix at work. I plan on spending alot of time outdoors, staying busy and being active as much as I can. Fill my mind with all the thoughts I had before all of this. Make my self mentally and emotionally healthy inhopes the physical will follow. Just going enjoy this time I have here and try to manifest some positve news from the doctor. We'll see. Hoping and praying.



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Shelby - MRF's picture
Replies 21
Last reply 12/31/2011 - 3:48am

Hello everyone,

We at the MRF are trying our very best to increase membership and conversation on the bulletin board and on chat.  The bulletin board seems to be thriving, but unfortunately, the chat room is say the least.  So, here are my questions to you:

1.  What would make YOU go into the chat room?

2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

3.  If so, what topics would you want to chat about?

4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

We thank you so much for taking the time to help improve our online community!  Your opinions are very important to us and will not only help you, but also future members of our online community!


Shelby Moneer, MRF Health Educator

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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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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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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.


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