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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KatyWI's picture
Replies 7
Last reply 3/30/2011 - 11:27pm

My oncologist sent out a tumor sample for BRAF testing (I was negative).  My EOB came back denied as "not medically necessary."  As far as I can gather from talking to the insurance company, the bill is coded as genetic testing, and they only cover genetic testing for a few very obscure conditions (none of which I have!)  Has anybody had any luck appealing in this kind of situation?  What was your doctor's argument that it should be covered?  I have BCBS of GA (yes, despite living in Wisconsin.  Beats me how that works.)


Just keep going!

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Netlla's picture
Replies 19
Last reply 7/11/2011 - 3:14am

Has anyone who has had melanoma of the liver opted for the ipi or E-7080 clinical trial? My step-father has BRAF-Negative, wild-gene mutation melanoma in the liver, lung and lymph.  He has failed the clinical trial of the Abraxane drug. He is currently approved for the ipi treatment and it is to begin this Friday. I have heard some negative things about this drug. I know the E-7080 seems to be newer and is approved for BRAF-Negative melanoma. Does anyone out there recommend one over the other? I just feel like one of the two are his last option, he is getting very sick, and I just don't want to make the wrong decision on treatment. Please help! 

There is always hope.

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Anonymous's picture
Replies 1
Last reply 3/29/2011 - 7:43pm
Replies by: MichaelFL

Is a miotic rate of 2/10hpf considered high or low?  Just curious because I don't understand this part of pathology report.

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Tim--MRF's picture
Replies 5
Last reply 3/30/2011 - 10:28pm

Genentech has just opened a study for people who have taken the Plexxikon/Roche/Genentech BRAF inhibitor, also known as PLX 4032.  This study is a combination trial using PLX plus a MEK inhibitor.  Some folks from this board have been in the BRAF/MEK trial being run by GSK, and this new trial is similar.  One criteria, though, is that you must have taken the Plexxikon drug and have developed resistance to that drug.

Currently three sites are open:  Dr. Gajewski in Chicago, Dr. Ribas in UCLA, and Dr. Gonzalez in Denver.  Four more sites will open soon.  You can go to this link to find out information about melanoma relevant clinical trials, including this one:


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IF you are offered "wait and see" or HD interferon, you may want to do HD  interferon for 29 days and then get tested for phosphorylated STAT1 (pSTAT1) .

 Stat1 signaling helps differentiates the Naïve T-cells toward the TH1 phenotype needed to attack the Tumor cells.
High pSTAT1 in peripheral blood Tcells of Melanoma Patients may correlate with good clinical outcome in the first 29 days of HD IFN therapy.

TH1 adaptive immunity, and immunosuppression suggested that TH1 adaptive immunity has a beneficial effect on clinical outcome.

Bets regards,


Jimmy B


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Melanoma Rates May Be Higher for the Rich

Study Shows Link Between Melanoma and Higher Income Levels

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Jan in OC's picture
Replies 8
Last reply 3/31/2011 - 2:07pm
Replies by: jhoey, Jan in OC, Anonymous

Hi everyone, 

I need some advice. My husband has had the worst itchy rash since his third infusion of IPI.  His skin turned really red all over (like a bad sunburn) and feels all bumpy (he says it's gator skin).  The doctor gave him a small dose of steroids, but had to increase it after a week and a half of no results. The rash has improved somewhat, but he still itches like crazy.  We are supposed to go for his 4th infusion tomorrow, but the doc has said he may not give it to him due to this reaction.  Also, the spots on his side have all increased in size and new ones have appeared.  He is really worried that the IPI is not working due to the steroids.  Has anyone gone thru this?  Has anyone had to stop IPI before all 4 infusions?  We don't have a lot of options if he fails this. He has already tried Interferon/BRAF.  Has brain, liver, lung, kidney mets.  Any input would be appreciated. 


Jan, wife to Dirk

laughter is the best medicine

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Simmy from Oz -Melbourne's picture
Replies 9
Last reply 4/24/2011 - 12:29am

Hi there everyone,

Ive been taking RO5185426 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours.  Only problem is Ive got the most severe, acne- like, extremely sore facial rash :-(    Its been like this for  5 weeks now and only seems to be getting worse.  Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face.   My whole body is so itchy tho, its driving me nuts! 

Has anyone else experienced this? & how have u treated it?  My oncologist gave me some tabs to treat acne and infection, and some cortsone type cream.  Hes given me a week, and if theres no improvement in my skin, he is going to drop my dosage of RO5185426, which Im  a bit scared to do when Im getting such a good response.  He does not seem too concerned about dropping my dose & thinks that 6 tabs a day instead of 8 will be sufficient for my body weight (55kg)

What do all you experts out there think & has anyone had this RASH problem...Will it ever GO AWAY?? 

oh, also while im here, has anyone experienced nerve damage in their legs and feet after having them blow up with fluid and then drained very quickly?  its like i have constant cramps in my calfs and an aching kind of pins and needles in my feet.  i cant walk properly and its extremely painful.  this all happened before i started taking R05185426, so it cannot be a side effect. 

Thanks all for your wonderful kind hearted replies,

keep smiling everyone  :-)          Simmy from Oz     xo  

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claudia-uk's picture
Replies 6
Last reply 3/29/2011 - 10:29am

I read some press release in regards to the FDA approval of Ipilimumab/Yervoy and wonder what the survival times actually mean. I can't find mcuh consolation in a survival time of 6 months ot 10months

The study compared ipilimumab treatment with an experimental tumor vaccine (gp100), gp100 alone, and ipilimumab alone. Median overall survival was 10 months among those who received ipilimumab plus the vaccine, 10.1 months among those who received ipilimumab alone, and 6.4 months among those who received the vaccine alone.

If it is some kind of average, how does it work?


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Anonymous's picture
Replies 11
Last reply 6/6/2013 - 12:00am

Please explain the difference. I know a shave is what it says & a punch is what it says but I get the impression that a shave biopsy isn't so great, why?

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theonlydrea's picture
Replies 9
Last reply 3/29/2011 - 10:38am

i was wondering if anyone has or is currently on the Braf particle or food study. My husband will start on the study here soon.

everything i have read posted was just on the doseage or double blind study. the dosage they are saying is now se (i beleive it was 300mg ever 12 hours)t, it is not a double blind study and at this point they are testing if food effects it and if the type of form given effects it. If anyone has any information on what to expect and experiences please let me know. 

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debandmike's picture
Replies 3
Last reply 3/28/2011 - 8:55pm
Replies by: ValinMtl, MichaelFL, KatyWI

Loving the website so far but could use a few guidelines on how to set up a profile. Am I setting it up for my husband who has the cancer? Or both of us?  Looking for guidance and appreciate all your replies to my email. I feel I have found a place to go and share with others who are going though the same thing my husband are going through. Thank you for welcoming us to your family.

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trojansurvivor's picture
Replies 17
Last reply 10/30/2011 - 5:01pm

I am an 8 year Melanoma stage 4 survivor, and have been in the drug trial for Yervoy for the last 6 years, and have had clear scans for 3 years.  I originally was diagnosed with stage 4 in late 2002, with tumors in my lung, spleen, liver and spine.  I had bio-chemo therapy,(dacarbazine, cisplatin, IL-2, and interferon).and went into remission for about a year, including a monthly maintenance program of low dose IL-2. After about a year, I started to have soft tissue tumors appear in my groin and upper thigh area, and had about 5 surgeries for tumor removal.  After 6 more small soft tissue tumors appeared, I began the ipilimumab trial. My only side effect was a skin rash on my stomach and back of my legs that disappeared in a couple of months. My tumors began to decrease in size dramatically, with most disappearing within a year.I had a second infusion treatment 2 years after the first treatment.  One tumor, however, began to grow larger and about 3 years ago was surgically removed.  For the last 6 years, no new tumors have appeared, and I have had clear scans for the last 3 years.  

This drug was a god sned for me and saved my life !!!

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Charlie S's picture
Replies 7
Last reply 3/29/2011 - 6:34am

Just got off the phone after a nice extended conversation with Amy and she is hanging well.  Between Fentanyl patches and oral meds for breakthrough, she is managing and living.  She was able to go to church yesterday with her family, but tires out after extended outings.

She was quite lucid and just like the Amy I know, but she is tired, tired, tired and still continues working the problem.  

Most of all, she is hanging in there as are her family.

A remarkable woman.

Charlie S

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mimi0201's picture
Replies 2
Last reply 3/28/2011 - 5:00pm
Replies by: Anonymous, Tim--MRF

      Does anyone have any info on obtaining "Yervoy"?  We are in limbo and are unable to get answers on our end.  We're hear at NIH waiting to be tranferrred to Rush Chicago.  Thanks.

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