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.

Expand/ Collapse Topic
Replies By
View Topic

So those who also have breast cancer, this is good news.
Medicare Won't Change Avastin Coverage For Now
Elsevier Global Medical News. 2011 Nov 21, C Kelly


The Centers for Medicare and Medicaid Services will keep the status quo for now regarding Medicare Part B coverage for Roche/Genentech's Avastin (bevacizumab) in metastatic breast cancer despite the Food and Drug Administration's decision to formally withdraw approval for the indication, according to a CMS spokesman. "Medicare will continue to cover Avastin. CMS will monitor the issue and evaluate coverage options as a result of action by the FDA but has no immediate plans to change coverage policies,"...

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

laurieformike's picture
Replies 2
Last reply 11/28/2011 - 2:20pm

My husband, Mike's been on the Zelboraf since Oct. 3, had to stop taking do to severe rash and throat swelling. Waited 10 days because he could not get in to see Oncology doctor. But then restarted at lower dose of 3 pills twice a day. He still has side effects joint pain and tiredness and fatigue. Spoke with the Zelboraf Access Solutions Patient Support Nurse, she said he could go down to 2 pills twice a day. Just wondering if anyone out there has had to change dose? E-mailed the doctor to see if that was okay with him.

Login or register to post replies.

Napa K's picture
Replies 1
Last reply 11/26/2011 - 5:04pm
Replies by: DonW

Looking for input from those who have gone before me.  After nearly 9 years at stage IV I now havea 12 mm brain met.  Have met w two neuro/radio oncs (one works with my longtime onc/team and the other not).  I know there is not much documented "evidence" for one being better than the other but after hearing all the info, my gut tells me gamma may be a better option.  Reallly welcome your input and thoughts.

Hope is the most powerful drug

Login or register to post replies.


"Melanoma is very highly mutated and is in some cases mutated approximately on an order of magnitude higher than other cancer types," said Yardena Samuels, Ph.D., an investigator in the Cancer Genetics Branch of the National Human Genome Research Institute's (NHGRI) Division of Intramural Research. Dr. Samuels is part of a National Institutes of Health (NIH)-led team studying the genetics of melanoma and is the senior author of an article in the Sept. 25, 2011, early online issue of Nature Genetics that found that mutations in the metabotropic glutamate receptor-3 (GRM3) gene cause some cases of melanoma.

This newest melanoma-causing mutation joins a growing list of culprits. In April 2011, Nature Genetics published the team's first systematic genomic probe of melanoma. Using whole-exome sequencing, a technique that deciphers just the portions of the genome that code for proteins, the researchers identified 15 new mutations that drive cancer development and one that had previously been detected. The researchers found that one of the mutated genes, GRIN2A, is mutated in 25 percent of melanoma cases. It is located in the signaling pathway for the nerve cell messenger glutamate — the same pathway as GRM3.

In the current study, the researchers focused on mutations in the largest human gene family, G protein-coupled receptors (GPCRs). The significance of the receptors coded by GPCR genes is underscored by the fact that they are the targets of more than half of drugs approved by the U.S. Food and Drug Administration (FDA). Additionally, genes in the GPCR family regulate signal pathways for cell growth, the hallmark cellular activity in cancer.


To explore the function of this gene, the researchers studied melanoma cells that harbor the mutations. In an experiment that heightened the function of mutated GRM3, the researchers detected increased activity of a signal pathway called the MAP kinase pathway, already known to be involved in melanoma. A kinase is a type of protein enzyme that modifies other proteins to cause some particular cell function. The pathway includes a kinase known as MEK targeted by current melanoma drugs. While some targeted treatments have been effective, tumors become drug resistant within months of treatment. The pathway also is associated with the most highly mutated gene in melanoma, called BRAF.

The researchers performed a test to detect whether the cells with the newly identified mutation in GRM3 respond to the drug that inhibits the MEK pathway. They detected that mutated cells treated with a MEK inhibitor responded positively, dying off as they should rather than persistently replicating as cancer cells.

Further analysis showed that when the cells carry both a BRAF mutation and a GRM3 mutation, the inhibitor compound selectively killed the cells that had the GRM3 mutation. Dr. Samuels suggested that in some cases, failure of melanoma cells to respond to a MEK inhibitor might be due to those cells having a BRAF mutation but no GRM3 mutation. Dr. Samuels predicts that prospective genetic analysis will enable differentiation of melanoma into subclasses.

"Melanoma has been subdivided by pathological characteristics," she said. "With the advent of in-depth genetic analyses, it may become possible to classify melanoma by its genetic alterations. Based on our two recent studies, I predict several melanoma subclasses will be identified in the near future."

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

mombase's picture
Replies 2
Last reply 11/25/2011 - 11:30am
Replies by: Janner, JerryfromFauq

and I can't deal with it at this point.  I will be praying for everyone on this board.

With respect and gratitude,

Cristy, Stage IV

Getter done!

Login or register to post replies.

LynnLuc's picture
Replies 4
Last reply 11/26/2011 - 4:23pm
Replies by: Phil S, LynnLuc, Anonymous, MariaH

Another warrior has passed away-Mr. Michael Alan Brockey, 33, of Adamstown, passed away at home on Nov. 18, 2011 after a very courageous battle against cancer. He was the husband of Amy Brockey, whom he married on April 15, 2005.

another melanoma stage 4 warrior passed away at the age of 33...


When I first started reading his blog back in 2009 he was doing Gerson Therapy... his latest was  B-raf

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

Hi Jacki,


Was wondering how you are doing?? Hoping the best for you. God Bless Mary

Login or register to post replies.

nickmac56's picture
Replies 24
Last reply 11/27/2011 - 8:00am

Thanks to all of you who provided information, support, and good cheer over our last 16 month journey. It was a rough road, and as she continued on her downward spiral I was helped so often to understand choices and consequences through the people on this site. I will be forever grateful. I wish all of you the very best.


Her motto: "Don't wait for the storm to pass, love dancing in the rain".

Login or register to post replies.

bradcope1's picture
Replies 5
Last reply 11/28/2011 - 12:44pm
Replies by: bradcope1, LynnLuc, Becky

My daughter just got word today that she missed out on the ipi arm of the trial. The good news was that the all the scans and tests were clear, the bad news was that they want her to start interferon Monday morning. That's not going to happen. Only 10 days left to find a trial. The process stinks.

Watching and waiting.

Login or register to post replies.

dearfoam's picture
Replies 6
Last reply 11/29/2011 - 7:01pm

Dad (stage IV, mets through chest/ lungs/ brain) went to stay out of town with my sister for a week and some days prior to Thanksgiving so hubby and I could get away for a bit. He had started Zelboraf the week before and was on Temodar for several months prior to that. Still on Dechadron 2mg since he's had ongoing brain swelling issues. I sent all the scenarios, drs info just in case, med lists, everything, and all this on top of making sure he couldn't run away like he thought he would try to do!

Anyway, she found him on the floor yesterday morning, aseep under a bedside table. Confused, unable to stand or walk at all. His doctors up here referred him to ER down there, and he is in NICU now with no talk of when he will be discharged. Only semi-alert today, still confused, etc. Had some kind of seizure in the night, apparently. Waiting on that EEG report. Has some sort of infection showing up in urine as well.

We are heading down in the morning to visit.

This is the worst shape he has been in in the 8 months we've known about the Melanoma. Not sure what to expect; none of us do, I guess.


Login or register to post replies.

I had a craniotomy Nov 1 and SRS on 3rd brain tumor Nov 10.  In the past three days I am experiencing really bad headaches.  Should I be worried?  


Thanks, David

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

Login or register to post replies.

Rocco's picture
Replies 5
Last reply 11/25/2011 - 1:51pm

I was blessed to have received word yesterday that my scans for this quarter were again clean.   While I am certainly happy about that, my joy was truly shadowed by sadness having learned yesterday morning that two other melanoma warriors had lost their battle, each leaving behind grieving spouses, children, family and friends.  My condolences to all those close to them.  

On another note, a couple of months ago I had asked my Onc to have my tumor tested for BRAF just in case my NED status were to change in the future.  Received the results yesterday that I do not have the BRAF mutation. 

Rocco, Stage IV since 2005

Luke 1:37

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 11/23/2011 - 8:12pm
Replies by: Anonymous

did others get a bunch of spam from this site in their email today?

Login or register to post replies.

SStamps's picture
Replies 1
Last reply 11/23/2011 - 8:04pm
Replies by: shellebrownies

My husband and I are sitting outside of Dallas waiting on Dr to call us back to tell us to go home or back to Houston for radiation or surgery. Mickey's brain MRI was ok no new tumors and the ones left are shrinking ct of abdomen no new tumors and the ones left are shrinking. They added the spine MRI because of pain he is having. His 4th ipi was 9-23-11 pain started about one and half weeks later. How come ipi wouldn't be working on spine tumor?

Login or register to post replies.

Sherron's picture
Replies 3
Last reply 11/24/2011 - 11:45am
Replies by: flynn, Rocco

I checked his blog today, and am shocked, Mike passed away on Nov 18th, 2011....He's only 33, with 3 small children...I don't know if he has a profile or not.  His is blog is sMelanoma, cancerstinks!   He is also a facebook friend of mine.  I am totally shocked.  i had no idea it had got that bad,......

Take Care,


Sherron, wife to Jim FOREVER

Login or register to post replies.