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
Angela C's picture
Replies 7
Last reply 11/16/2011 - 8:33am
Replies by: jag, Laurie from maine, Lisa13, JerryfromFauq, lhaley, Anonymous

Hey everyone.

I had my first brain met, 2 mm, in August and had SRS on 8/24. Today was my first scan since then. Today I got the GREAT news that the spot they zapped is gone and there is nothing new, and no brain swelling. It is such a relief!! I was really worried that there would be new mets since melanoma likes the brain so much.

I just finished my last dose of Yervoy last week and will have CT scans on Nocember 29th. Hopefully those scans show great things as well!!

I know that it is very possible that my next brain MRI may not show such good results, but we have to celebrate the good news when we get it!!

Just wanted to share some good news. :)


Be kind, for everyone is fighting a great battle. -Plato

Login or register to post replies.

Anonymous's picture
Replies 9
Last reply 11/23/2011 - 4:33pm

Hello!  My father was diagnosed with melanoma (on top of his head) 12yrs ago.  He had surgery to remove and was told if he made it 5yrs without recurrence he should be "in the clear".  Unfortunately, last month he began having abdominal pain and weakness which resulted in him being hospitalized.  While there a CT was performed which revealed recurrence of the melanoma.  He has mets to an area beside of his kidney, a lesion in his omentum and positive lymph nodes in his chest.   He has malignant melanoma (BRAF V600 mutation).  He began the drug Zelboraf today.  I'm very interested in speaking to anyone that may  have information about this medication (side effects, response rate, etc). 

Login or register to post replies.

Karolina's picture
Replies 4
Last reply 11/16/2011 - 4:53am


i wonder if you can advise whether loosing weight, ca. 13 pounds a month is something what can be explained by nerves or is this something what should be looked at due to the cancer issue?


Login or register to post replies.

Lisa13's picture
Replies 4
Last reply 11/15/2011 - 11:09pm

I'm sitting here waiting to go in for gamma knife. The dr was here and suggested I not drive and have 10 percent chance of getting a seizure. I literally feel like crap now and hoping both of these things just aren't true. He did say the 2 brain mets I have are in very safe areas.

I know jag used to have seizures and could't drive for a bit, but is anyone else in the same boat? The possibility of not driving is to last 6 months.

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

DonnaK's picture
Replies 1
Last reply 11/15/2011 - 10:05pm
Replies by: ockelly

I want to start by thanking everyone who has responded to my posts in the past. This community has been a tremendous resource to me and my husband as we've begun to deal with this awful disease.   My husband, John, has now completed his first three weeks of high dose interferon with reasonably few complications. He's been exhausted, particularly at the beginning of the week, but otherwise, he's been okay.  His neutrophil counts were low at the end of the first week and his dose was subsequently lowered by 30%.   Now after three weeks, both his neutrophil and  lymphocyte counts are low.  I know that lymphocyte levels are correlated with success of ipilimumab, and that some tumors spontaneously regress due to tumor infiltrating lymphocytes.  Should we be worried about the low lymphocyte levels? Or, is this a sign that his lymphocytes are infiltrating surrounding tissues to kill off remaining tumor cells?  Or, am I just reading too much into a single number?

We meet again with the doctor on Friday, but I want to make sure we're prepared with the right questions to ask.  Thanks to all in advance!


Login or register to post replies.

NYKaren's picture
Replies 6
Last reply 11/16/2011 - 9:24pm

So, I'm all hooked up, waiting for my dose of il-2.  I showed Dr. Sznol the little buggers that seem to keep popping up, his response is that I'm having a plus/minus response.  My lymph nodes no longer show up on PET, (As of 2 weeks ago, none of the intransients did either.  He did say it's not a fluke thAT i have these now "things" on my face, they're definatly part of the Melanoma. 

After I get home, he wants me to go to Dr. Wolchuk and sign the consents for their Anti-Pd1 trial with the new drug from Israel.  This way, they'll scan me and if necessary get me into that trial.  I find to be very good news and quite reassuring. 

Here they come with my dose...

talk  to you tommor.

Don't Stop Believing

Login or register to post replies.

bradcope1's picture
Replies 10
Last reply 11/21/2011 - 8:33pm

My daughter is entering the Stage 3 Interferon/Ipi trial soon and I am confused by the choices. Why pit these two drugs against each other when there is 20 years of data on interferon already. It should be too hard to compare the data. And since patients can get interferon without a trial, one would assume that most, if not all of the participants enter for the chance to get the ipi arm. With the cost of the interferon in this trial placed on the patient (or their insurance company), there is even less incentive to get this arm. I'm all for gathering important research that might some day beat this horrible disease, but it seems like comparing another new drug or even a placebo would be more informative. Any thoughts on the thinking behind this?

Login or register to post replies.

Lisa13's picture
Replies 3
Last reply 11/15/2011 - 2:42am
Replies by: JerryfromFauq, Blueyes, Fen

I met with my radiologist today to discuss the procedure of gamma knife tomorrow. He said my tumour (2cms) is showing no signs of edema which is unusual for most brain tumours.  That being said, he was going to give me or perscribe me the steriod in case there is an inflammation/edema after gamma knife treatment.  For those of you who have done gamma knife, did you take this steriod?  I'm not a big fan of taking things like that, but do understand that they're needed at times.  Maybe this is standard for larger tumours than small ones. 

I also met with my clinical nurse today who told me to continue to be optimistic - especially in terms of keeping the immune system strong. Although ipi doesn't travel into the brain from your blood, lymphocytes can go in there and work some magic. She has seen some people who have developed brain tumours after ipi, but ipi has helped these tumours from growing. 


Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

emilypen's picture
Replies 8
Last reply 11/19/2011 - 1:37am

Hi All,

So after fighting this beast for 4 years it seems we're at the end of the line.

My husband has been through; Interferon, Dacarbazine, P13k/Mek, Surgery with Radiation, Roche Braf, more radiation + WBR,  IPI and now Carbo/Taxol.

After the first treatment of Carbo/Taxol his sub q's cleared really quickly leading us to wonder if it was a combined response to IPI and chemo, but a 5 week wait for the 2nd chemo infusion led to increased pain and some sub q's popping back up. Finally his bloodwork was satisfactory and he got the 2nd chemo last week. It's doesn't seem to be working as fast this time around.

Meanwhile he's a little confused at times, nodding off throughout the day, really weak and not retaining much in his memory.

Based on his last MRI's to check his spine and brain ( last week) his brain mets are skrinking and no new ones have popped up, but the mel is pushing on his spine in places and is directly in his spinal canal as well.

So he starts more pallative radiation this week. 

He doesn't seem to have registered that the doctor told him he has maybe months to live, ( that was 5 weeks ago) which I am fine with! And I am hoping he makes it to the birth of our first child in late Feb.

We're lucky in many ways, i don't have to work right now so I can take care of him, his work has a 2 year full salary disability plan and covers all medical costs that our Canadian system may not ( like prescriptions) we have a great family support system. Home care when needed, and the morphine takes care of most of his pain.


I really hope that the carbo/taxol works and helps get the tumour burden under control so that he can get strong enough for another clinical trial in the new year, right now his doctors say he won't qualify for anything based on his health.

What I'd like input on is how does this end? I'm not trying to be negative just want to know what to look out for.

Sometimes i think we'll go to bed one night and when i wake up, he won't. 

I've looked on the web and can't really find anything about end of life signs other that the couple of hours right before if any one has info to share that would be much appreciated.




Login or register to post replies.

janP's picture
Replies 3
Last reply 11/15/2011 - 2:36am
Replies by: JerryfromFauq, lhaley, akls

Hi All,

Diagnosed in 1992, I have been stage IV for several years (having had  vaccine therapy for about 10 years).  I have had numerous mets including twice to the small bowel and necrossis of a suspected melanoma in the brain.   I posted here a few weeks ago very anxious over a nodule in the left lung believed to be melanoma.  A diagnostic bronchoscopy only indicated that it needed to be removed immediately.   Just got home fromthe hospital following a thoracoscopy with removal of the upper lobe of my left lung.  Awaiting final pathology, but preliminary pathology indicates IT IS NOT MELANOMA!   Imagine being overjoyed to have a lung cancer (have been told this particular cancer is somewhat rare, does not like to wander and will not require any further treatment); just so happy to report that this one is not melanoma.  Thanks for all your support.


Login or register to post replies.

Napa K's picture
Replies 3
Last reply 11/14/2011 - 9:44pm
Replies by: cwu, Anonymous, FormerCaregiver

So it seems that I am once again back to the drawing board and looking for what might be next---we have been through plan A, B, C, D (and then some)....and need a new one so I am hoping some of your keen minds may have some insight to throw at it.  I have been doing this (stage IV) for nearly 9 years with an on again, off again success rate and thankfully, am still here and very much alive and kicking.  However, I have not managed to kick this crappy disease out of the ole' ballpark yet and really need to do so.

I have done bio-chemo, years of IL-2 maintenance, more surgeries than I have fingers, a PLX trial and Ip bui; I started this battle with lung/bone mets and plenty of other sub q bumps but have managed to whittle it down to pesky lumps that keep appearing either in nodes or muscles, arms/torso/axila. I completed Ipi in Aug. and it "worked" on a deep pectoral mass that we have been dealing with for awhile but another small focal appeared in a bicep.  It was surgically removed and we were hoping all was well but another lesion has appeared in my shoulder---damn.  So, now what?  We are trying for reinduction with Ipi but it is uncertain that insurace will approve it.  Ipi was very easy for me with little to no side effects, and I seemed to have some response so hoping a repeated dose may get my immune system in gear.  I have had very strong immune responses to IL-2 so it was thought I may be a good Ipi responder but docs feel that 10 mg. would be a much better situation for my case but clearly isn't available.  They are also suggesting a return to PLX as some are having a secondary positive response---I responded the first time, quickly, but had horrific side effects and am not enthusiastic about a repeat performance and don't see it as a path to cure.

Any other trials out there that are encouraging and open to those of us that have been around the treatment block so to speak? Northern California based so looking as local as possible first but open to whatever it takes.  Appreciate any input and creative thinking here!


 All be well and keep fighting!

Hope is the most powerful drug

Login or register to post replies.

LynnLuc's picture
Replies 2
Last reply 11/13/2011 - 6:27pm
Replies by: LynnLuc, Anonymous


Nov. 13, 2011 20:30 UTC

Plexxikon Novel Agents Aim to Address Cancer Treatment in New Ways

—PLX3397 Cancer Program Targets Tumor Microenvironment—

—Next Generation BRAF Inhibitors Profiled—



BERKELEY, Calif.--(BUSINESS WIRE)-- Plexxikon Inc., a member of Daiichi Sankyo Group, today announced scientific findings from two key programs in its oncology pipeline. First, findings from preclinical studies showed that treatment with a novel oral agent, PLX3397, re-programmed the tumor microenvironment, supporting further development of this single agent treatment for certain cancers and malignancies such as prostate cancer. In another presentation, Plexxikon researchers characterized the discovery of next generation BRAF inhibitors based on a preclinical model showing that these new inhibitors avoided the drug-induced skin lesions (cutaneous squamous cell carcinoma) observed with other BRAF inhibitors. These scientific findings were presented during the AACR-NCI-EORTC International Conference on Molecular Targets and Cancer Therapeutics, taking place November 12-16, 2011 in San Francisco.

“We have generated a significant set of preclinical data supporting the advancement of PLX3397 as a potential treatment for cancers in which the tumor microenvironment plays an essential role. These new data underscore our plan to explore the utility of PLX3397 as a single agent in another malignancy—prostate cancer,” said Gideon E. Bollag, Ph.D., senior vice president of Plexxikon. “Additionally, in the field of BRAF research, our goal is to build upon the significant success of first generation BRAF inhibitors in order to improve safety and efficacy of these treatments for BRAF mutation positive patients. Our preclinical research shows that our new ‘paradox breakers’ may be able to achieve those goals in the form of a single drug.”


New scientific findings were presented for Plexxikon’s novel agent, PLX3397, an oral drug candidate targeting macrophages and osteoclasts. These cells play an important role in the tumor microenvironment, particularly in enabling the metastases of cancer to bone which can result in significant pain and disability. PLX3397 was shown to alter the tumor microenvironment and even re-program certain immune cells involved in killing cancer cells. Specifically, the findings showed:

  • Significant tumor growth inhibition, reduction in cancer bone pain and prevention of pathologic bone remodeling in preclinical studies of prostate cancer, conducted by collaborators led by Dr. Pat Mantyh at the University of Arizona College of Medicine.
  • Increased tumor cell death and decreased tumor burden by decreasing macrophage and increasing cytotoxic T-cell infiltration in preclinical studies of malignant mesothelioma, conducted by collaborators led by Dr. Lisa Coussens at the University of California, San Francisco.

PLX3397 is currently in a Phase 2 study in Hodgkin lymphoma. Additional Phase 2 studies are planned in a number of other cancers, including glioblastoma, acute myelogenous leukemia, metastatic breast cancer and prostate cancer.

Next Generation BRAF Inhibitors

Plexxikon scientists have discovered novel agents, called ‘paradox breakers’, with potential to address the drug-induced skin lesion side effect, and improve treatment durability, compared to first generation BRAF inhibitors. Specifically, their preclinical findings identified novel mechanisms that showed:

  • Following the paradoxical re-activation of a key signaling pathway involved in tumor growth in RAS mutant tumors, first generation BRAF inhibitors induced up-regulation of ligands for the HER family of receptors, potentially explaining disease progression.
  • First generation BRAF inhibitors also induced growth of skin cells carrying pre-existing oncogenes, observed as cutaneous squamous cell carcinoma in sun exposed skin of melanoma patients. In contrast, data showed that treatment with Plexxikon’s ‘paradox breakers’ did not induce growth of these cells.
  • Separately, combination treatment—using an EGFR inhibitor with a first generation BRAF inhibitor—also prevented these drug-induced skin lesions.

Plexxikon plans to advance its ‘paradox breaker’ by filing an Investigational New Drug (IND) application with the FDA for a Phase 1 clinical trial in 2012.

About Plexxikon

Plexxikon, a member of Daiichi Sankyo Group, is a leader in the structure-guided discovery and development of novel small molecule pharmaceuticals to treat human disease. The company’s lead drug ZelborafTM (vemurafenib/PLX4032) was approved by the FDA in August 2011, and is being co-promoted in the U.S. by Daiichi Sankyo Inc. and Genentech. The company is developing a portfolio of clinical and preclinical stage compounds to address significant unmet medical needs in oncology, as well as in several other therapeutic indications. Plexxikon’s Scaffold-Based Drug DiscoveryTM platform integrates multiple state-of-the-art technologies, including structural screening as a key component that provides a significant competitive advantage over other drug discovery approaches.

For more information, please visit

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.

NYKaren's picture
Replies 7
Last reply 11/14/2011 - 8:35pm

Hi everyone,

Well, here we go again, back to Yale/New Haven tomorrow.  Had IL-2 in September (in hosp. one week, one week home to recover, repeat).

They only repeat the regimen if scans show stable or improved.  Mine seem to show improved, so I'm off again.

I'm quite concerned because although my insides seem ok for now, and nothing's lighting up on the PET, I've been noticing a few tiny new satilites on my face.  in one area, there are 3 or 4 tiny black dots, never had that before.  They weren't even there when I saw Dr. Wolchuk 2 weeks ago.  I re-read all my reports that I could get my hands on, and on the first biopsy after the recurrence, it specifically says that the mel had traveled into the local lymphatic system.  We all have a lymphatic system right below our skin.  Ironically, the very act of excisional surgery seems to have "spilled" melanoma cells into that system.  

I keep applying Aldera and praying that this round will kill anything remaining...but there's always that worry that this really isn't it.  And it's so worrisome because there's one in my ear now...what happens if they go inside my ear where I can't see them?  All questions for Dr. Sznol tomorrow.

So I'm very happy to go and be knocked on my ass again, and I'm anxious about  going and getting knocked on my ass again!  All natural feelings, I'm sure, just a little unerving.  

I hope to post from the hosital--off now to buy banannas and a case of water.


Login or register to post replies.