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
LynnLuc's picture
Replies 11
Last reply 11/14/2011 - 1:52pm

There is serious talk that they will be using  10 Mg as the most likely standard. And reinduction is probably going to be used regualrly for previous responders...I am not a ipi person but thought it was a tidbit you might like. Also a patient who had 3 or 4 doses and then nothing else was still regressing at 38 weeks with no further ipi.

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.

Karolina's picture
Replies 23
Last reply 11/14/2011 - 9:19am


My friend has found out that she has a nodular melanoma. Unfortunately I did not find a lot of info about this unusual type of melanoma... most of the information available is very general and probably more relevant for any other type of melanoma... i am specifically looking for information regarding the prognosis of nodular melanoma, if within a month a lump has grown back on my friend's neck and was 200mm big! however, this 200mm does not refer to how deep it grown back. i don't know how deep it grown back because the doctor who looks after my friend is not very precise!!!

I just want to find out some more details information as to how nodular melanoma needs to be treated and more importantly, what is the suggested timescale for all treatments.


I would be very grateful for any additional information.


Best to all



Login or register to post replies.

Gene_S's picture
Replies 9
Last reply 11/14/2011 - 9:00am

Gene had his 36 week scans and we got the great results of over 63% regression with some lesions being totally gone.  He is on the maintenance phase of the Ipi and gets infusions every 12 weeks after the initial 4 infusions  while taking the GMCSF self injections for 14 days then 7 off the entire time.

Here's to hoping for NED sometime in the near future.

In November 2010 he was diagnosed Stage IV and things were looking pretty bleak and now we can see the light at the end of the tunnel.

Here's hoping this helps someone else see the glimmer of hope with this drug and that it will give others hope in there medications as well.  I hope the other warriors of this disease can continue to fight and beat it.

Judy (loving wife and caregiver of Gene)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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.

cwu's picture
Replies 9
Last reply 11/13/2011 - 4:37pm
Replies by: cwu, NYKaren, paul, lhaley

Has anyone used imiquimod (Aldara) for melanoma? Can you let me know where it was used, how it was used, side effects, why it was prescribed, effectiveness,etc? I am looking into this for my father for his in transit mets on his leg. I think there is a trial at UVA for this. 

Thank you, Chau.

Login or register to post replies.

NancyGM's picture
Replies 14
Last reply 11/13/2011 - 8:47am

I don't post often, but still feel very connected to this community. My latest PET confirms that I have been clear since I finished my last round of Temodar for a pulmonary met in December 2007. I feel beyond lucky and my heart goes out to everyone dealing with any stage of this disease!


Login or register to post replies.

You asked what my oncologists plan was for future scans now I've reached 10 years NED. He's suggested PET/CTs every 18- 24 months from here on in. No other comments from him.

Sorry to take so long to reply....I've just worked 2 weeks non-stop and haven't had time to get to the board often.

Good luck....looking forward to seeing your husband post his 10 year NED early next year :)

Stage IIIB
NED since 2001

Login or register to post replies.

beccia1's picture
Replies 3
Last reply 11/13/2011 - 2:57am

the genetic testing indicated that i have the c-kit mutation for exon 11


i was wondewring what tuype of drug is prescribed for that mutation

john b

Login or register to post replies.

Charlie S's picture
Replies 6
Last reply 11/12/2011 - 7:18pm

Spoke with Jerry this afternoon.  He bled out twice over the weekend and had to be revived both times and is stable right now...................a DNR for this guy is Do Not Retreat.

He has a super team in Boston that are on him like scum on a pond and he is responding.

To clarify, he has both complications from melanoma and complications of treatment. Right now, his team is working to stabilize the cascading complications of treatment and actual treatment of disease is probably about another week to ten days out.

For those of you that are unaware, Jerry is the poster boy for ipilimumab in Boston. He was one of the first to get it in development trials before mergers and aquisitions and is one of very few long term documented cases that can be measured not in days, weeks or months, but now years.

He has also been a contibuting voice at the New England Melanoma Foundation throughout his travails. 

Quite the guy, please keep him in your thoughts.


Charlie S



Login or register to post replies.

Jewel's picture
Replies 10
Last reply 11/12/2011 - 6:49pm

Hi Everyone,

It has been one heck of a year for my husband and I.....Nov 2010 found out he had Melanoma.....July 2011 (3) Local recurrances on calf AFTER hip surgery!!! September 2011 ANOTHER WLE and Complete Lymph Node dissection in groin out of 19 nodes 2 macro 1 micro positive. We will be going to Sloan on the 18th for a second opinion and just would like to hear abour your experiences with them. We are coming from the Adirondacks which is a 5 hr drive so it should be interesting. NO EXPERIENCE with the city whatsoever so if you have any "pointers" please let us know. Just would like to hear what all of you have to say.


Thanks for all of your knowledge!!!!



Login or register to post replies.

Lisa13's picture
Replies 8
Last reply 11/12/2011 - 6:17pm

Since finding out I had brain mets a week ago today, I've had some rough days, but now I'm back to hopeful and not giving up.   I also truly believe that if you continue to worry and think the worst, then your attitude and body give up. 

I have the most amazing team ever.  When I first decided against WBR, the neurologist and radiologist both emailed me on Sunday and said "Let's get together on Monday to talk about this more". What Dr. would call on his day off???  I also emailed my radiologist this morning telling him about a small pain I had in my head. He emailed me back 10 minutes later with some questions and found out it "had nothing to do with the small lumps in my head".  Truly amazing how quickly these people get back to you.  They're even hoping that since I've so far had great success with ipi, that it will do it's job of keeping more of anything coming around for awhile.  

All I know is no matter how bad things seem sometimes, these people are doing everything they can and as quickly as they can, to get things done.  This attitude from all these medical Dr's makes me feel like they really care and I think that's hard to come by at times.


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

Login or register to post replies.

I asked my doc a few questions about Anti PD 1 trials -where they at, are the comparable etc  and here is his response...There are three sets of PD-1 trials: the BMS drug, a new drug from Vuragen in Israel, and a newer antibody from Merck. The latter two trials are being done in multiple centers around the world. No way to compare the drugs, since almost all of the patients have received the BMS antibodies.

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.

Tim--MRF's picture
Replies 1
Last reply 11/12/2011 - 4:15pm
Replies by: Lisa13

I was at the annual meeting of the Society for Melanoma Research and had lunch with Annette Cyr from the Melanoma Network of Canada.

Annette mentioned that the governing body in Canada that approves funding for cancer drugs is considering whether or not co cover Yervoy.  MNC is conducting a survey of patients with the purpose of using that survey to provide information to that governing body.

If you live in Canada and have been impacted by melanoma, please consider participating in this survey or otherwise getting involved in this issue.  

You may access the survey here:

The web site for the governing body is here:

I have no information about the inclination of Canada to cover Yervoy, but as you may know, the British Health Service has declined to cover this drug.

Happy to answer any questions, to the extent that I can.




Login or register to post replies.

LibbyinVA's picture
Replies 7
Last reply 11/12/2011 - 10:12am
Replies by: Anonymous, LibbyinVA, Tim--MRF, justlittleoleme

Does anyone know of a non-profit melanoma group within an hour of Washington, DC that is actively seeking donations?  I have the name of a northern VA corporation that is looking for a group for their annual donation to a non-profit healthcare related foundation.  They personally persent the donation to the organization so it must be located within an hours drive from Washington, DC.  Any help would be appreciated as I live in Richmond, VA and am too far away to suggest the foundation of my choice.


LibbyinVA (Stage IIIB, gratefully NED since 2006)

Never, ever give up hope!

Login or register to post replies.

deardad's picture
Replies 5
Last reply 11/12/2011 - 9:41am

Well I was a bit floored to say the least today. My dad as usual went for his scan results on his own (he wants this way).

According to his scan first month scan results (on paper) he had had a complete metabolic response and the oncologist told my dad (so he says - my dad does have hearing issues) that his tumors were not visible on scan.


Firstly we were confused that CMR was the same as CR - WRONG. He has had a partial response in that all the target leisons are shrinking and none are active on PET 30-70% shrinkage. We also find out that he has 2 nodules in a lung and in the subcutaneous part of the fat near the kidney. We never even knew these ones were there, but apparently they are not new since he started vermurfenib.

So....feeling like we've had a crash, when really the results are still positive. My dad just didn't ask the right questions and we were'nt there to ask them for him. There's so much one needs to learn medically in order to read between the lines of the oncologist.  

Im feeling quite stressed out and sad because my dad was pretty emotional about it all. He understands that the results are still good, but he naively believed that he had no tumors visible on scan. I seems like my dad's MM is very aggressive and I am worried that things will turn nasty quickly. In saying that we won't give up and probably just need to get our heads around this new information and celebrate that things could already be nasty.

What a day in life of this dreaded disease, and I hope I don't offend anyone with my winging, because I know there are many of you out there fighting a tougher battle than my dad at the moment.

Nahmi from Melbourne

Login or register to post replies.