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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starletwoman2007's picture
Replies 9
Last reply 2/11/2014 - 9:06am

I have been to hospital this afternoon and have been told that i cannot have gamma knife radiation cos the brain mets i have are smaill in mass. Am i right in thinking this is better than having large ones or am i just in denial? 




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MaryD's picture
Replies 3
Last reply 2/11/2014 - 3:57am
Replies by: JerryfromFauq, MaryD, kylez

I apologize if this had already been addressed but I haven't been logging in as much lately.  On the former MPIP platform, we used to be able to post our profiles and I wondered if they transferred over to this forum.  If so, not sure how to retrieve mine as I would like to update it.

Thanks for your feedback,



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New Approach Quickly IDs Drug Candidates from Genome Sequence

Mon, 02/10/2014 - 2:45pm
Get today's drug discovery & development headlines and news - Sign up now!
The new method identified a highly potent compound that causes cancer cells to attack themselves and die. (Source: The Scripps Research Institute/Disney lab) The new method identified a highly potent compound that causes cancer cells to attack themselves and die. (Source: The Scripps Research Institute/Disney lab) In research that could ultimately lead to many new medicines, scientists from the Florida campus of The Scripps Research Institute (TSRI) have developed a potentially general approach to design drugs from genome sequence. As a proof of principle, they identified a highly potent compound that causes cancer cells to attack themselves and die.
“This is the first time therapeutic small molecules have been rationally designed from only an RNA sequence—something many doubted could be done,” said Matthew Disney, an associate professor at TSRI who led the study. “In this case, we have shown that that approach allows for specific and unprecedented targeting of an RNA that causes cancer.”
The technique, described in the journal Nature Chemical Biology online ahead of print, was dubbed Inforna.

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

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JoshF's picture
Replies 12
Last reply 2/10/2014 - 12:15pm

Well it's been 2 weeks now that I've been home for last round of IL2. I did another 11 bags which was crazy because docs were pegging me at less the 2nd go around. I managed some side effects a little better...mouth sores etc.. After 2 weeks I feel is smooth as baby butt after major exfoliation. Though I'm itchy, itchy...itchy!! Also, still not creating much salivia which is frustrating...anyone experience that? Just glad to be done and now wait for scans on Feb 17th so just trying to manage that anxiety. Also I don't get results until 19th...usually get same day but doc will be out and trial I'm in has 17th as last day per guidelines.

NowI'm left with all the I responder....if so, is it complete...partial? I know these are things that can't be answered immeadiately, specfically is it duable. Only time will tell so I'm trying to go one step at a time. Also, if I have growth or more disease...what's next? What do I do? Brave souls on this site...I read how much so many of you have gone through and try to prepare myself that this may be my life. Good thing is...this forum is full of support and good advice. So know....I appreciate you all.

Here's to 2014 being a year of great advancements in Melanoma Treatments!!!!


Let's work for better treatments....for a cure!!!!

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POW's picture
Replies 13
Last reply 2/10/2014 - 9:25am
Replies by: Maureen038, JoshF, jim Breitfeller, POW, Anonymous

Does anyone know if Jim Breitfeller is still active on this forum? I haven't seen him post in a while.

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djdumaine's picture
Replies 3
Last reply 2/10/2014 - 9:22am
Replies by: Janner, djdumaine

Hi all ~  It's been a very long time since my last post....which is good, since I've been busy living life!  Last night I found that one of my freckles has become raised, and itchy.  Obviously, since I'm a stage 3 survivor and NED for almost 10 years I know that this is nothing to overlook.  My question is this....should this be a recurrence what would a treatment plan look like since I've already had lymph node involvement 10 years ago?  

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mwcollins's picture
Replies 8
Last reply 2/9/2014 - 9:01pm

After an apple sized tumor removed and a full foot of small intestine removed, Kevin is home! Not only home, but home and NED! The doctor removed the tumor and there were no others to be found! I am a happy camper right now! Time to recover at home and start the 'watch, wait and scan' phase of life. Words cannot describe how grateful I am to all of you for your thoughts, prayers and words of encouragement.

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aquamak's picture
Replies 7
Last reply 2/9/2014 - 8:30pm

I haven’t posted in awhile and things are pretty much quite.  I successfully complete the dendritic cell vaccine trial at Memorial Sloan Kettering Cancer Center and I hope I get some type of benefit from it even though it was only a Phase 1.  The research doctors there are very optimistic about this type of treatment because it is supposed to “train” your body’s own immune system to identify and destroy melanoma cells.  This trail involved me receiving 50 injections in my groin and armpit over a 3 month period.  These injections were made from my own harvested stem cells and were “encoded” with melanoma antigens so that the immune system response was hopefully tailored to recognize only melanoma.

Tomorrow I go for my 9 month scans and hopefully I am still NED from my neck dissection last May.  I feel fine but as you know, every little ache, pain or discomfort sends my mind in a spin.  Luckily, my oncologist schedules the scans for early in the morning and I meet with her in the afternoon for the results.  I still have “scanxiety” wondering what if they find something.

I will report back with my results and hopefully I will be on the way to 1 year NED!

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starletwoman2007's picture
Replies 5
Last reply 2/9/2014 - 7:57pm


Does anyone have any experience of using I want to get on a clinical trial and wonder if there is someone i should contact?



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Janet Lee's picture
Replies 9
Last reply 2/9/2014 - 7:30pm
Replies by: Swanee, MoCedar, POW, Janet Lee, Anonymous

My husband Don and I have participated in a couple of research interviews designed for metastatic melanoma patients and/or caregivers. This researcher recently reached out to us because his client is looking for in-person interviewees in the NYC area in February. He has about ten slots open. If anyone is interested, please let me know (email me at and I'll send you the contact info. They usually pay a little honorarium and seem very reputable.

Janet Lee

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Anonymous's picture
Replies 8
Last reply 2/9/2014 - 7:18pm

I will be having my first ipi infusion on the 14th.  I have read post about some of the side effects.  I know everyone is different and how they tolerate tx.  What side effects did you have?  Any advice anything?  Or suggestions? 

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Anonymous's picture
Replies 2
Last reply 2/9/2014 - 5:14pm
Replies by: POW, NYKaren
Mechanisms of BRAF Inhibitor Resistance in Metastatic Melanoma


Clin. Cancer Res 2014 Jan 24;[EPub Ahead of Print], H Rizos, AM Menzies, GM Pupo, MS Carlino, C Fung, J Hyman, LE Haydu, B Mijatov, TM Becker, SC Boyd, J Howle, S Robyn, JF Thompson, RF Kefford, RA Scolyer, GV Long

Research · February 06, 2014


  • In an attempt to better understand resistance mechanisms in patients with BRAF V600E metastatic melanoma progressing on BRAF inhibitor therapy (vemurafenib or dabrafenib), investigators analyzed tumor samples from resected progressive or new lesions. Almost 80% of resistant tumors had restored MAPK signaling via either copy number gains or new resistance mutations while the other tumors had new or unidentified resistance pathways.
  • This research provides some of the strongest evidence for the complex resistance patterns of BRAF-mutant melanoma and the difficulties in maintaining long-term disease control.

- Chris Tully, MD



Multiple BRAF inhibitor resistance mechanisms have been described, however their relative frequency, clinical correlates, and effect on subsequent therapy have not been assessed in patients with metastatic melanoma.

Experimental Design

Fifty-nine BRAFV600 mutant melanoma metastases from patients treated with dabrafenib or vemurafenib were analyzed. The genetic profile of resistance mechanisms and tumor signaling pathway activity was correlated with clinicopathologic features and therapeutic outcomes.


Resistance mechanisms were identified in 58% progressing tumors and BRAF alterations were common. Gene expression analysis revealed that MAPK activity remained inhibited in 21% of resistant tumors, and the outcomes of patients with these tumors were poor. Resistance mechanisms also occurred in pre-treatment biopsies and heterogeneity of resistance mechanisms occurred within patients and within tumors. There were no responses to subsequent targeted therapy, even when a progressing tumor had a resistance mechanism predicted to be responsive.


Selecting sequential drugs based on the molecular characteristics of a single progressing biopsy is unlikely to provide improved responses, and first-line therapies targeting multiple pathways will be required

Clinical Cancer Research
BRAF Inhibitor Resistance Mechanisms in Metastatic Melanoma; Spectrum and Clinical Impact
Clin. Cancer Res 2014 Jan 24;[EPub Ahead of Print], H Rizos, AM Menzies, GM Pupo, MS Carlino, C Fung, J Hyman, LE Haydu, B Mijatov, TM Becker, SC Boyd, J Howle, S Robyn, JF Thompson, RF Kefford, RA Scolyer, GV Long


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Anonymous's picture
Replies 1
Last reply 2/9/2014 - 4:11pm
Replies by: Janner

I was treated with Temodar for a grade 3 astrocytoma in my brain tumor, a rare but possible side effect of the drug is infertility and development of leukemia. What are the statistics, or how many, if any of you that have been treated have expirienced these side effects? 


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Anonymous's picture
Replies 8
Last reply 2/9/2014 - 1:09pm

Did anyone you know or on this board choose to leave lymph nodes intact when recommended they all be removed and checked for cancer(melanoma or other type)? Does removing them actually extend life expectancy? Does anyone wonder if they were left alone(even with small cancer cells), being part of our body's immune system they would eventually help fight off cancer? 

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Pink's picture
Replies 1
Last reply 2/9/2014 - 12:46pm
Replies by: POW

I see today that Moffitt is going to be one of two hospitals in the US to have a trial using your own T-cells

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