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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I am so glad to learn that Melanoma stage IV has been defeated!
Think this reporter needs some education. She needs to learn more about what she is talking about. Can we help her?
While I agree that Dr Weber is a great person, researcher, and melanoma Oncologist, the MRF should get at least part credit for the combination of drugs to fight melanoma. Tim has pushed joint treatment trials for several years and gotten the FDA and Congress to look harder at these efforts.
This is a Good step for certain melanoma cases, certainly not for all, nor even for most! After listening to this, What do your friends think now about youR saying melanoma is a problem? Are you just a whiner? Don't you know anything????
Wish it was true that like the reporter says, 70% of stage IV melanoma's will be contained by this (one type) treatment. She doesn't seem to realize that only 50% of Stage Iv melanoma patients are even eligible to try this treatment, so that reduces to about thirty-five percent maximum that will might have a positive response if it works in the most rosy scenario. She needs to learn more about the many types of melanoma's.

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

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Dave from Ormond's picture
Replies 7
Last reply 2/12/2014 - 2:25pm

I've had some discussions with a few people on here who have had swelling in the Pituitary Gland as a side effect from Yervoy.  I also had swelling which was discovered after 8 days of non-stop headaches from hell.

Here's my question/issue: My pit gland swelling was back in early October.  I was immediately sent to an Endocrinologist and put on Prednisone, Synthroid, and Andro-Gel for low testosterone.  Here it is 4 months later and there is little or no improvement in the function of my pit gland.  Now my ankles are swollen and painful and I've just been told to stop taking the Andro-Gel and see if the swelling goes down.  So my question is to anyone who has had swelling in the pit gland.  Did yours ever start to function again on its own?  I would hate to think that I'm going to have to take these meds for the rest of my life.  I'm only 48 years old!  Is there anything I can do to help kickstart it back up?

Any advice or shared experiences would be greatly appreciated.


The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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POW's picture
Replies 5
Last reply 2/15/2014 - 12:39pm
Replies by: Michelem, benp, Anonymous, Pink, JerryfromFauq

I have read a couple of anecdotal reports of patients who failed ipi then getting anti-PD1 and having success-- even shrinking bone mets. I know that there was a clinical trial a year or so ago specifically designed to see the effect of anti-PD1 in patients who had failed or progressed on ipi. Any one know how it worked out?

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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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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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PFS as a Surrogate Endpoint for Survival in Metastatic Melanoma


Lancet Oncol 2014 Jan 31;[EPub Ahead of Print], KT Flaherty, M Hennig, SJ Lee, PA Ascierto, R Dummer, AMM Eggermont, A Hauschild, R Kefford, JM Kirkwood, GV Long, P Lorigan, A Mackensen, G McArthur, S O'Day, PM Patel, C Robert, D Schadendorf

Research · February 06, 2014


  • In an effort to characterize survival, investigators performed a retrospective analysis using 12 clinical trials enrolling > 4400 patients with metastatic melanoma and demonstrated that PFS can serve as an accurate surrogate for overall survival.
  • This demonstration has potential significant implications for future trial design and novel agent approval, especially if PFS is deemed an appropriate clinical endpoint.

- Chris Tully, MD



Recent phase 3 trials have shown an overall survival benefit in metastatic melanoma. We aimed to assess whether progression-free survival (PFS) could be regarded as a reliable surrogate for overall survival through a meta-analysis of randomised trials.


We systematically reviewed randomised trials comparing treatment regimens in metastatic melanoma that included dacarbazine as the control arm, and which reported both PFS and overall survival with a standard hazard ratio (HR). We correlated HRs for overall survival and PFS, weighted by sample size or by precision of the HR estimate, assuming fixed and random effects. We did sensitivity analyses according to presence of crossover, trial size, and dacarbazine dose.


After screening 1649 reports and meeting abstracts published before Sept 8, 2013, we identified 12 eligible randomised trials that enrolled 4416 patients with metastatic melanoma. Irrespective of weighting strategy, we noted a strong correlation between the treatment effects for PFS and overall survival, which seemed independent of treatment type. Pearson correlation coefficients were 0·71 (95% CI 0·29—0·90) with a random-effects assumption, 0·85 (0·59—0·95) with a fixed-effects assumption, and 0·89 (0·68—0·97) with sample-size weighting. For nine trials without crossover, the correlation coefficient was 0·96 (0·81—0·99), which decreased to 0·93 (0·74—0·98) when two additional trials with less than 50% crossover were included. Inclusion of mature follow-up data after at least 50% crossover (in vemurafenib and dabrafenib phase 3 trials) weakened the PFS to overall survival correlation (0·55, 0·03—0·84). Inclusion of trials with no or little crossover with the random-effects assumption yielded a conservative statement of the PFS to overall survival correlation of 0·85 (0·51—0·96).


PFS can be regarded as a robust surrogate for overall survival in dacarbazine-controlled randomised trials of metastatic melanoma; we postulate that this association will hold as treatment standards evolve and are adopted as the control arm in future trials.


The Lancet Oncology
Surrogate Endpoints for Overall Survival in Metastatic Melanoma: A Meta-Analysis of Randomised Controlled Trials
Lancet Oncol 2014 Jan 31;[EPub Ahead of Print], KT Flaherty, M Hennig, SJ Lee, PA Ascierto, R Dummer, AMM Eggermont, A Hauschild, R Kefford, JM Kirkwood, GV Long, P Lorigan, A Mackensen, G McArthur, S O'Day, PM Patel, C Robert, D Schadendorf


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gaby's picture
Replies 3
Last reply 2/9/2014 - 3:17am
Replies by: JerryfromFauq, kpcollins31, Anonymous



Besides live in fear, I wonder if people who  had melanoma , They will l die sooner or later for melanoma ..


Know someone who had  melanoma and  died for other disease?


My husband was diagnosed two years ago with stage 3A. Now he is 40 years old.


thanks and regards

gaby (argentina)

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Pink's picture
Replies 6
Last reply 2/15/2014 - 3:19pm

It's been almost 3 weeks since 1st infusion, I am starting to get diarrhea and some slight itching. Is this normal so soon? 

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Anonymous's picture
Replies 1
Last reply 2/9/2014 - 4:21am
Replies by: JerryfromFauq

Anyone with liver mets have elevated b12? Normal levels are 200-900. Mine came back at 7500. My Dr. says it must be a lab error. I sure hope so, because everything I read says cirrhosis, hepatitis, liver mets, and leukemia are associated with these extremely high and rare levels. Anyone with liver mets have elevated b12? Any other thoughts on this? Thanks for your comments.

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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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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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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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KYDonna's picture
Replies 8
Last reply 2/11/2014 - 11:35am
Replies by: KYDonna, ecc26, kylez, POW

Hey, has anybody here had any issues with hyperglycemia as a result of dabrafenib (tafinlar)? Hubby's been having nausea/vomiting first thing in the morning which resolves after he eats. Curious if we should start monitoring his blood glucose.

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Anonymous's picture
Replies 10
Last reply 2/14/2014 - 7:08pm
Replies by: lisa215, HopefulOne, DonnaK, Anonymous, Linny, Mat

Hi, I'm newly diagnosed with melanoma in situ and new to the Philadelphia area.  Can someone recommend a Philadelphia area physician?  A dermatologist made my diagnosis and I'd like to schedule my next appointment with a skilled surgeon. 


Thanks very much!

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