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
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.

Login or register to post replies.

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? 

Login or register to post replies.

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)

Login or register to post replies.

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


Login or register to post replies.

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


Login or register to post replies.

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? 

Login or register to post replies.

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?

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

bravo591's picture
Replies 4
Last reply 2/7/2014 - 11:12am

Hello All,

I was diagnosed with Stage 1B Melanoma in December of 2013.  The original lesion, located on my leg near my knee, was 1.02mm thick with no ulceration.  A week ago yesterday I had a WLE and an SLN biopsy.

My question is this: the lymph node incision hasn't bothered me at all until today.  When I got home from work tonight I noticed that it is not only very tender, but is swollen as well.  Just wondering if this could be an early sign of lymphedema, or maybe something else? 

My diagnosis came on the second day of a new job, after being unemployed for 2 years.  I really don't want to have to take time off to get the doctor to look at it if it's likely that it's just a bump on the road to healing.  I realize nobody but a doctor can diagnose me, as I said, I'm just trying to determine whether I'll need to take off from work tomorrow.  (Doctor's office is 40 miles from work)

Login or register to post replies.

affguy's picture
Replies 10
Last reply 6/22/2015 - 6:47pm

My Dad had a large ulcerated melanoma tumor removed from his trunk (ribs below armpit) in the summer of 2012 and began interferon treatments that went through May of 2013 (Three 1-month cycles separated by 2-month breaks).  Everything looked clear until recently, with blood appearing in his urine in November and a rather shocking explosion of new, black moles (47 between early December and January 16).  In looking for the cause of the blood, a CT scan showed spots on his liver a couple of weeks ago.  A PET scan last week showed mets to essentially his entire spine and many other bones too, plus overwhelming involvement of his liver (not large tumors, but too many to operate), and his spleen. 

We're now waiting on insurance approval for the dabrafenib and trametinib combination which will hopefully allow him to start treatment the week after next.  The response rate for that combination looks promising, but I'm wondering how long it takes to know whether it's working or not.  My hope is that it's something that starts working quickly and obviously, such that if he's in the minority for whom it doesn't work, he could get started on any other options in short order.  Of course I'm not sure what further options would exist at that point besides ipilimumab.  He has told us that he has no interest in revisiting the side effects he experienced with his interferon treatments.

Login or register to post replies.

I will tell us  my husband experience with pegylated interferon since October 2012.

Side effects that my husband has after the first month and still continue:


dry skin

problems with vision and teeth

joint pains

loss of muscle mass


fatigue, fatigue and fatigue! this is the worst


some anemia

increased triglycerides

increase in transaminases (liver damage)

sometimes dizziness and memory loss

loss of concentration


The first two months were high doses, then half of the dose.

Despite all He is living a normal life, and  working full time.


While there are no guarantees, my husband wanted to do the treatment.


Greetings from Argentina


Login or register to post replies.

Anonymous's picture
Replies 0

Tim or Shelly,


Please confirm that the NY symposium is still going on as schedule Sat, Feb 8th inspite of the weather.



Login or register to post replies.

LibbyinVA's picture
Replies 11
Last reply 2/12/2014 - 10:24am
Replies by: LibbyinVA, Maureen038, POW, Anonymous

I know of a very young woman in the Chicago area who desperately needs a melanoma specialist. She was dx'ed about 18-months ago and has had no follow-up care after her WLE. I should add she has very limited insurance with high co-pays. However, her mother is willing to help out and will do anything to get her daughter to realize it is crucial for her to continue to have follow-up checks. It's tough sometimes to get young people to grasp that melanoma is something you must stay on top of instead of thinking that surgery took care of everything.

Thanks everyone!

Libby (IIIb, NED 2006)

I have melanoma but melanoma does not have me!

Login or register to post replies.