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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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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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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Anonymous's picture
Replies 8
Last reply 2/16/2014 - 5:57pm

Anyone familiar with Mohs where the first layer was down to the fat layer, silver dollar size.  On my face, 25 stituches externally.  I am in shock, scared and need some suggestions or comments from someone who can explain why just one layer, so deep.  Not sure what happens next, other than wiating for pathology.  Mohs surgeon said to call them in one week.  

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Anonymous's picture
Anonymous
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? 

Shelbie

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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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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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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 great...skin 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 questions...am 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!!!!

Josh

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

Hello

 

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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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
 
 
 

TAKE-HOME MESSAGE

  • 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

 
ABSTRACT

Background

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.

Methods

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.

Findings

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).

Interpretation

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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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
 
 
 

TAKE-HOME MESSAGE

  • 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

 
ABSTRACT

Purpose

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.

Results

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.

Conclusions

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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