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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soccerchick's picture
Replies 6
Last reply 4/1/2014 - 12:59pm

I posted about a month ago about my fight against this crappy cancer, I had just started the trial for the combo braf and Mek inhibitor trial shoot but can't remember drug company, I have had my lymph nodes removed under arm pit , il2, Ipi radiation and chemo with venafurenib oh and a trial vaccine to start with. Anyway more new moles keep popping up the latest about 2 weeks ago and the tumor on my breast is growing again, it won.t go away, dang it. So Monday I have to have my boob removed with my tumor and spots and hardened skin that has been causing a lot of pain. Hopefully this will do the trick cause my optionsare getting to be slim Pickens. I will have my tumor cells tilled in case I need to have a transplant later. I am so blessedthat in my 2 + years of treatment that my cancer has not spread beyond my breast! original tiumor was on my upper back. I am going to beat this sucker!!!! I have the best support group of family and friends. Wish me luck and prayers,

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My sister has Metastatic Melanoma diagnosed in November 2013 ~ she had numerous tumors / nodules all over her torso, spine, pelvic and ribs. She began taking Zelboraf the end of November and had great success for a few months. Four weeks ago she started finding knots re-appearing on her back and sides. Her oncologist did confirm that the Zelboraf has ran its run and is no longer as effective as hoped (5 1/2 months). He has now started her on the new approved combined drugs of Mekinist & Tafinlar (started today!) I was wondering if anyone has been through this process of taking the combined drug after taking Zelboraf and if so what are the thoughts of the success of this combination. I know it is newly approved and neither drug has been out of clinical trials very long ~ but we are just curious as to what we should expect. Her doctor told her at the "worse" prognosis would be weeks to a couple of months - "best" at a couple of years ~ but his thought of an "average" for her prognosis would be 6-9 months. Thank you for anyone that may have thoughts or experiences to share with this new chemotherapy!!!!! God Bless! 

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Ashley's picture
Replies 3
Last reply 3/29/2014 - 1:06pm
Replies by: Ashley, Gene_S, dvd

Hi Everyone,

My dad just started yervoy last week and last night had a crazy coughing attack.  He has lung mets but has not had any symptoms from the lungs before now.  Has anyone on Yervoy experienced this?  I'm hoping it's the drug working and causing a reaction and killing the mets!  Any thoughts?  I know probably too soon but I'm hoping!



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Anonymous's picture
Replies 12
Last reply 3/31/2014 - 5:11pm

Am newely diagnosed stage 4 with mets in my liver stomach and brain. Been reading all the statistics about the new Treatment like ipi avaliable to us and how they only appear to last for a few months. Now feeling that lost hope cos long term survival looks unlikely. Why can't better drugs be found that will last years?

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I am now six weeks out and healed from surgery, FEELING FINE! Clear PET/CT and MRI. I agreed to be reviewed for the Ipi vs. Interferon trial and got randomized into the 3 mg Ipi arm. I begin next week.

We are very happy to finally be moving forward with treatment, and relieved that I will be getting Ipi, but not too much ;-)

Of course, cue the worrying about side effects.

I've heard the first infusion generally goes well and that it is infusion #2 that triggers effects, if any. I just want to get started, and get this over with. Again, I shake my head that I FEEL FINE and now have to 'willingly' enter into something that will likely make me feel not that can hopefully feel fine for a lot longer.

Terra, Stage IIIB

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Tim C's picture
Replies 3
Last reply 3/28/2014 - 2:43pm
Replies by: Janner, Anonymous

I had a 12mm spot on my back that was discovered during a routine physical exam and had it removed and biopsied by a reputable dermatologist.  The results came back as positive for melanoma.  I was assured it was caught early (it was .3mm deep).  I requested the pathology report but have yet to receive it.  The standard course of action was to excise the surrounding tissue (by a surgeon), which is scheduled for next week.  He would then see me back again in three months.

After perusing this website and others I've read about melanoma specialists, internal melanomas without skin lesions, in situ melanomas that have metasticized to internal organs.  So many questions arise.  The main questions are:  Am I following the correct treatment path?  Not intending to disrespect the dermatology profession, but should I be seeing a cancer specialist?  I'm not the type of person who likes to take a 'wait and see' approach.  Maybe some type of body scan in order just to be sure?  

I understand that my situation is not as dire as others in this forum, but I would appreciate the collective insight of people who have a lot more experience in the subject than I.

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dvd's picture
Replies 9
Last reply 3/29/2014 - 6:34am
Replies by: Anonymous, hbecker, dvd, Ashley, SBeattie

I've been lurking on this Board now and then for the past year, but it's about time I added something to it.

A quick recap of my situation: 66 year old caucasion male with extensive history of sun exposure. Superficial melanoma-in-situ removed from scalp 2006, clean margins, no further workup. Feb 2013 parotid tumor biopsy showed melanoma, otherwise negative PET. March 2013 parotidectomy, neck dissection, 1 of 32 nodes positive. April-May radiation to neck. November - tumor recurrence on neck incision scar, PET shows tumors in neck, leg, lungs, scalp. January 2014 start clinical trial of ipilumimab plus either nivolumab or placebo. Within weeks, all signs and symptoms from tumors resolve. Repeat CT yesterday, results pending.

Late 2013, when things were at their worst, I started writing down some of my thoughts - primarily for my own benefit, to be able to see and re-read what I had been thinking. I shared the blog site with family and a few friends, but don't really have an interest in promoting it. As the site has gained exposure, I have received feedback from some people that the blog helped them in their difficult times with their own challenges (not necessarily melanoma), so I thought I would post the site here, just in case it may be helpful for someone.




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Anonymous's picture
Replies 4
Last reply 3/28/2014 - 2:32pm
Replies by: Janner, Anonymous, dellriol, POW

I am having such a problem with my oncologist at a reputable research facility. All questions are answered with one or two words, or no answer at all. I have tried everything I can to get a conversation going, but have gotten nowhere.

I don't think he realizes it, but the effect on me is cruelty - I have been trying to talk to him for a year and I can't get an answer on how I am doing or what might be ahead for me.

Does anyone have any suggestions.


ps I have a rare melanoma and it is difficult to find information on the web.

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Immunotherapy in Melanoma Before or After BRAF Inhibitors


Research · February 27, 2014


  • Treatment sequence of immunotherapy (IT) used before or after BRAF inhibitors for metastatic melanoma was evaluated. For IT (ipilimumab and IL-2) followed by BRAF inhibitors (n = 32), response rate was 57%, overall survival (OS) was 6.7 months, and progression-free survival was 19.6 months. These results were similar to when BRAF inhibitors were used initially. However, when IT was used after BRAF inhibitors were discontinued, the OS was only 2.9 months.
  • “In this retrospective study, patients who received BRAF inhibitors after ipilimumab had a 57% response rate, in keeping with expected results. However, among a subset of patients receiving IT after progression on BRAF inhibitors, responses were poor. These data suggest that treatment with IT before BRAF inhibitors may be preferable in eligible patients.”

- Richard Bambury, MD



The immunotherapy (IT) agents ipilimumab and interleukin-2 as well as BRAF inhibitors (BRAFi) vemurafenib and dabrafenib, with or without trametinib (MEK inhibitors), are all FDA-approved treatments for BRAF metastatic melanoma, but there are few studies to guide optimal sequencing. This retrospective analysis describes the outcomes of patients treated with either BRAFi before IT or IT before BRAFi.


A cohort of patients treated with BRAFi alone or with MEK inhibitor was retrospectively identified. Response rate (RR), overall survival (OS), and progression-free survival (PFS) were evaluated for the entire cohort, subdivided by BRAFi prior to or after IT.


RR and median PFS and OS calculated from commencement of BRAFi following IT (N = 32) were 57%, 6.7 months (95% confidence interval [CI] = 4.3-9.1 months), and 19.6 months (95% CI = 10.0-undefined months), respectively; whereas for BRAFi initially (N = 242) were 66%, 5.6 months (95% CI = 4.7-6.8 months), and 13.4 months (95% CI = 10.1-17.0 months). Results were similar when controlled for prognostic variables. A total of 193 patients discontinued BRAFi, with OS of 2.9 months (range of 1.8-4.4 months) from day of BRAFi discontinuation. Forty patients subsequently received IT with ipilimumab. Only half could complete 4 doses of ipilimumab; PFS with ipilimumab was 2.7 months (95% CI = 1.8-3.1 months) and OS was 5.0 months (95% CI = 3.0-8.8 months).


In this retrospective analysis, prior treatment with IT does not appear to negatively influence response to BRAFi. Outcomes for IT with ipilimumab following BRAFi discontinuation are poor. Randomized controlled trials are needed to define if sequencing IT prior to BRAFi therapy is superior to sequencing BRAFi prior to IT.

Outcomes of Patients With Metastatic Melanoma Treated With Immunotherapy Prior to or After BRAF Inhibitors
Cancer 2014 Feb 27;[EPub Ahead of Print], A Ackerman, O Klein, DF McDermott, W Wang, N Ibrahim, DP Lawrence, A Gunturi, KT Flaherty, FS Hodi, R Kefford, AM Menzies, MB Atkins, GV Long, RJ Sullivan

From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.


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New Therapies Giving Hope for Patients With Advanced Melanoma
American Academy of Dermatology, 2014 Mar 21


Denver, Colorado; March 21, 2014—Although melanoma—the deadliest form of skin cancer—accounts for less than 5 percent of skin cancer cases, it is responsible for about 75 percent of all skin cancer deaths. When melanoma is detected early and treated before it spreads to the lymph nodes, the five-year survival rate is approximately 98 percent. However, when the disease spreads, the five-year survival rate drops considerably—to 62 percent in patients whose melanoma has spread to the lymph nodes and only 16 percent in patients whose melanoma has spread to other organs.

Within the last three years, significant progress has been made in treating advanced melanoma when the disease has spread beyond the skin. Now, new immunotherapeutics and molecularly targeted therapies are offering a glimmer of hope in stopping the progression of advanced melanoma and prolonging life for patients fighting this deadly disease.


Information is provided by board-certified dermatologist Delphine J. Lee, MD, PhD, FAAD, a professor of immunology at John Wayne Cancer Institute in Santa Monica, Calif.


Prior to 2011, two aggressive therapies were the mainstay of treatment for advanced melanoma that had spread to the lymph nodes or other organs—high-dose IL2 (interleukin 2) and interferon. However, neither drug demonstrated the ability to prolong the lives of melanoma patients. In addition, interferon, which is recommended as a five-year therapy, poses many side effects (including intense and prolonged flu-like symptoms) that many patients cannot tolerate for the long treatment period.

New combination therapy yields higher response rate

Two new melanoma drugs—dabrafenib and trametinib—previously approved in May 2013 for individual use were granted accelerated approval by the Food and Drug Administration (FDA) for use as a combination therapy in January 2014.

  • This FDA program is important because it allows patients earlier access to promising new drugs while the drug manufacturers confirm drug benefits through clinical trials. Initial studies show that 76 percent of patients treated with this combination therapy experienced a reduction in size or disappearance of their melanoma that lasted an average of 10.5 months.


Dabrafenib is a drug that targets a specific gene mutation known as BRAF, which is present in about half of melanomas and causes them to grow. Now, patients with melanoma can be tested for this gene mutation with a biopsy.

  • If patients test positive for this mutation, this personalized cancer therapy can work for them by temporarily blocking one pathway that melanoma uses to spread to other areas of the body (slowing its progression and growth).
  • This is the second BRAF inhibitor drug available to treat advanced melanoma, which Dr. Lee explained brings competition to the market.
    • This helps bring down the cost of this type of drug and makes it more accessible for melanoma patients.


Trametinib works similarly to dabrafenib by blocking another pathway located downstream from BRAF known as MEK, which melanoma also can use to spread the disease to other organs.

  • This is an important new drug because it helps further delay the progression of advanced melanomas that have effectively surpassed the temporary roadblock set up by dabrafenib.

Combination therapy of dabrafenib and trametinib has not been shown to improve overall survival rates, but Dr. Lee explained it is an important new therapy because a higher percentage of melanoma patients have experienced a positive response to this therapy, resulting in an increase in the number of months patients are disease-free before melanoma recurs. For example:

  • The response to this combination therapy is referred to as "Progression-free survival."
    • During this time, patients may experience a quality-of-life improvement and, in some cases, be able to start another therapy that may prolong life.


In March 2011, two new immunotherapeutic drugs that work by helping the immune system fight cancer were introduced for patients with advanced melanoma. Ipilimumab is the first new melanoma drug shown in randomized clinical trials to provide an increased survival rate. This immunotherapeutic drug works by “taking the brakes off” the immune system, causing it to be more active to attack cancer cells. The overall survival advantage is not particularly long, Dr. Lee explained that it is a step in the right direction. Specifically:

  • Studies showed the median overall survival in patients with advanced melanoma taking ipilimumab was 10.1 months, compared to the survival rate of 6.4 months in patients who did not receive ipilimumab.

Stabilized interferon

To make interferon more stable and more tolerable for patients, the stabilizer polyethylene glycol was added, and the new drug called peg-interferon also was introduced in March 2011. Known benefits include:

  • The drug is administered to patients at a lower dose to minimize side effects.
  • Improved side effects allow patients to better tolerate the drug and extend the period of time they can take it.
  • The improved survival benefit is unknown at this time, but Dr. Lee expects the drug could prolong life if the patient can tolerate taking this drug for the recommended five-year period.


In August 2011, vemurafenib was the first BRAF-inhibitor drug introduced to target the BRAF gene mutation. Dr. Lee reviewed the key findings of vemurafenib:

  • Clinical trials of the drug conducted in 2010 showed a very dramatic and quick response when vemurafenib was given to patients whose melanoma had spread to the lungs. In these instances, the tumors on the lungs completely disappeared.
  • In another clinical trial that compared the response of vemurafenib to decarbazine (a chemotherapy drug commonly used before the new melanoma therapies were introduced in 2011), melanoma patients taking vemurafenib lived longer.
    • At six months, the overall survival of patients taking vemurafenib was 84 percent compared to an overall survival of 64 percent for patients taking dacarbazine.
    • As a group, melanoma patients taking vemurafenib lived longer by a few months compared to those patients taking dacarbazine, but Dr. Lee noted that melanoma eventually recurred when the cancer cells learned to bypass the initial roadblock and find a new path to spread to other organs.
  • Dr. Lee believes the use of drugs that target specific pathways contributing to uncontrolled growth, such as vemurafenib or dabrafenib, has a lot of potential in blocking the spread of melanoma and shrinking existing tumors. Equally important, these types of drugs represent the beginning of fine-tuning therapy for advanced melanoma patients by personalizing their treatment.


Another very personalized cancer therapy that is being offered in only select treatment centers across the country is adoptive cell therapy. This labor-intensive therapy for patients with metastatic disease begins by taking and growing the patient’s T cells (cells in the immune system that protect the body from infection and aid in fighting diseases) in a laboratory. Once the supply of T cells has expanded, the cells are then given back to the patient to help the immune system fight melanoma. The protocols may vary slightly from center to center.

Dr. Lee explained that not everyone responds to adoptive cell therapy, but the patients who do —although they're not cured—experience a long-lasting response, which is substantially longer than other melanoma therapies currently available.


With so many new melanoma therapies being introduced, it is important for patients with advanced-stage melanoma to get a few different opinions on their treatment options before making a decision,” said Dr. Lee. “The progress we’ve seen in melanoma therapy has been considerable compared to 10 years ago, and patients have reason to hope for longer survival rates in the future. Any drug that can prolong life — even for a short period of time — and stop the spread of tumor growth gives patients the opportunity to try another therapy or participate in a new clinical trial that could help them live even longer.

Copyright © 2014 American Academy of Dermatology


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Anonymous's picture
Replies 0
Ipilimumab Retreatment in Patients With Pretreated Advanced Melanoma


Research · March 11, 2014


  • In this retrospective analysis of patients previously treated with ipilimumab and noted to have progression on imaging, retreatment with ipilimumab resulted in disease control in 55% of patients, with 42% still alive at 2 years and a median overall survival of 21 months. 
  • Although only a small number of patients were included, this analysis demonstrates that ipilimumab retreatment is possible and can provide continued disease control in a subset of patients with a minimal increase in toxicity.  

- Chris Tully, MD



Retreatment with ipilimumab has been shown to re-establish disease control in some patients with disease progression. Here, we report the efficacy and safety of retreatment with ipilimumab 3 mg kg−1 among patients participating in an expanded access programme in Italy.


Patients who achieved disease control during induction therapy were retreated with ipilimumab upon progression (3 mg kg−1 every 3 weeks for up to four doses), providing they had not experienced toxicity that precluded further dosing. Tumour assessments were conducted after retreatment, and patients were monitored throughout for adverse events.


Of 855 patients treated with ipilimumab, 51 were retreated upon disease progression. Of these, 28 (55%) regained disease control upon retreatment and 42% were alive 2 years after the first induction dose of ipilimumab; median overall survival was 21 months. Eleven patients (22%) had a treatment-related adverse event of any grade during retreatment. These were generally mild-to-moderate and resolved within a median of 4 days. No new types of toxicity were reported.


For patients who meet predefined criteria, retreatment with ipilimumab is generally well tolerated and can translate into clinical benefit. This strategy should be compared with other therapeutic options in randomised controlled trials.

British Journal of Cancer
Ipilimumab Retreatment in Patients With Pretreated Advanced Melanoma: The Expanded Access Programme in Italy
Br. J. Cancer 2014 Mar 11;[EPub Ahead of Print], V Chiarion-Sileni


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Nomograms Can Predict Outcome of Therapeutic Lymphadenectomy in Late-Stage Melanoma


Research · March 10, 2014


  • In this study, a mathematical model was developed to predict the response of patients diagnosed with stage IIIB and IIIC melanoma to therapeutic lymph node dissection. Extracapsular extension and nodular pathology subtypes were good predictors for 2-year recurrence incidence. Age, number of positive lymph nodes, and extracapsular extension were predictors for overall survival. 
  • This mathematical model provides assistance in predicting outcomes in patients with late-stage melanoma and clinically involved lymph nodes.

- Chris Tully, MD


The publisher has made this article available for free until 4/9/2014 12:00:00 AM .

Access this article now


Current staging algorithms in melanoma patients undergoing therapeutic lymph node dissection (LND) fail to accurately distinguish long-term survivors from those at risk of rapid relapse. Our goal was to establish and validate nomograms for predicting both recurrence and survival after LND.


A prospective cohort of stage IIIB and IIIC melanoma patients was ascertained from a tertiary hospital in Brisbane, Australia. Failure-time multivariate analysis identified key factors that, in adjusted combinations, generated nomograms to predict 2-year recurrence and 5-year melanoma-specific survival. The predictive value of these nomograms was further validated in a patient cohort from Rotterdam, The Netherlands.


In 494 Australian patients, number of positive lymph nodes, extra-capsular extension and nodular histopathological subtype were the main independent predictors of 2-year recurrence while age, number of positive nodes and extra-capsular extension were the independent predictors of survival. Predictive value was confirmed in The Netherlands cohort of 331 patients. The nomograms were able to classify patients according to their 2-year recurrence and 5-year survival rates even within each stage III sub-class.


Models that include extra-capsular extension predict outcomes in patients with clinically involved lymph nodes. This tool may help tailor treatment and monitoring of this group of patients.

European Journal of Cancer
Nomograms to Predict Recurrence and Survival in Stage IIIB and IIIC Melanoma After Therapeutic Lymphadenectomy
Eur. J. Cancer 2014 Mar 10;[EPub Ahead of Print], K Khosrotehrani

Copyright © 2014 Elsevier Inc. All rights reserved.


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Leslie'sHusband's picture
Replies 5
Last reply 3/30/2014 - 5:36pm

Les and I are heading to Duke on Monday morning for a consult with Dr. Tyler.  I know that we are going to discuss the clinical trial "Feasibility and Safety of Minimally Invasive Inguinal Lymph Node Dissection in Patients with Melanoma".  Based on conversations with our local surgical oncologist, the "normal" surgery sounds pretty involved for an outpatient surgery.  Moving a muscle, or at least part of a muscle, to cover exposed major blood vessels sounds a little bit on the "involved" side to us.  Les wants to do whatever it takes to make sure that this cancer is out of her body, though. 

We are also going to ask about the E1609 trial as well, though I will admit that I don't like the statistics I'm seeing on the Interferon success rates.  Interferon was the only treatment offered locally.

Any advice on what questions to ask would be greatly appreciated.



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out4air's picture
Replies 2
Last reply 3/28/2014 - 10:14am
Replies by: Anonymous

Many, many people need this drug that cannot get into a clinical trial including my husband.


We are in it to win it!

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HelenQLD's picture
Replies 6
Last reply 3/29/2014 - 8:44pm

Mum lost her battle at 7.20pm on 27/3/2014 at home after fighting the black beast for six months after finding out her stage iv diagnosis. 

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