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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mrsmarilyn's picture
Replies 1
Last reply 1/22/2013 - 11:29am
Replies by: POW

My brother received his results from his BRAF testing out of USF - and it states "braf K - "the wild type".  How can he be both K and the wild type.  I thought K was a mutated gene - and wild is not mutated.  Right now he is on yervoy - but needs to know his options - just in case yervoy fails.

Thanks very much-


Sister of Gary'

(Stage IV for 11 years now!)

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Tufty7's picture
Replies 7
Last reply 1/24/2013 - 12:33pm
Replies by: Tufty7, Linny, CarolA

Hi there,

My husband has just had his drain removed after an ALND and is unsure whether he should continue his physio exercises whilst the hole is still open. He is worried that if he discontiues them his arm will seize up as he is experiencing what we believe to be axillary web syndrome which is quite painful. On the other side he is also worried that if he does them it will impede the healing process as the wound will keep reopening as he stretches. Help!!! Also if anyone has any tips for axillary web syndrome or cording that would be extremely helpful too. Thanks :-)

Today is someone's memory for tomorrow. Make it a good one.

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Hi Everybody,

My name is Maggie,

My brother had half his lung removed in November 2 days after christmas he collapsed at work. They thought it was a stroke once they got him to the hospital and did the test they found his melanoma was back 3 tumors on the brain 2 in the chest cavity and one in the neck area all in a month. Merry Christmas to our family right? Yesterday he turned 48 and just finished his 3 weeks of radiation, they are giving him a few weeks off before they start the chemo, he is a very private man and I don't know what to say or do for him except to let him Know I am here for him if he needs me. Everything happened so fast we really did not have anytime to explore any alternitive options so I hope the radiation and chemo are the right avenues to take. This is all new to me and my family and my parents and brother are just listening to what the doctors tell us to do. He is so young I just want to know are we doing the right thing should he go thru with the chemo when it comes time? I would appreciate feed back from anyone who has been dealing with this longer then us. Like I said before we are very new to this. Thanks! 

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islandbreeze's picture
Replies 1
Last reply 1/22/2013 - 7:39am
Replies by: buffcody

I got back home a few days ago and going through the public hospital system is a long,tedious process, I can not go private as I ve no funds or I wouldve found out long ago what this melanoma doing in my body. March 21st I am scheduled for surgery and the morning of surgery is when the scan is done, based on whats seen there would determine the extent of surgery and if they see nothing,I am being advised on getting a PET scan in the USA, the Bahamas doesnt have this available. This scan what I will be getting is injection of blue dye unto my whole lymphatic system, as the lesion was on my loin[trunk] and the cells could be anywhere.

So you know how cancer head goes, Im thinking this process as gone on long enough, I know nothing more then I did after I received my pathology report,the cells could have spread. well I cant worry no more,Ive placed this in God's hands, I cant cope with all the what ifs,ands and buts anymore.I dont even know if I will go back to Nassau for the scan.It was hard enough to come up with a down payment for the scan alone,and if I were told I need chemo,thats another concern,where would the money come for that? I am poor, I am an invalid and need assistance,and now the assistance I was getting from social services ended in Dec 2012.

Maybe I'll lose enough weight to be able to work, as it is osteoarthritis as me limited to almost everything in my life.

Time is a versatile performer. It flies, marches on, heals all wounds, runs out, longer then rope and will tell.

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Rocco's picture
Replies 4
Last reply 1/21/2013 - 11:59pm
Replies by: King, awillett1991, Rocco


It's been a while - thought I'd update folks.  I'm now on a 6 month scanning schedule.  I had scans (MRI/CT) this week, with follow-up appt with my Onc.  MRI = clean, no issues.  Still NED, but the CT showed inflammed/enlarged thyroid as a new issue.  My Onc took additional labs to check thyroid levels.  Results showed that they were way off, so off to the Endocriniologist.

I was blessed to get an appointment the very next morning with the Endo that I had worked with during my ipi side effect/ eye-related issues.  At that time my eyes were reacting as if I had Graves disease, but there were no major issues with my thyroid.  This time the Endo is almost certain I have Graves disease /hyperthyroidism.  Thankfully my eyes don't seem to be involved at this time - and I'm praying it stays that way.  I'm now on meds to try and right things. 

Over the past couple months I've actually had several of the symptoms of Graves/hyperthyroidism, but never looked at them as a whole, always writing each off to something else.  What can I say, I let my guard down since my scans had been clean for a few years now.

So, I'm back in patient mode for a bit, jotting down each little thing to report back to my Endo and Onc. So long as the meds work and my eyes don't get involved, the plan is to stay on the meds for 2 years, testing along the way until it goes into remission (Endo's word not mine).

So now cancer issues for now, just a crappy thyroid!

Hang in there everybody!

-Rocco, IV since 2005, Ipi responder.

Luke 1:37

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mars27's picture
Replies 2
Last reply 2/3/2013 - 11:41am
Replies by: gep, POW

Hi there. Anyone out there on this trial or heard anything about it?

Thank you!

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Jinx's picture
Replies 7
Last reply 1/20/2013 - 6:19pm
Replies by: POW, Gene_S, Josh, Jinx, washoegal


In 2006 I was diagnosed with ocular malanoma in my left eye. Soon there after I had plaque surgery at Jules Stein Eye Institute. I did lose most vision in that eye but was glad to be alive. One year ago in Dec, my yearly CT scan showed 5 small (1.2cm) spots on my abdomine. Six months later in June they showed no growth. This past Dec the CT scan intecated that at least one of the spots had grown (1.7cm) A biopsy was ordered and showed that it was melanoma. 

I have recetly gone to USC Norris Cancer Center and my Doctor there (Dr Wong) has recomended that I start  Yervoy infussion as treatment against the melanoma. I have read so many horrific side effects that I am now seeking others that may have gone through this tratment.

My question is simple...what are your feelings about this treatmeant, and what others might you recomend?

Not sure if my condition makes any difference, but here it is anyway.
I am a 59 year old male in good to great health (other than the melanoma) I am 5'9' and weigh 160. I am on a mostly glutten free diet, very little meat
I exercise 4 to 5 times a week....weight lifting and cycling. Never smoked. I havent even been sick in the last 15 years (the flu was the last illness) 

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NancyGM's picture
Replies 5
Last reply 1/23/2013 - 6:14pm
Replies by: lou2, King, scots, Josh, aldakota22

 I was treated in 2007 with 10 rounds of Temodar and had a full, durable response. I feel very grateful to all those who answered my questions here and my heart goes out to those who are struggling with active disease. I have been lucky beyond measure, thus far. Hope does increase as time goes by and one even finds onesself making plans for the future...

Though nothing can dampen my joy over my long term NED status, I wanted to include some of my struggles with keeping my medical coverage as a warning to others who may face similar obstacles. At 3 years on Social Security disability ( which gave me medicaid/ medicare coverage since I had no insurance), I was sent re-determination papers. I was turned down based on medical improvement. I appealed this decision based on the fact that I had some lingering issues that made full time work difficult and the fact that one needs to be continuously monitored at stage IV of this disease. Though I had letters from my oncologist, former employer, all my records, etc and a lawyer, I lost my case after what stretched into a 2 year ordeal. Now, Social Security wants me to pay back two years worth of benefits. I have filled out a waiver form about this and am waiting on a decision.

So, after loosing my only medical coverage, I decided to leave Montana and that I would move to Oregon,( where I had lived 15 years ago) because I understood that low to moderate income Oregonians were entitled to universal health care under the Oregon Health Plan. I discovered, after quite a process, this is no longer the case and very few single adults are eligible for medicaid.

Then, I returned to Montana where I decided to re-enroll as a University student so I could buy the health insurance offered to students ( which had recently increased 120% for those over 40). I come to find out that Blue Cross/Blue shield, the University provider refuses to cover any bills for a pre-existing condition if there has been a gap in coverage since the last  coverage (I had lost the the medicaid, medicare  less than 4 months ago).

I hope no one else runs into the obstacles I have and I wish everyone here the right to compassionate, fair medical coverage. However, I mostly wish everyone here a glimmer of hope...Some of us, for some reason, are still here after 5 years of being declared NED of stage IV melanoma. Though, some well meaning folks who are not well versed on this disease might think this means one is cured,we know all too well about the dark cloud of our prognosis. However, one may surprise oneself just how much living one can squeeze in even under such conditions of limbo. I wish everyone here the very best and I send my deepest sympathies to those who have lost loved ones.


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awillett1991's picture
Replies 23
Last reply 1/23/2013 - 5:14am

I just ran across this. Linda, you were such an inspiration. You will be missed. Praying for peace for your family at this time.


July 9, 1953 - January 18, 2013
ANDERSON - Linda Lee Protas Haley, age 59, of 710 Timberlake Road, Anderson, SC, passed away on Friday, January 18, 2013 at the Rainey Hospice House.
Born in Chester, PA, she was the daughter of the late Hillman Protas and the late Judith Barbour Protas. She received a Master's Degree in Education and retired as a public school teacher. She was an avid quilter being a member of the Prickly Fingers Quilters Guild. Linda was active with many online melanoma support groups and locally with the AnMed Cancer Support Group, "Surviving The Journey".
She is survived by her loving husband of 37 years, Merritt Samuel "Sam" Haley; one son, Brandon P. Haley and his wife Racheal of Birmingham, AL; a brother, Russell Protas of Delaware; one granddaughter, Savannah "Punkin" Haley; and a number of nieces and nephews.
The family will be at the residence and will receive friends at The McDougald Funeral Home on Sunday, January 20, 2013, from 2:00 pm until 3:00 pm. The funeral service will follow in the Chapel of the funeral home at 3:30 pm with Dr. Peter A. Cohen and Reverend Dwight Greene officiating.
In lieu of flowers, memorials may be made to Melanoma Research Foundation, PO Box 759329, Baltimore, MD 21275.
A message of condolence may be sent by visiting

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POW's picture
Replies 13
Last reply 1/23/2013 - 5:22am

I regret to inform you that my brother entered hospice this week.

Actually, he has been an in-home hospice patient since this all started 6 months ago. But he has become so weak over the last 3 weeks that he can't walk, so he was admitted as an in-patient. Thankfully, he is not in pain. He has some minor pain in his back from a tumor near his kidney, but that's about it.  With his brain tumors, he has periods of mental clarity and mental confusion and his speech aphasia waxes and wanes, being especially bad when he is tired or under stress. He still hasn't given up the fight-- he says that he intends to regain his strength in hospice so he can go home again. But the doctors say that would be a medical miracle. On the other hand, part of him understands the reality of his prognosis, which is why he sold his car and (finally!) made out a will last week. 

When he was first diagnosed in June, he had tumors all over his body including his brain. We were told that he had 4-8 weeks to live. Due to his tremendous will and the availability of Zelboraf and Cyberknife, he had 6 months of a good quality of life. That gave my brother, as well as the rest of the family, time to emotionally adjust to this devestating diagnosis, to make legal and financial plans, and to enjoy some good times together. We will be forever grateful for that.

I want to thank all of you for your help, advice, support, and encouragement over these months. Much as I love my family and friends, I didn't want to overburden them with my problems and my concerns. But you folks understnad the all-consuming nature of this disease and our desperate efforts to "beat the beast". Thank you for being here.

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bikerwife's picture
Replies 6
Last reply 1/20/2013 - 1:06am

I have been posting for over a year now. I apologize to all of you. Jerry emailed me to let me know that the stages only go to four. The doctor that diagnosed Lynn with cancer told us it was stage 5 so I took him at his word. I've never asked our melanoma team what stage it is cause I knew it was bad.

Lynn had 7 brain Mets the first time. Later he had 6 more. He has a met on his kidney and inside chest cavity. He has had tumors pop up all his body. A lot of them disappeared with his Zelobraf. 

I apologize for saying something that wasn't so. This board has been very educational and helpful. I've seen a lot of stage 4 post and thought if there's is that bad my husband's must be worse. Know I think if they can do this could at stage 4 . We can to.

My husband leg has jumped up from 223 to over 300 so I'm feeling Zelobraf is coming to an end although he has no symptoms showing.  What ever stage it is its a fight. 

What God leads u to he will. Lead you through

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FitzChieco's picture
Replies 8
Last reply 1/20/2013 - 6:52pm

Hi,  This site appears to be just we are looking for.  My brother has recently been diagnosed IIc and we have to make the decision about watch and wait or try the peg interferon for 5 years.  My brother, Kevin, has some congitive issues from birth that affect his balance and his short-term memory.  He does fine when he is able to follow a routine but otherwise, he gets confused.  He came through the surgery well and nodes were clear, hence the IIc.  But his initial path report was pretty bad (Clark IV, 5.4 mil and ulcerated.)

My brothers and I have to help Kevin make this decision.  We have several questions.  We are concerned about the side affects completely interfering with his routine and therefore negatively impacting his quality of life.  Questions like:

1.  We have read about memory loss and a sense of confusion while on interferon.  Has anyone experienced this and how bad is it?  does is go away (does full memory return) when treatments are stopped.

2.  Fatigue.  Kevin is a runner.  He is 55 and in great health.  His greatest joy is to run several miles a day.  Is there any way that he would be able to continue with this type of activity?

3.  Results.  Kevin's doctors are indicating that there is some evidence that this treatment has been effective in 15 - 20% of IIc patients.  What do you folks think about the reality of peg interfuron making a difference in the long run.  Doctors have said that the surgery went well and there is a 50/50 chance that it could rear its' ugly head again or never be seen again.


I am sure that these questions have been asked and answered before, but this is all new to us and we really could use some insight from those who have had similar experiences.

Thanks so much for any information.


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Kelli100299's picture
Replies 4
Last reply 1/19/2013 - 9:24pm
Replies by: Janner, Anonymous, Kelli100299

It was a year this month that I was diagnosed...Clark Level 4, Breslow 1.2MM. I remember being scared, upset, confused and sick. There hasn't been a day since that I haven't thought about it or everyone on this board. I had a Pet Scan in October that came back clear, keeping my quarterly Dermatologist visits, so far so good...and saw my Surgeon yesterday and I am healing well. Just wanted to check in with my MPIP friends and let you know that whether you are recently diagnosed or been fighting it for years. Keep your head up, it does get better and you are always in 'someones' thoughts. Much love my MPIP friends....Kelli

Life is ten percent what happens to you and ninety percent how you respond to it. Lou Holtz

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Phase III Randomized Clinical Trial Comparing Tremelimumab With Standard-of-Care Chemotherapy in Patients With Advanced Melanoma


J Clin Oncol. 2013 Jan 7;[Epub Ahead of Print], A Ribas, R Kefford, MA Marshall, et al



Tremelimumab failed to offer an overall survival advantage as first-line treatment of metastatic melanoma, but its longer duration of response may prove beneficial in a subgroup of patients.

Ipilumumab (IPI), a monoclonal antibody that blocks the immunoinhibitory function of CTLA-4, causes a reaction akin to taking the foot off the brake of a car and allowing the immune system to move forward in immune recognition and attack of melanoma cells. Randomized phase III trials of IPI demonstrated a survival advantage and the agent is approved in advanced, metastatic melanoma. A similar antibody, tremelimumab (TREME) was investigated in a phase Iii trial against standard of care chemotherapy, and is reported by Ribas in the Journal of Clinical Oncology online. This study failed to achieve a statistically significant survival endpoint for the antibody although there was a trend favoring the biological.

What are we to make of this seemingly disparate results? In the TREME trial, some patients in the control arm crossed over to receive IPI when that became commercially available in the US, likely improving the outcome for the control group. TREME was fairly toxic, and it is possible that better toxicity management would have allowed more patients to stay on study, receive more therapy, and result in fewer toxic deaths and withdrawals for toxicity. Schedule difference and patient entry criteria could certainly have also played a role. This negative trial should not dampen the enthusiasm for immunotherapy of melanoma but reminds us how careful we must be in designing, enrolling and managing patients in a study evaluating an agent with novel mechanisms of action and toxicity.

OncologySTAT Editorial Team

Tremelimumab, a cytotoxic T-lymphocyte–associated antigen 4–blocking monoclonal antibody, has induced durable objective tumor responses in a subgroup of patients with advanced melanoma in early phase I/II trials. Ribas and colleagues conducted a phase III study to compare this novel agent with standard-of-care chemotherapy.

At 114 sites in 24 countries, 655 patients with treatment-naïve, unresectable, stage IIIc or IV melanoma participated in this study; 95% had stage IV disease. They were randomly assigned to receive treatment with tremelimumab or standard-of-care chemotherapy (dacarbazine or temozolomide). Of the 328 patients assigned to treatment with tremelimumab, 40 completed treatment; of the 327 patients assigned to treatment with chemotherapy, 33 completed treatment (22 with dacarbazine and 11 with temozolomide).

Based on an intent-to-treat analysis, the median overall survival for patients treated with tremelimumab was 12.6 months (95% CI, 10.8–14.3), compared with 10.7 months for those treated with chemotherapy (95% CI, 9.4–12.0; HR, 0.88; P = .127). Survival rates at 2 and 3 years were 26.4% (95% CI, 22.0%–31.7%) and 20.7% (95% CI, 16.7%–25.6%), respectively, for patients on tremelimumab, vs 22.7% (95% CI, 18.5%–27.8%) and 17.0% (95% CI, 13.3%–21.7%), respectively, for patients on chemotherapy.

Based on investigator assessment, the objective response rates were similar in both study groups: 10.7% in the tremelimumab arm and 9.8% in the chemotherapy arm. In addition, there were no major differences between the treatments in terms of the rate of complete or partial response. Defined as the time from random assignment to disease progression or death for objective responders, the median response duration was significantly longer among tremelimumab responders than chemotherapy responders (35.8 months vs 13.7 months; P = .0011). The probability of progression-free survival at 6 months was similar in the two treatment arms as well.

The most common adverse events related to the use of tremelimumab were gastrointestinal events (eg, diarrhea), dermatologic events (eg, pruritus and rash), and fatigue. The only grade ≥ 3 events reported in at least 10% of patients were diarrhea (14%) in the tremelimumab arm and neutropenia (10%) in the chemotherapy arm. Patients treated with tremelimumab experienced more cases of rash than did those treated with chemotherapy. Although most patients who discontinued treatment in either group did so because of disease progression, 43 patients stopped taking tremelimumab and 10 patients stopped taking chemotherapy because of adverse events. Finally, 7 deaths in the tremelimumab group and 1 death in the chemotherapy group were considered to be related to treatment.

Based on their study results, Ribas and colleagues concluded that tremelimumab failed to demonstrate a statistically significant overall survival advantage over standard chemotherapy in the first-line treatment of patients with metastatic melanoma. The duration of response was significantly longer after tremelimumab treatment than chemotherapy, although the rate of objective tumor response was similar with both treatments. The investigators believe that the durable responses seen in this trial confirm that tremelimumab may ultimately be of benefit to a subgroup of these patients.

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Anonymous's picture
Replies 4
Last reply 1/24/2013 - 12:21am

BRAF Inhibition Is Associated With Enhanced Melanoma Antigen Expression and a More Favorable Tumor Microenvironment in Patients With Metastatic Melanoma


Clin Cancer Res. 2013 Jan 10;[Epub Ahead of Print], DT Frederick, A Piris, AP Cogdill, ZA Cooper, et al



In patients with metastatic melanoma treated with BRAF-targeted therapy, BRAF inhibition was associated with increased melanoma antigen expression, T-cell infiltrate, and T-cell cytotoxicity, along with decreased immunosuppressive cytokines, providing a more favorable tumor microenvironment.


OncologySTAT Editorial Team

BRAF inhibitors have produced impressive response rates in patients with metastatic melanoma, but early relapse is common. Immunotherapy agents have also been successful, and there is preclinical evidence of synergy between the two therapeutic approaches. Frederick et al evaluated the immune response to BRAF inhibition, alone or combined with MEK inhibition, in patients with metastatic melanoma.

A total of 16 patients with metastatic melanoma containing BRAFV600E received a BRAF inhibitor (vemurafenib) alone or a BRAF inhibitor plus a MEK inhibitor (dabrafenib plus trametinib). Tumor biopsies were performed before treatment, after 10 to 14 days of treatment, and at the time of progression.

BRAF inhibition was associated with increased melanoma antigen expression, with increases of 4.9-, 16.4-, 13.3-, and 14.1-fold in MART, TYRP-1, TYRP-2, and GP100, respectively. Melanoma antigen expression did not differ in biopsies from patients receiving a BRAF inhibitor alone or combined BRAF/MEK inhibition, except for TYRP-2, which was higher in the combination treatment patients. BRAF inhibition was also associated with significant increases in CD8+ T-cell infiltrate.

BRAF inhibition had significant effects on the tumor microenvironment. Immunosuppressive cytokines IL-6 and IL-8 decreased with BRAF inhibition, whereas markers of T-cell cytotoxicity increased. Of interest, markers of T-cell exhaustion (TIM3 and PD1) were also significantly increased with BRAF inhibition, as was expression of the immunosuppressive ligand PDL1.

Patients who progressed on therapy showed an increase in melanoma antigen expression and CD8+ T-cell infiltrate at the time of progression. Of the patients who progressed on BRAF monotherapy, 1 later received combined BRAF/MEK inhibitors. Tumor biopsy after treatment showed restoration of melanoma antigen expression and CD8+ T-cell infiltrate.

The study supports the hypothesis that combined BRAF-targeted therapy and immunotherapy may improve responses in patients with metastatic melanoma. BRAF inhibition enhanced the tumor microenvironment by increasing melanoma antigen expression and markers of T-cell cytotoxicity, while decreasing expression of immunosuppressive cytokines.

The immune response to BRAF inhibition may be limited, however, due to the paradoxical increases in exhaustion markers on T cells and in PDL1 seen in the current study. Further, melanoma antigen expression and CD8+ T-cell infiltrate were suppressed at the time of progression, suggesting reactivation of the MAPK pathway.

These findings suggest that successful combination therapy may require use of pro-immune cytokines, such as IL-2, and immune checkpoint blockade with agents that target CTLA-4, PD1, or PDL1 to augment the immune response to BRAF inhibition. Studies combining BRAF-targeted therapy and immunotherapy are currently underway.




This does not sound like good news.  But aren't people on this forum getting some good results with the braf inhibition?

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