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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jtheisen29's picture
Replies 2
Last reply 1/19/2013 - 6:47pm
Replies by: Tina D, JakeinNY


Hi Everyone, 


I don't normally post here but do try everytime my twin sister has her scans for all those melanoma warriors searching for other stories like I did so many times. My sister was diagnosed with stage 3b while 5 months pregnant. She opted to do the 1 month high dose interferon and then the 1 year low dose. Fast forward 3 and a half years she has a beautiful little boy and is fully enjoying life. She just got scan results and she continues to show no evidence of disease. This forum has been such a help when I was helping her after diagnosis and still continues to be while keeping updated on the current treatments that are available. God Bless you all!



Former caregiver to twin sister with stage 3b melanoma

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Anonymous's picture
Replies 9
Last reply 1/18/2013 - 9:48pm
Replies by: Ranisa, Anonymous, Cate, Angela C

Hello to everyone out there. I'm hoping someone can refer me to a melanoma specialist in IL preferably Chicago area. I have heard of a few names and di some research (Dr. Jon Richards came highly recommened) as well as some other from University of Chicago, Rush, and Loyola. Any experiences out there or suggestions?





Let's work for better treatments....for a cure!!!!

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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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I was diagnosed with Melanoma on January 9, 2013. I found a swollen spot in my neck, surgeon thought it was a cyst, but when he went into to remove it realized it was a lymph node. 5 days later I was told it was Melanoma. I have since had a PET scan, no primary was found - only one other node lit up on the scan very close to the original node. I am currently scheduled for a dissection of the nodes in my neck on Monday, January 21.

After reading this board I am wondering if I am jumping into the surgery too quickly. I am met with a medical and surgical oncologist, although not ones in a Melanoma center of excellence instead at our local hospital. Anyone have any advice - my first thought was to go through surgery and then with full diagnosis/prognosis get a second opinion from Mayo before staring any other treatments.

Any help, assistance, guidance would be appreciated!

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Yes !!!!'! Yeah !!! Amen !!! Glory be ! Yippee !!!!
Just saw Dr. B and everything was great for "my wonderful Wayne " :-)))

Noooo melanoma in MRI of Brain or PET Scan and all
Blood work looked great !!!
Whew !!!!!!! Alright !!!! Exhale !!!!!

All praise to God we give !!!

Warrior Wayne and Nancy - dancing a JIG !!!! -)))
Dance with us ????? :-)))

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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NYKaren's picture
Replies 1
Last reply 1/18/2013 - 1:55pm
Replies by: awillett1991

As many of you know, I've been on Zel for about a month now with few side-effects...SCC removed from back of knee, lots of skin tags around my eyes, some joint pain & very slight neurapathy.  I do take Benfotaime(sp??) 500  mg/day,  so perhaps the neurapathy & fatigue would have been worse.

Anyway, past few days, my right elbow has been swollen and painful to even extend arm.  Celebrex (which I had been on for the slight-medium joint pain)  or Alleve alone didn't work, Dilaudid 4mg did absolutely nothing, so Onc. started me on 5 mg. pred/day.  Yesterday (first day)  I stupidly took 10 mg in the a.m. because I forgot the pills I had were 10 mg & didn't break in half plus 2 Alleve morning & night. (pred was and is only 5 mg. in the a.m.)

This morning I woke up depressed (no surprise there) and pain was finaly a little better, and I took the 5 mg. and 2 Alleve.  BTW, I am on nexium 40 mg 2x/day.  A little nauseous, which is a good thing because I've been eating like there's no tomorrow before the Pred.  No nausea on the Zel.

I did take much larger doses of Pred when I had colitis from ipi, then hydrocortosine when I had adrenal insufficiency from the Pred! 

SO, I am interested in hearing others' experiences/dosages w/Zel and Pred.  if it's not for public consumption but you're willing to share, please message me.



Don't Stop Believing

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94z28joe's picture
Replies 8
Last reply 1/18/2013 - 11:40am

I start Ippi as part of the clinical trial for it verses interferon. I will be receiving the 3 mg/kg dose. I'm hoping all goes well. Is there anything I should be aware of before I start and/or during treatment. I'm alittle nervous about starting but if it keeps me NED longer then I'm all for it.

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Snickers60's picture
Replies 3
Last reply 1/18/2013 - 11:05am
Replies by: Tina D, aldakota22, NYKaren

Wayne had his Sedated Brain MRI and PET Scan this morning.    We see Dr. B. at 11 tomorrow morning.  

LITTLE SCANXIETY going on, :-)))  - ,but trusting God to have another good report waiting for us !    

LOTS of very sick people here this visit.    ALWAYS A WAKE UP CALL even when you are NED for a while.

Will update after we see Dr. B tomorrow.     Prayers are appreciated.   

Hope all of you are having a GOOD and TOLERABLE DAY and getting good reports EVERYWHERE !   :-)))

Nancy (devoted wife of 3 X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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annballard's picture
Replies 1
Last reply 1/18/2013 - 1:34am
Replies by: Janner

Hi Everyone,

I'm a 3a since 5/09 an no recurrance to date, however I'm heading to the determatologist tomorrow because of a new black lesion on my chest. My initial melanoma was on my calf. 

Does anyone know if this would this change my stage if it was local only? 

Thanks, Ann

Everything is for the Good.

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Marilynn Eiken's picture
Replies 1
Last reply 1/17/2013 - 8:02pm
Replies by: SStamps

I've written several times regarding my husband Tye.  Started with a mole on his back.  Mets straight to the brain and nowhere else back in Oct of 2011.  WBR and gamma knife followed.  Thought we were chugging along pretty good.  Started leukine last summer.  Then in November a small liver tumor which we irradicated with ablation therapy.  Then  in Dec the MRI showed enough change for the surgeon to say "I think its necrosis but its bigger and i think we should take care of it."  Low and behold.....melanoma grew back right where it seeded before.  Yesterday we actually got to see pictures of it.  We also got to see the "thin film" of black melanoma running along a vessel in the lepto menengies (sorry I know I spelled that wrong).  My husband follows no standard path.  Where there is LMD (leptomenengial disease)  there is usally widespread tumors.  He doesn't have any.  Where there is LMD there are usually symptoms.  He's very stable.  Some "maybe" symptoms but they can be explained through other pathways, ie-hearing has been very bad since surgery.  This happened last surgery and post WBR and hearing returned.  Abruptly after surgery, hearing TERRIBLE.  Has some  back pain.  Has always had some back pain and it doesn't feel different.  This melanoma is so sneaky and tricky. 

We are leaving next week to go to my son's Basic Military Training graduation from the Air Force.  When we return we will start ipi.  I feel its a good choice because we are shooting for long term effects and he has no real "measurable" disease which would be more Zel directed as he has a BRAF mutation.  Plus, it will be another stepping stone to the Anti PD 1 trials.  (Which I learned yesterday are coming to Mayo!)  I finally feel like our whole team of doctors is on the same page as we are.  Treat agressivley, goal is survival! 

I did some research on LMD last nite.   Not good.  A lot of my good warm fuzzies got lost in the literature.  One thing I have learned from this site is we are NOT statistics.  We are individuals and we have to hold on to that hope.  So Im hoping there are other lepto warriors out there that can share their insite with me.  I thought I found some mention from some of you so thought I'd put it out there again since the posts I found were from 2011.  We've got to beat this beast!



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LynnLuc's picture
Replies 5
Last reply 1/17/2013 - 5:46pm
Replies by: Snickers60, POW, Anonymous, DeniseK, deardad


Written 56 minutes ago by Brandon Haley

Quick update. Mom is at the Rainey hospice house in Anderson. She has regained some speech, but it is strained. We have had a couple of short, coherent conversations, but that is all. She is excited to see savannah in the morning. Confusion does not really describe her state of mind, but it is close. We are having some good moments though. We were told that the DEX would be continued as she showed some response. Thank you all, and i will post more tomorrow.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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DeniseK's picture
Replies 18
Last reply 1/17/2013 - 5:38pm

Hello Everyone,
I wanted to update everyone on whats been going on.
First of all the actual wbr was a breeze. I started losing my hair about the 7th treatment pretty bad. I chose to cut it all off and donate it to Love For Locks, I donated over 22 inches. I've always had long hair so being bald has been a trip but a very small price to pay. I have a sexy new redhead wig that was donated to me from a wonderful person named Jill at Artistic Salon in Auburn CA.
Current side effects from wbr are kind of hard to figure out since today is also my 9th day on Z. My head is itching like crazy, this could be because I shaved my head and still have stubbles, my ears, forehead, and head are burned like a sunburn so this could be causing the itching as well. Monday was my last day of dex and I had a horrible headache for a couple days, pretty much debilitating so I took half a dex yesterday and it helped, no dex today and headache is better. Food and drinks tastes really weird, my fiance doesn't think I should cook because I over salt everything :) I've had some nausea but got some Prochlorperazine 10mg and that helps. I'm taking a bunch of pills, in the am 4 z, 1prochlorperazine, 1morphine sulfate 20mg, 1 hydrocodone 10mg, supplements I'm taking are, turmeric, vit c, vit a, vit D3, cod liver oil, benfotiamine, and graviola extract (sour sop). Same at night minus the supplements. Any other supplements you can recommend?
Overall I feel pretty good no joint pain or rash as of yet.
The Zelboraf is kicking butt on my tumors!! I have the tumor on my arm that I'm using for a marker and its shrunk over 50% in a little over a week!! My breathing is easier and hardly any pain in my chest and back!! Its like a miracle!! I know my results could be short lived but I could also be a long term responder like Dick, Al, and many others. Just being a responder is a plus, this at the very least buys me time for the next miracle!!
I've finally been approved to go see Dr. Minor in San Fran, I go this Friday. I'm going to ask about the dosage of Z, clinical trials, any evidence of z working on the brain, and what he recommends on going forward. I'm super excited to get his opinion and visit the big city.
Brain MRI scheduled for February 15, results not until the 21st from the radiolgist but my dr said he'd try to get them to me sooner.
Does the z cause food to taste weird? Hard to determine whats causing what. :)
I've been hoping for an update from Linda Haley has anyone heard?
Lots of love to you all,

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Replies by: JakeinNY, Anonymous, Swanee

A 42 minute audio piece (there is a 1 1/2 minute commercial at about the 18 1/2 minute mark so just fast forward or be patient!) with Dr. Eugene Fine, MD (Albert Einstein, Montefiore Med Ctr) from NYC, who talks about the ketogenic diet for cancer patients, explaining what it is all about, and the results of his RECHARGE trial in which 6 of 10 cancer patients (none with melanoma) had stable disease (5) or a partial regression (1) that everyone should at least listen to and possibly talk to their oncologist about :


Dr. Fine's profile at Albert Einstein College of Medicine


A ketogenic diet trial going on right now that is taking melanoma patients:


I'm sure that everyone (including myself) would love to take a pill and be cured of melanoma and all ailments, but if the answer can be conventional treatment along with "other" methods, then so be it!!!

Do the best you can.

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bikerwife's picture
Replies 3
Last reply 1/17/2013 - 9:26am
Replies by: awillett1991, bikerwife

Lynn had a 8 week checkup today. the leg level jumped from 232 to 320. Dr said that wasn't to bad cause it was far from being the 500 to 700 and even a 1000 like it was before Zelobraf. He said he will scan body in 4 weeks and check blood again then. Lynn has 3 wart looking things he wants dermatologists to remove. We have brain scans next Wed. Hope that turns out good. We were hoping to be NED at next scans but with blood jumping up don't think it will happen.                

I also asked about the on and off treatments with Zelobraf and he said yes some Dr. we're beginning to do it and it may be an option. I also asked about anti pd 1 and he said they would have it in Feb. Guess he was talking about a clinical triall.

What God leads u to he will. Lead you through

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