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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Replies by: boot2aboot

"The clinical use of BRAF inhibitors is being hampered by the acquisition of drug resistance. This study demonstrates the potential therapeutic utility of the HSP90 inhibitor (XL888) in 6 different models of vemurafenib resistance. Experimental design: The ability of XL888 to inhibit growth and to induce apoptosis and tumor regression of vemurafenib-resistant melanoma cell lines was demonstrated in vitro and in vivo ."


The heat shock protein-90 inhibitor XL888 overcomes BRAF inhibitor resistance mediated through diverse mechanisms

  1.  * Corresponding Author:
    Keiran S.M. Smalley, Molecular Oncology, The Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL, 33612, United States


This may be a way to get a complete response, with the addition of a HSP90 inhibitor.

This Paper is for BRAF positive Melanoma Patients.


Best regards,


Jimmy B

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natasha's picture
Replies 18
Last reply 2/22/2012 - 9:12am

How big is chance for 2mm Breslow unulcerated Clark 2 melanoma to spread to Lymph nodes?...How it was in your situations? I am going to do  SNB and scared to death..:( Thanks again and again for all you support and information yougiven me.

I am keeping you in my prays.

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sj541's picture
Replies 17
Last reply 2/22/2012 - 8:27am

Hi - I am new to this board but wanted to share my story to see if there is anyone who could offer any advice/suggestions.  My sister (45) was diagnosed with Stage 3 in 2009, did interferon for a year and scans were coming back clean until August 2011 where a spot on the lung was seen.  She did very well on the interferon, some hair loss and fatigue but was still able to  live life.  She started Yervoy (ipi) in September and finished her last dose in mid November.  The first 2 treatments she did great but around the 3rd one she had developed a pretty severe cough.   Around Thanksgiving she was battling severe exhaustion.  By mid December she was in the hospital getting an IV for nourishment as she was so exhausted she couldn't eat.  By end of December she was back in hospital with pnemonia.  Her scans continue to show growth.  We were really hoping to get her into a clincial trial at Sloane Kettering in NYC for the anti PD 1 trial drug but she's too weak to qualify at this point.  She is now home under the care of hospice and has difficulty eating due to her cough.  We are trying to get her to eat but it's hard. We are still praying the Yervoy drug can help but at this point I just don't know.  End of Jan will be 20 weeks on the Yervoy which is known to take a while to work.  Is there anything else we can be doing for her at this point to help her get her strenght back to continue to fight this...I refuse to give up and have this horrible disease take my sister.

thank you


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HelperDaughter's picture
Replies 5
Last reply 2/21/2012 - 11:46pm

Just an update.  we took my mom to hospice today.  history: spot removed in 2003, diagnosed at stage iv in June 2011 by a bump under the biopsy site and a bump in her lymph node.  Turns out it was in both lungs, her small intestine, and her brain (in addition to her lymph node and leg).  All under 3 cm.  She had SRS for a < 1 cm lesion in her brain in the fall, then a craniotomy in December for a brain lesion that was bleeding.  She was bleeding internally from the small intestine tumor, needing 2 units blood weekly, and was risking an obstruction, so she went ahead with a bowel resection January 5. 

I never imagined my mother would never come home.  She suffered so many horrible complications following the bowel surgery.  my understanding is that she developed a bowel leak/fistula so they had to put a drain in and she wears a sac that drains out her bile.  They were unable to fix it despite two endoscopic procedures that are apparently cutting edge at SK (they go in endoscopically and put in these high tech clips that close the tissues and dissolve after the hole heals).  totally neat (if it worked).

she received the most excellent, caring, compassionate care at SK.  i cannot recommend it highly enough.

Anyway, we had scans this week that showed that the cancer recurred in the brain at the spot where it had been before, as well as multiple other spots in her brain, and also went to her stomach and adrenal glands, where it had not been previously.  SK docs told us they would do whatever we wanted to do, but we knew it was time.  my mother expressed two weeks ago that she did not want any more brain surgery, and WBT is crap, from what i understand.

 the new brain mets are what's going to kill her.  she's not all there anymore, and this has happened within the past week to week and a half.  the doctor told us that in essence, because the tumors were in the frontal lobes (bilateral) she was essentially experiencing a lobotomy (i was a little surprised he used that word but hey, i guess it gets the point across).  she can answer yes and no questions (are you in pain being the most important one) but is totally iffy on other stuff.  she recognizes us and can tell us she loves us, for which i continue to be grateful. 

i feel a little weird.  i seem to naturally fall into talking to her as though she's a three year old. she doesn't answer anything other than yes or no questions.  she *seems* to like it when i will say a funny rhyming phrase to her, and she will say it back.  for example, we were talking about it snowing today and i said, "oh no, look at the snow" kind of to myself, just to be silly.  I then turned to her and said it and her face all lights up and she repeats, "oh no, look at the snow." 

eh.  cancer sucks.

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cwu's picture
Replies 7
Last reply 2/21/2012 - 11:44pm
Replies by: dearfoam, cwu, o2bcheri, LynnLuc

Hi everyone,

I wanted to give an update on my dad. My dad finished his last dose of Yervoy around Nov 21 and about a week after he was hospitalized for a severe reaction. He had problems moving his hands and feet and was confused and delirious. He was treated with steroids and salt to stabilize his salt level. The doctors think Yervoy caused imflammation of a part of his brain which controlled his salt level and caused his neuro problems. That was in late Nov/early December. He got out of the hospital and thankfully recovered. The bad news is that Yervoy doesnt seem to work for him. It has been about 24 weeks since he started Yervoy and the tumors on his leg  have gotten bigger. We have decided to stop pursuing treatment since there is nothing promising for him and he doesnt want to go to the hospital. His lesions are getting bigger and they have started to bleed. His MM is still contained in his lower leg.

We are trying to get home hospice to help with the tumor dressing but I was hoping if anyone has advice on how to take care of tumors that are growing and oozing blood. Is it normal for the tumors to bleed? Dad lives with my sister and my sisters and brothers take good care of him so any advice on caring for his tumors and/or hospice is appreciated. I am so afraid of what is coming and dont want him to suffer. I hate this damn disease so much.

Thank you everyone for your advice and support.


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yoopergirl's picture
Replies 16
Last reply 2/21/2012 - 8:46pm

I will be having my third infusion tomorrow and the past 2 days I have had the chills so bad, so am thinking is this due to the Yervoy or did I pick up a bug? Last night about 2 am I shook so bad from the chills that I woke up and took some tylenol and then about 4 am was sweeting so bad had to throw the blankets off, now has anyone had this?? I do have the itching I kinda hope this is just a bug. I will have my labs done before I see the doctor so I assume if it is anything that I should worry about it will show up then. Thanks again, this board has given me so many answers and questions that I have written down for the doctor.    yoopergirl

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Gene_S's picture
Replies 2
Last reply 2/21/2012 - 8:31pm
Replies by: Gene_S, Anonymous

Vemurafenib for Melanoma Approved in Europe

Zosia Chustecka  

 Posted: 02/20/2012

February 20, 2012 — The oral targeted agent vemurafenib (Zelboraf, Roche/Plexxikon) has been approved in Europe for use in the treatment of patients with advanced melanoma whose tumors have a BRAF mutation. The approval was widely expected after the product received a positive recommendation in December 2011 from the European Committee for Medical Products for Human Use.

About 50% of patients with melanoma have this BRAF mutation. A companion diagnostic test, the cobas 4800 BRAF V600 Mutation Test (Roche Molecular Systems), is already commercially available.

Vemurafenib is already available in the United States, where it was approved in August 2011. It is also approved in Brazil, Canada, Israel, New Zealand, and Switzerland. Approval applications are under review in Australia, India, Mexico, and other countries, according to a Plexxikon press release.

Significant Improvement in Survival

The approval was based on a pivotal phase 3 trial (known as BRIM-3) published last year (N Engl J Med. 2011;364:2507-2516), which showed a significant improvement in overall survival.

This trial was conducted in 675 patients with previously untreated unresectable or metastatic melanoma, who had all tested positive for the BRAF mutation. Patients were randomized to receive vemurafenib or standard treatment with dacarbazine.

The trial was halted early because of "compelling efficacy data," according to a Plexxikon statement. Vemurafenib reduced the risk for death by 63% (hazard ratio, 0.37; P < .0001).

A post hoc analysis showed that vemurafenib significantly improved median survival, compared with dacarbazine (13.2 vs 9.6 months). Historically, patients with metastatic melanoma have had a median survival of 6 to 10 months, the company noted.

The safety information about vemurafenib notes that the drug can cause a type of skin cancer — cutaneous squamous cell carcinoma; this adverse event has been previously reported by Medscape Medical News. The labeling for the product urges patients on the drug to check their skin and tell doctors about skin changes, including a new wart, a skin sore, a reddish bump that bleeds or does not heal, or a mole that changes size or color. In addition, patients on the drug should avoid the sun, and cover up when they are outside during the day.

Potential adverse events include severe allergic reactions, severe skin reactions, cardiac events such as QT prolongation (which can be potentially life-threatening), abnormal liver function tests, eye problems, and new melanoma lesions.

Common adverse effects include joint pain, rash, hair loss, tiredness, sunburn or sun sensitivity, nausea, itching, and warts.

© 2012 
Medscape Medical News © WebMD, LLC
Heartwire © WebMD, LLC
WebMD Health News © WebMD, LLC
Reuters Health Information ©
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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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My Mother is Braf negative as well as C-kit negative. She has mucosal melanoma. She just started a reinduction of Yervoy and has her second treatment tomorrow. We are seeing a melanoma specialist in Miami, FL - Dr. Jose Lutsky. My Mom is going on 3 years with this melanoma. Here is a little about her history.


History:  69 yrs old - Primary vulva melanoma braf negative, c-kit negative and negative for ny-eso-1

Yervoy first round stable for 9 month. Recent recurance and moved to spleen.

10/17/2011 large FDG avid  mass gastric antrum 34x36 mm suv=8.6, FDG localization nodule lateral left mid lung pleural based 12mm suv=8.6, at least 4 left lung nodules only the largest of which is fdg avid

1/16/2012  gastric antrum 46x45mm suv=10.5, lateral apect spleen isodense 31mm suv=6.4 w/multiple persispnin hilar nodes 28mm suv=9.6 and 11mm suv=5.1, active pleural base nodule lateral left lung lingula 25mm suv=17.3, adjacent satellite 10mm suv=3.1, large left upper quadrant mass 44x34mm suv=14.0 brain mri - clear

Being that she is beaf and c-kit negative would she be negative for HLA2 or NARS mutations? She I push to have her tested? I need help with a plan B and C. Other then melanoma she is in good shape. Should we look into TIL for her? Take her to Moffitt or Sloan. Any advise would be greatly appreciated.

Thank you!


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AlanM's picture
Replies 3
Last reply 2/21/2012 - 5:43pm
Replies by: Janner, AlanM, Karin L

Prior to interferon induction I did not have any ringing in my ears. Since the induction and 1 month of low dose treatment in the fall of 2010 the ringing has not stopped. I stopped the low dose part of the treatment due to retina damage. Curious if others have had this side effect and if so, did it ever go away? Very distracting......Is there anything to do about it other than just suck it up and live with it?

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Hi everyone, I found this web page and have been doing some research.  I am finding all the info confusing.  But one thing I do know is that I am going to be proactive about this.

I was told 2 days ago that I have Malignant Melanoma.  I didn't even get given a copy of my pathology results of the mole that was cut out of my back.  I did see a surgeon yesterday and asked him if I could see it.  The only info I took in was that it was 1mm and Clark level IV.  I have surgery scheduled for tomorrow to cut out 1cm each side of where the mole was.  I also wasn't given a 'stage' like I see so many other people have been given. 

The surgeon says that is all that should be needed and that I have a 15% chance it could return.  Doesn't really sound that great to me, especially when I have a 4 year old and a 1 year old that are the most precious things to me and no way could I stand it if I thought someone else was going to raise them..  No one could love them as much as me and their father couldn't look after them as well as I could lol (I lost my father young and I don't wish that on anyone). 

I do remember getting a swollen gland under my armpit recently that took a week or two to go down.  Could this be related?  My friend recently went to the doctor with swollen glands and a doctor took a mole out from her in case it was related (which it wasn't lucky for her).

What else can I do to be proactive about this.  I am starting with diet, lots of fruit and veg and am now officially a non-drinker. Any advice appreciated.

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There were posts that Steven O'Day will resume working, but not in the Angeles Clinic, but for months no one gave any update. Does anyone know what happened to Dr. O'Day and whether he is back to work anywhere?

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annem's picture
Replies 4
Last reply 2/21/2012 - 12:47pm
Replies by: dearfoam, KRob, Ali, LynnLuc

I recently posted about my husband, dx stage iv in 1998.  He began to lose weight and complain of headaches about 6 weeks ago.  Had MRI two weeks ago and his oncologist and neurosurgeon diagnosed pacymeningeal metastatic disease.  Neuro asked about taking him back to MD Anderson but I have decided not to do that.  He has been fighting this disease off and on for 14 years.  He had a stroke about a year ago and also suffers from radiation induced dementia from the whole brain radiation done on the initial brain tumor in '98.  The doctors have suggested hospice.  Has anyone had any experience with this diagnosis?   His oncologist has told me that the normal course of the disease is about 3 months and that my husband will probably have another massive stroke.  It is all overwhelming but I do not want him in pain.  Right now he is pretty much the way he has been since the stroke.  Some good days and some not so good.  He is fairly lucid in the mornings but the stroke left him unable to talk or walk without a walker.  Thanks for any info anyone has about this diagnosis.  Anne M, caretake to husband, stage iv

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Anonymous's picture
Replies 5
Last reply 2/21/2012 - 11:47am

Were you told benign mole or minimally atypical and turned out it was actually malignant?  VERY frustrated.

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Abachert's picture
Replies 6
Last reply 2/21/2012 - 8:01am

So I'm not truly a single mom, but my husband works with a collegiate football team which means during the season I basically am because he's at work for 14-17 hours a day and with the new coach, his hours have stayed like this even when they are not in season. We have a 2 year old daughter and I work full time as a sales manager for a hotel. Im stage 3A and we are debating if interferon is what is best for me and the family. I wanted to hear from single parents or families with young children on why you chose to undergo treatment and how it affected family life. Also, for those that are done with treatments, how long did side effects last after you finished and have there been any other issues that have come from doing the interferon? Thanks for the help! I want to be healthy but if they got all the cancer through surgery, is the interferon worth it?

Life is an occasion, rise to it!

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SStamps's picture
Replies 1
Last reply 2/20/2012 - 11:12pm
Replies by: Ali

Had scans done last week brain, lung, spine and leptomeningeal show improvement , but tumor on rib has grown so the Dr wants to start Braf he also said he may reintroduce the ipi. We have use special pharmacy the insurance company works with to get the Braf so we are waiting.   Mickey has been unable to drive since starting the IL2 treatment for the spinal fluid so he spoke with Dr about this the Dr ordered a EEG and Mickey still can't drive. He is bummed about the news but accepting.  His short term memory is off some, a word comes out wrong some and he can't drive because they are afraid he could have a seizure, but besides that he is doing good.  It has almost been a year since the pathology confirmed Stage 4 melanoma.  I feel very bless to have this time with my husband :)


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