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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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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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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I have stage 4 Melanoma that has moved to the lungs, they found 15 nodules on my lungs ,  while I was taking Leukine. The rest of my test show that the rest of my body is clear including the brain. I have since started taking Ippi , will be doing my second treatment on the first of March at James Cancer Center in Columbus Ohio. I know all the side effect it can cause but have yet to have any of them. I was just wondering how effective that it has been for someone else. I know Dr. Kendra said it would get worse before it got better, But how much worse can it get.? I have 3 small school age children who are constantly bring home some kind of germs to share with me, so how do I know the differnce between this and the side effects of the drug?

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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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Anonymous's picture
Replies 1
Last reply 2/22/2012 - 10:14am
Replies by: Shelby - MRF

Just tried to update my existing profile which I've been able to do successfully for years.  Now however, can't even get that page off the menu - gives the following error message - did something happen during the last round of MPIP updates a couple weeks ago??  Thanks for any assistance in fixing this issue!

Page Not Found

We're sorry!

The page you are looking for may not exist or may be under construction. Go Home to try your path again, or use our Search function to find the correct page.

Thank you! 

Luke 1:37

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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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cwu's picture
Replies 10
Last reply 2/22/2012 - 7:50pm

Hi again,

Dad's oncologist mentioned during his last visit that radiation may help with stopping the growth of the tumor and bleeding.  But it can only be done at only a few spots since his tumors are so numerous on his leg.  Has anyone used radiation and what does it involve? Is it painful, what is recovery like, does it help control the tumor and for how long? Should we save this as a last resort for tumors that are out of control?

Thanks again.


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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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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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Replies by: rlaraia, Becky

My daughter was diagnosed stage IIIb at the age of 4. She is 6 now and has had a WLE to remove the melanoma as well as a lymphadenectomy. In October 2011 she completed 1 year of interferon and remains NED at this time. We have been trying to research information since her diagnosis in July 2010 and have not been able to find much of anything. Most of the information about melanoma as it applies to children under the age of 10 has come from only two paraent that we have met along the way who also have children who were diagnosed at a very young age. Her Drs. are as informative as they can be but even the info they provide mainly based on adults. I would like to find other parents who are willing to share their stories and any information resources they have found. We are very greatful for the knowlege we have aquired but feel like there must be more out there. It is simply difficult to grasp that there is no why or how this happens

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alabama girl's picture
Replies 8
Last reply 2/22/2012 - 8:24pm

I was diagnosed with stage 3 melanoma in Nov after my wle and snb surgery. It was in 2 lymph nodes and was 9mm deep on my side. They wanted me to have radiation on my side since it was so deep, but none on the lymph nodes. They want me have a CT scan and labwork every 3 months but now the radiologist wants me to have an ultrasound  on my lymph nodes also every 3 months. What i have read does not mention ultrasound at all? Isn't the ct scan enough? She says it may catch something the CT misses. Has anyone else had ultrasounds? Why do some people with stage 3 have chemo and some not? Just confused and hoping someone has some answers.


alabama girl

. Don't tell God how Big your storm is, Tell the storm how BIg your GOD is!

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kwb's picture
Replies 8
Last reply 2/26/2012 - 4:25pm

I'm new to this bulletin board.  Just found out this morning that I have two (2) more melanomas according to recent biopsies.  Fortunately, both spots are in situ.  However, these latest spots are numbers five and six for me.  Skin doctor and oncologist are befuddled as to what is going on.  PET/CT scans and radiology (lymph nodes) have all come back negative - again, a good thing.

My last major surgery was this past November (2011), which I am still recovering from.  Obviously, I'm concerned about the rapid reoccurrence of these cancerous locations.

Just wanted to share my concern.  Any thoughts would be greatly appreciated.



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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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Leigh's picture
Replies 4
Last reply 2/28/2012 - 5:43pm

Hi all,

I am following your journey's and thinking of you all, praying for a cure for this disease. 

I wonder if I could canvas opinions and experiences with attempting to lose weight for health reasons when you have a hx of melanoma (Stage 1a).  The "Curves" weight management programme (along with others) advises 6 meals involving protein per day, including quite a lot of eggs, cottage cheese and protein shakes to try to manage doing this. 


I have read afew nutrition books related to cancer, and have switched to organic.  I haven't added any vitamins as I am pretty confused by it all to be honest (some say you shouldn't have multivitamins because they are linked to cancer...I have no idea what to believe and dont have time to research it all with two wee children).  In any case, I know too much red meat and ???maybe protein????is a bad thing. 


Would love to hear those in the knows opinion of this.  Thank you for your time if you have got this far!

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James from Sydney's picture
Replies 2
Last reply 2/20/2012 - 10:33pm
Replies by: Mike N, jim Breitfeller

For those of you down under we are organising our inaugural Melanoma walk on March 25 to raise funds for The Melanoma Institute of Australia. They intend to map the entire Melanoma Genome from the largest tissue bank in the world, held at the Institute, they hope to identify all possible Mutations. is the site to register to walk and if you like set up a fundraising page. Melanoma is now the most common Cancer in Australia in the 15 to 44 year age group.

best wishes 


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