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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kelsta78's picture
Replies 3
Last reply 2/24/2012 - 9:12am
Replies by: Doug-Pepper, Leigh, DonW

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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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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kelsta78's picture
Replies 12
Last reply 2/23/2012 - 3:29pm

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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Hope Returning's picture
Replies 8
Last reply 3/16/2012 - 5:20pm
Replies by: Anonymous, m888g, Theresa123

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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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 keiran.Smalley@moffitt.org

 

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.

Chau

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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.

Chau

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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 ©
Send comments and news tips to news@medscape.net.

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.

Thanks!

alabama girl

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

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