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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triciad's picture
Replies 8
Last reply 8/25/2012 - 12:45am
Replies by: Amanda, lhaley, Anonymous, Randy437, Laurie from maine, triciad

Hi Everyone,

I have a friend with brain mets.  Does anyone know which drugs cross the blood-brain barrier?

Thanks so much for your help and keep up the fight!

Tricia

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MattF's picture
Replies 11
Last reply 8/26/2012 - 4:42pm

Ok diagnosed from pathology (shave biopsy) atleast 1mm right cheek.

Has not been excised.

Have appt with general oncologist tomorrow (24 Aug) after referral went from Derm through insurance.

I realized today that MD Anderson is only 3 hours away and is covered under my insurance (Active Duty Military Tricare) and my PCP agreed to put in a referral for MD Anderson Melanoma Skin Center. I called MDA and they said as long as they get a ref (insurance is verified) and medical record they can take new patients within 7 to 14 days.

Am I being nieve? is it that simple to get in there? Am I stupid for ever going down the general oncologist road?

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Snickers60's picture
Replies 26
Last reply 5/12/2013 - 9:41pm

This is the drug that Dr. Bedikian told Wayne they hoped would be available for Wayne in a few months !      Just found out and letting you know ! 

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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rrrule32's picture
Replies 6
Last reply 8/23/2012 - 9:26pm

Has anybody here taken Zelboraf, stopped because of side effects, and restart the Zelboraf and have it not work?

My fiance is stopping Zelboraf for a small amount of time in order to let her nausea pass.  The Zelboraf has been working.  A part of me is worried that when she goes back on that it all of a sudden won't work.

Anyone have this issue?

Thank you,

Travis

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Gene_S's picture
Replies 11
Last reply 8/27/2012 - 1:50pm
Replies by: natasha, Anonymous, Gene_S, Charlie S

"Johnson & Johnson - makers of brands like Neutrogena, Aveeno, Clean & Clear, RoC and Lubriderm - announced that it will reformulate its products to remove dangerous chemicals like formaldehyde-releasers and triclosan. Johnson & Johnson is the first major personal care products manufacturer to take such an important action in favor of its customers' safety."

Possibly these chemicals may contribute to causing melanoma too?  see:

http://action.ewg.org/p/dia/action3/common/public/?action_KEY=1995&tag=201208JJTYFull&utm_source=201208jjthanksfull&utm_medium=email&utm_content=first-link&utm_campaign=toxics

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 24
Last reply 10/28/2012 - 9:53am

I'm relatively newly diagnosed.  Seems like on the internet, everyone who ever had melanoma ends up eventually dying from it.  Is that the case?  Are there 30-40-50 year survival rates, or are there only 5 & 10 year rates because after that most patients pass away from it?

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Snickers60's picture
Replies 1
Last reply 8/22/2012 - 10:09pm
Replies by: awillett1991

Think this may be the PREVENTIVE DRUG Dr. B. is talking about to give 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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We have been contacted by a television reporter who is looking for a particular patient profile.

Do you live in the DC-metro area and have been diagnosed with melanoma on your scalp? Situations where melanomas were caught by a hair stylist or other personal care professional are extra helpful, but not required.

If you meet these guidelines and are willing to talk with a reporter about your story can you drop me a note?

Thanks

Tim--MRF

tturnham@melanoma.org

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Snickers60's picture
Replies 4
Last reply 8/25/2012 - 2:01am
Replies by: Amanda, Anonymous, awillett1991, Charlie S

Have you all heard anything about this ???    I Just wrote about it in my HOME FROM MDA post,  but wanted to bring special attention to it, as Dr. B. toldus again that it will be available by Oct. - Nov. of this year !     It's for people who are completely NED !    Supposedly, it prevents it rather than havingto take chemo/Zel - other kinds of treatment,  forever !   

He will be back at a meeting in late Sept. 2012 for an update of the release date.   We cannot find anything about it on the net.  Would that be fantastic or WHAT !!!   :-)

YA'LL HEARD ANYTHING ABOUT IT FROM YOUR DOC ?

 

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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Snickers60's picture
Replies 2
Last reply 8/22/2012 - 6:48pm
Replies by: Snickers60, Randy437

Wayne got an EXCELLENT PET SCAN REPORT 'except' for a spot on his right leg.  It was there last time, but they did not think it was melly.    This timethe Activtiy of it is up and they do think it is Melly.   They did an MRI and still thought it was Melly.   They are taking a wait/see approach to see if the ZEL will get it and it's just a STUBBORN spot.   It's in the muscle above the knee and out from the femur.    

When they do PET in Oct, if it is still there, they will do biopsy, then surgery if Melly !   At that point, they would expect him to be completely clean of anyquestion of Melly in his body and Dr. B. says the PREVENTIVE MED should be available by then.   Have any of you heard of the MELLY PREVENTIVEMEDS ?      He said they should be released in Oct. or Nov.    OVERALL, we thought this was an excellent report because the PET was even better than before.   NOTHING anywhere else.   CLEAN, CLEAN !  

Anyone here had a MELLY in the muscle ???    THANKS 

Nancy (devoted wife of 3 X Warrior Wayne)   BLESSINGS AND HEALTH TO YOU ALL 

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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Lauri England's picture
Replies 4
Last reply 8/28/2012 - 9:41pm

I have not seen these 2 people note on system for quite sometime.  Does anyone know how they are doing.  I had followed them for over a year and have not been on this website in quite a while.  I do hope all is well with them but does anyone know?  Thank you

Don't sweat the small stuff. There are bigger fish to fry!

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Hi everyone, I'm new to posting.  My step dad had melanoma 15 years ago (Stage 3) and did Interferon for a year.  I remember looking  at this site and getting all the info I could on Melanoma back then.  It really helped me get informed.  

Back in June of this year, he was diagnosed again with stage 4 and it's in his lungs, kidney, spine and esophagus.  They say too many to even count in one of his lungs.  He also had a malignant plural effusion which he had surgery for to drain the fluid in his lungs on 7-30-12.  They injected talc to prevent it building up again.  He is still healing from that and is very, very weak and tired and in a lot of pain all the time.  Now they have scheduled him for another surgery this Thursday 8-23-12 to put a stint in his kidney to try and save it.  And in the meantime he got marked for this "Phase II/III Study of SBRT for localized Spine Metastasis" yesterday (his choice) to try and shrink the tumor in his spine for pain.  The papers they gave out telling about it have some pretty scary sounding side effects.  I've read a lot about it, but I'm still just pretty unsetteled about the whole thing.  He is supposed to get shot with an hour of this SBRT radiation on Monday.  I'm pretty worried and so is my mom.  He really is already in bad shape.  All we (and he) wanted was to focus on QUALITY of life.  We just want him to feel better and for some of his pain to be relieved.

I just wondered if anyone here has been in this study, knows of anyone who has or has information on it.  Is it worth the risk?  

Thank you so much,

Dawn

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JerryfromFauq's picture
Replies 1
Last reply 8/23/2012 - 9:02am
Replies by: walesgirl

 The management of in-transit metastases is challenging, since the treatments and extent of disease vary greatly based on the number, depth, location, and distribution of lesions, and on their biological behavior. A number of different treatment options exist, but there is no level 1 evidence to guide clinical decision-making. Herein we present our institutional treatment algorithm, which allows for individualization based on the patient's presentation.

 

In-Transit Melanoma: An Individualized Approach

 
By Travis E. Grotz, MD1, Aaron S. Mansfield, MD2,3, Lisa A. Kottschade, CNP2,3, Lori A. Erickson, MD4, Lori A. Erickson, MD5, Svetomir N. Markovic, MD, PhD2,3, James W. Jakub, MD1 | December 30, 2011

I'm me, not a statistic. Praying to not be one for years yet.

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audgator's picture
Replies 8
Last reply 9/1/2012 - 9:18pm

...my onc was VERY pleased. I had a CT scan & MRI today a week after the end of the 2nd phase of my anti-PD1 trial at Moffitt. The MRI showed nothing in my brain just as before. We didn't get the radiologist's report before I left but my oncologist showed me the pictures on her computer. Some formerly big spots in my lungs & liver are now little spots and some formerly little spots were not visible.  So, yeah, I was very pleased too. Now on to the maintenance phase, infusion & scans every 3 months.    Dan

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jmmm's picture
Replies 11
Last reply 2/7/2013 - 2:03am
Replies by: JerryfromFauq, Anonymous, jmmm, Janner, Gene_S, washoegal

We are hoping some of the "researchers" on here can help us. My husband had a skin melanoma removed in 1997. He was in the military for 10+ years, spending 14 months in Iraq. With the exception of this time in Iraq, he has spent the majority of his time indoors ( he is an engineer). In 2011, he progressed to stage 4, multiple surgeries, Yervoy, and Zelboraf and right now, he is NED:). We are trying to find some sort of research article stating that the extreme sun exposure he had in Iraq could have contributed to his melanoma spreading. His melanoma specialist has already written a letter stating this fact, but we need some sort of research showing the same. We would be so appreciative of any help that can be offered.

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