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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kbrenner's picture
Replies 33
Last reply 9/17/2012 - 11:52pm

Hi all,

I was diagnosed with melanoma just under 2 weeks ago.  My dermatologist has had melanoma herself twice and assured me I'd be alright.  I had a mole removed from my scalp that was .3 centameters and she got me immediately in to see a plastic surgeon who they say is excellant.  Heard nothing but good things about him.  I know this is something I can not mess around with and need to get taken care of ASAP.  So I'm all set for surgery on Sept 10th.  They will be taking a skin graft from my leg for it.  Of course shaving the area on my head, I've always had very long hair so that's a change in itself, but the least of my concerns.  My concern now is am I making the correct choice, or should I be trying to go to the MD Anderson Center?  My Dr. mentioned the Moffit center in Tampa (I live the on the east coast of FL)  But she did not think it was necessary.  I've been reading some of the postings and it sounds like the MD Anderson Center is the place to go and I checked my Insurance and they are a prefered provider.  I do hate to delay, so I'm thinking I should go ahead with the surgery and if needed later follow up with MD Anderson, but I really don't know what to do.  My Derm. has been really supportive and since she's been through this before I feel good about what she tells me and try to stay positive.  However there are still  times I'm afraid it's going to end up being much worse and am worried I'm not going to be around to watch my beautiful little granddaughter grow up.

Kari

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Hi everyone, I've been reading all your posts since my boyfriend was diagnosed march 9, 2012, thought it was time to finally make an account.  I have learned so much here, and am very grateful that you take time out of your day to post your experiences.  Just wanted to say hi, and i hope everyone is feeling good today, and will do so for a long time!

Like i said my boyfriend is the patient. Diagnosed Stage 4, no primary on March 9th, 2012.  He just finished yervoy.  Nothing getting bigger, but not shrinking.  I filled out the profile (i know you all want the newcomers to get that filled out).  Also, he has all over body rash right now and itching like crazy.  He had a small rash just on his hips for a few weeks, but after his 4th infusion rash has gone crazy, as well at the itching.  Benadryl helps some though.  Any questions id be glad to answer. 

 

"Give thanks in all circumstances"

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Hi Kevin,

 

I have not been on the board for a few weeks and trying to catch up.

Have  you finished your WBR...any side effects?? I hope you are doing well.

You are such a strong young man. I pray you & Brenda have a life time of health that takes you on  wonderful adventures.

God Bless You.

Kayla

 

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Tina D's picture
Replies 9
Last reply 8/30/2012 - 5:09pm
Replies by: Tina D, Bruce Davis, Jeff's Mom, Anonymous, awillett1991

I am in my 3rd month of Z. Had an incredible report of NED 2 weeks ago ( still thanking the Lord!) smiley. Have had full range of side effects since starting. Bad rash required almost 3 weeks off after 1st week of tx. Back on at 75% dose since then. Symptoms come and go ( though not as much on the going end of things, haha!). I have joint and muscle pain, sore soles of feet ( that has actually improved over past few days for the first time), photosensitivity, lost most of hair, extreme fatigue, nausea and vomiting, and painful red nodules. But last week, I spent about 8 days in a row down in bed or on the couch for the most part. I am NOT a person who likes to sit around, and this is very difficult to have to do ( Mom of 5, with 2 still scool-age and I homeschool). I had decided that come Monday, I'd call Dr if things hadnt changed. I had pretty good days Mon-Wed evening. Yesterday not so great, and last night temp of 101.2, and N/V, aches, ec. I currently have abt 20 of those painful red nodules.I try to avoid Ibuprofen, ec, for the sake of my liver. I also hate to be a baby abt any of it! I am so thankful to be where I am! But.... should I call the onco? I am his only pt on the drug. He is fanastic, but I do frequent this board to see what others are doing and how hey are making out. Has anyone else had problems with the side effects staying tolerable? If so, what did your Dr recommend? I think the pain and fatigue are my 2 biggest concerns here, and I am perfectly willing to coninue on just as is, if needed. But just wanted to see what everyone else has experienced, and see if there may be something that would help me out.I do take phenergan when the n/v get bad enough, but it puts me to sleep, so I try to avoid it as much as possible.

Thanks all. Any input is greatly appreciated,

Tina

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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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