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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cricket's picture
Replies 6
Last reply 11/15/2012 - 6:12am

Can anyone recommend a treament center and melanoma specialist in Charlotte, NC? Thank you!

Cricket

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Roxy1453's picture
Replies 4
Last reply 11/12/2012 - 4:10pm
Replies by: Roxy1453, kylez, NYKaren

Hi all,

I haven't posted much lately but I have a question. I had two rounds of IPPI and developed colitis so I couldn't have the other two doses. Now, 11 months later, I have developed a skin rash. It doesn't really itch though. I called the Dr and he said yes it probably is from the IPPI. Told me to put a steroid cream on it. I didn't think to ask if it will go away and how long that will take. Has anyone else had this and what did you do? It's on my face and looks terrible. I go in next Tues. for a PET Scan so will talk to him more then.

Thanks,

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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islandbreeze's picture
Replies 7
Last reply 11/18/2012 - 10:27pm

Hello I wanted to thank all that replied and brought relief to this distressed mother...I am in Nassau Bahamas and Ive been referred to a surgeon/onc next friday 16th nov. He will most likely want to biopsy my armpits and groin. I am just concerned with side effects or lasting effects from these incisions. I am anxious and can feel panic within me and although Im on anti anxiety & anti depressants my mind and nerves are beginning to freak me out.so im talking it out with you all and hope to get some experienced patients stories replies.

Ive no one with me but I am staying at a cancer care center where other patients are in treatment...watching them I admire thier courage,right now I dont feel strong and I dont know if I can rise up and fight being depressed and scared. I want to live for my children..and I miss them so much my mom is taking care of them while im here.

Besides MM Ihave other physical problems that need to be addressed..and really want a cat scan so they can see whats all going on and get treatment for it..

Im exhausted and fatigued all the time and it takes so much effort to move about.When evening comes I have had enough of the day even if I havent done much..just walking from my room to the tv area where i get online takes it toll.

Anyway, 

I pray for strength for the patients on this site as well as my own.

Time is a versatile performer. It flies, marches on, heals all wounds, runs out, longer then rope and will tell.

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mama1960's picture
Replies 2
Last reply 11/13/2012 - 9:56am
Replies by: Tina D, Janner

I had lymph nod dissection, right groin, five weeks ago. Stillhave very little appetite. Anyone else experience this?

It is what it is.

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Hi, everyone.   I'm not sure if this has been covered on this board  befrore.  My latest MRI shows new activity in a brain tumor that has already been Gamma Knifed back in February.   Has anyone had this done or have any knowledge of risks?  I'm on my 4th month of ZEL and all other tumors (lungs, stomach, bone) have shrunk or disappeared, including 2 other brain mets....a little frustrating.  Any input would be appreciated

Thanks

FrankD Brooklyn

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susanr's picture
Replies 23
Last reply 6/11/2014 - 1:46am

Hello everyone.  I am trying to convince my brother to pursue the Anti PD-1 trials.  I feel like I am going into court and need all my evidence in order to present to the judge...him. LOL !!!  He thinks of trials as being in a " lab treated like a guinea pig". He is stage IV. as of 2/2012 He had yervoy 12/2011....did not help.  last 6 mths has had some response to chemo ( temodor, abraxane, carbo, nexavar)  over past few weeks doc. feels abdominal tumor now bigger.  I feel chemo is done...and not much left on the list to give.  I feel the PD1 trials are way to go.  If he is a candidate. He is braf neg. I am in process of filling in his profile, I know it helps everyone to give an opinion.  Some questions I have for now....will have more.  I appreciate everyone who is on the trial for some advice. 

1) If you failed Yervoy did you respond on the trial.

2) How many of you or know of patients that did well on this trial

3) Is there a placebo involved or does everyone get the drug.

 

Thanks for your time and help. 

Susan

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Anonymous's picture
Anonymous
Replies 0

 

Very interesting data concerning venurafenib survival statistics from the phase I trial.

 http://www.heraldonline.com/2012/11/08/4400762/plexxikon-announces-three-year.html

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Snickers60's picture
Replies 1
Last reply 11/11/2012 - 6:09pm
Replies by: JerryfromFauq

MY WONDERFUL WARRIOR WAYNE and ME at Orange Beach, AL -  April 2010.    YEAH, we know - NO MORE BEACH  !!!   :-(((

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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Glory to God in the highest !   We just got biopsy results back from the pesky little spot on Wayne's leg that kept showing up in the PET.  It was NOT MELLY !!!!!!   That means that in ONLY 7 weeks, Wayne was CANCER FREE in JUNE when we first got the results showing all Melly was gone but this one tiny spot.   They watched it since then, and it kept reappearing on the PET, so they did a biopsy last Friday and we just got results ! 

IT IS A STRANGE BENIGN TUMOR that they will still probably removed called :    Cellular Schwannomas

WE ARE OVER THE MOON - OUT THE ROOF - ON TOP OF THE WORLD !!!   DR. B. says he has made MELANOMA HISTORY ON ZEL at MDANDERSON. That he has never ever had another patient respond this well.   WOW...............

WE ONLY PRAY THIS WILL GIVE SOMEONE OUT THERE "THE HOPE" they need to hang in there...keep on keeping on.   KEEP THE FAITH ! 

To OUR LORD AND SAVIOR JESUS CHRIST - and THE GREAT PHYSICIAN, WE GIVE ALL THE PRAISE, HONOR AND GLORY ! 

BLESSINGS TO ALL,  smiley

Nancy (Devoted wife of 3 X warrior Wayne)   GOD BLESS HIM - HE HAS BEEN A WONDERUL WARRIOR !

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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Maggie23's picture
Replies 4
Last reply 11/11/2012 - 9:35pm
Replies by: Maggie23, Tina D, Richard_K, jmmm

Hi Everyone,

I have been following this site for a while and all of the posts and information have been extremely helpful.  I have a question that I thought you melanoma gurus may be able to answer.  Is it possible for someone diagnosed at stage IV to become NED if the tumors are not able to be removed surgically?  I have seen wonderful posts about others becoming NED but each one of them mentions having surgery.  I have never seen a post about NED without the surgery. 

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JoshF's picture
Replies 13
Last reply 11/9/2012 - 3:16pm
Replies by: mama1960, Mandi0280, Anonymous, JoshF, dellriol, Richard_K, audgator

Just had scan recently and was NED!! That puts at 18 months!!! My onc says 2 year and 5 year are key dates. I typically don't post because I have feelings of guilt that I have been doing well while many others are not and that bothers me. Though I was speaking with my oncologist who specializes in Melanoma and he said there are a lot of good things in the pipeline that could make significant impact. He obviously didn't go into great detail but he left me curious....anyone out there have an inkling of what he may be referring to? As we all know this cancer is on the rise in regards to incidence (my step mother was just diagnosed). We need better treatments to deal with this especially when not detected early or for cases like mine where they are unsure if I had a primary dermal leison or an unknown primary. Keep fighting the fight...you're all an inspiration to me!!!!

 

Josh

Let's work for better treatments....for a cure!!!!

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DeniseK's picture
Replies 15
Last reply 11/15/2012 - 3:04am

Well, Pet Scan today, turns out to not be so good.  It appears that there are 5 tumors.  One on my arm which I knew about, one in my right breast next to original surgery site (this one may be a lymph node) and 3 tumors on/in my right lung.  One is very large and looks like it's next to my spine.  I will be discussing surgery tomorrow with my surgeon to hopefully remove all of these!  I've read that people can survive lung involvment for years.  I'm trying to research as much as I can but feel kind of overwhelmed right now.  Can anyone give me any proven treatments or experiences to share that can help me and my family have a better outlook on this?  I need some hope right now that I can beat this!! 

Thanks so much!! 

Love to all my fellow warriors!!

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Drew N's picture
Replies 1
Last reply 11/13/2012 - 11:16am
Replies by: MeNDave

A week or so ago I spent the day at MDA getting bloodwork, X-rays and CT scans. All are normal. 3b for 3+ years.

I had a bad lymph node taken out in December 2008, then 20+ more a month later (all of those were negative). 1 month high dose INF, followed by 2K/day of curcumin, care about sun exposure, and lots of BBQ ribs and brisket. Sex, too.

So... I remain grateful for every day I have on the green side of the grass.

My doctors say that the treatments coming are much better than anything thus far. My secretary's MiL is stage 4 and her treatments have worked so far and with far fewer side effects than many of us have had. Hang in there, everyone.

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A week or so ago I spent the day at MDA getting bloodwork, X-rays and CT scans. All are normal. 3b for 3+ years.

I had a bad lymph node taken out in December 2008, then 20+ more a month later (all of those were negative). 1 month high dose INF, followed by 2K/day of curcumin, care about sun exposure, and lots of BBQ ribs and brisket. Sex, too.

So... I remain grateful for every day I have on the green side of the grass.

My doctors say that the treatments coming are much better than anything thus far. My secretary's MiL is stage 4 and her treatments have worked so far and with far fewer side effects than many of us have had. Hang in there, everyone.

Login or register to post replies.

A week or so ago I spent the day at MDA getting bloodwork, X-rays and CT scans. All are normal. 3b for 3+ years.

I had a bad lymph node taken out in December 2008, then 20+ more a month later (all of those were negative). 1 month high dose INF, followed by 2K/day of curcumin, care about sun exposure, and lots of BBQ ribs and brisket. Sex, too.

So... I remain grateful for every day I have on the green side of the grass.

My doctors say that the treatments coming are much better than anything thus far. My secretary's MiL is stage 4 and her treatments have worked so far and with far fewer side effects than many of us have had. Hang in there, everyone.

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