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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Tina D's picture
Replies 16
Last reply 12/8/2012 - 7:14pm

I have been thankful for all the helpful posts in response to my question abt possibly going off the Zelboraf in December if scans are still clear. We are thinking we'd like to seek expert opinion and are considering traveling to one of the bigger hospitals to seek opinion. I have heard MD Anderson mentioned favorably many times. We live in SW Indiana, but are completely willing to travel this time to wherever is best. My Oncologist ( though he is absolutely brilliant) has limited experience with Z and before making this big of a decision we'd like to talk with someone who has more experience in this area.

What are your experiences or opinions?

I will not always be this high-maintenance wink  . Just that these decisions are so big to us right now.

Thank you!!

Tina

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Roxy1453's picture
Replies 2
Last reply 11/15/2012 - 5:26am
Replies by: aldakota22, DeniseK

This photo shows my friends and me having fun with pictures and chocking the cancer out of me! I try to always stay positive and have fun!!

Nancy

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

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frankMill's picture
Replies 13
Last reply 11/13/2012 - 11:54am

I've been on the forum several times and want to thank everybody that responded.  You helped me to get through the early diagnosis stage and I am truly grateful for your compassion and advice.

 

I was diagosed with Stage IV Melanoma on August 17th.  Since then, It's been a wild ride.  For several months, I've lived in a state of fear. Endless hours on the internet researching and learning, surgeries, SNB, tests, and as of this week, Mage vaccine at Moffitt.  I'm currently NED and hope to stay that way.  I"ve changed my lifestyle, diet, (anti-angiogenic),  breathing, and attitude.

 

I've come to the realization that stress may be the worst contributor to the spread of melanoma.  Stress hormones stop our body's production of Natural Killer (NK) cells.  Many of the foods we eat everyday don't build our immune system or contribute to angiogenisis (your body building blood supplies to tumors).  Steroids that help treatment side effects kill our immune systems.  The very treatments that we receive such as surgery, radiation, blood tests, scans, or drugs all add to stress or supress the immune system.

 

When we live in a state of joy, our bodies produce NK cells.   The Catch-22 is this, when we are diagnosed with Melanoma, how the hell do we not have stress?  How do we get our bodies re-engaged in the battle?   My new goal is the be the best patient that I can be.  There is no single cure or solution to Melanoma.  I will exercise, eat better, oxigenate with breathing, follow my doctor's plan, thank God for everything that has been given to me, and most importantly try to live a life of joy and happiness.  With each passing day, it's getting easier to breath and smile.  I appreciate hugs more than ever.  I have fun with my grandson playing baseball, I take walks and look up at the cloud formations.  I listen to happy music on the radio.  But most of all, I am so happy to have more time on this side of the dirt.  Melanoma has given me the abiity to appreciate every precious moment of life.

 

Take regular breaks from the stress of melanoma and think about what makes you happy. One of my favorite movies is the Shawshank Redemption.  There is a very memorable line by Tim Robbins, "The solution is simple, really.  Get busy living or get busy dying."

 

Live every moment!

Frank

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Replies by: dellriol

Hey everyone,

My husband was just very recently diagnosed with Stage IV Melanoma. Any information at all will be helpful. He is a fighter, thank God! But both of us are terrified beyond words. The doctors are very knowledgeable but we would love to hear from the actual day by day fighters that are on here.

Love and Hope and FIGHT to everyone here!!

I will have to look at all of the papers again. I'm not sure of all of the terminology yet. What I know as of now is that they are sending a biopsy sample out to be tested if the Mastastasic (spelling?) Melanoma is a mutation since he's only 42. If it is, they want to put him on a pill treatment called Zelboraf to shrink the spots he has. In addition to that, they want to use immunotherapy. They want  to use as little radiation as possible and they don't want to use chemo at all. Has anyone been on/currently on Zelboraf? Is it effective? The docs told us that it's effective almost immediately but it usually stops working in about 6 months. Any suggestions?

+_***************************************************************************************************

My latest response to them:(Jerry)

Basically any cancer is either/or both an oncoprotein overexpression and a DNA mutation.  There are four types of treatment offered.  Surgery, Chemotherapy, Immunology, & radiation.  Generally radiation and normal chemotherapy are of limited value against Melanoma.  The Immunologies (which attempt to jump start ones immune system to attack the cancer cells), approved to date are Interferon (Debated as to value), IL-2 and the Ippi (Yervoy), just approved. (both toxic with about a 20% chance of slowing melanoma down).

  The newest in the chemo line of attack on melanoma is called Targeted Therapy (Chemo targeted at specific onco-overexpressions, DNA mutations and signaling paths)  These are still chemo and are the most valid chemo to date against melanoma.  Zelboraf is the first Targeted chemo to be FDA approved against Melanoma that has the BRAF onco-protein and DNA Mutation. Melanoma has numerous protiens and DNa mutations posssible.  If one does not have the BRAF, then Zelboraf is useless.  If  one has the BRAF, then Zelboraf may be the fastest treatment to get a response.  Zelboraf only attacks one of the melanoma signaling paths/mutations and no one knows how long any one individual will respond.  Will the melanoma find a way around this blockade?  In many cases it will, but not in all cases. 

  If one of the immunologies will work they are usually lookoed at as the first line of attack if one'stumor l oad is not too heavy.  Yervoy may take a long time to show if it is having an effect and often something like Zelboraf can be used to reduce a heavy tumor load and to buy time for the Yervoy to be given as a followup to allow time for it to start working.  (We are wanting to see the results of trials that develop a timing and co-dependence relationship betrween using these together in treatment planning.)

Is y'alls Oncologist a melanoma specialist?  Even the specialist have problems keeping up on all that is now happeniing in the melanoma research.  A general Oncologist cannot keep up on it all.

Yeah, the terminology is not fun to learn.  (I never wantee to learn any!  I didn't even know what an oncologists was until over 6 months after I was diagnosed with melanoma!)

Keep up the learning.  As you noticed, many of  us were told years ago that we would be dead within months.  We learned and fought and some of us are still bugging the Oncologist's.  (Wish they knew why!)

 

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

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JerryfromFauq's picture
Replies 3
Last reply 11/12/2012 - 3:26pm
Replies by: JerryfromFauq, Anonymous

http://www.huffingtonpost.com/andrew-weil-md/turmeric-health-have-a-happ...

Excerpt from the article.

The National Institutes of Health lists 24 current studies on the effects of turmeric and its chief active component, curcumin.

Here's a quick roundup of recent research on both turmeric and curcumin.

  • Curcumin seems to delay liver damage that can eventually lead to cirrhosis, according to preliminary experimental research at the Medical University Graz in Austria.
  • Kansas State University research found that adding certain spices, including turmeric, can reduce the levels of heterocyclic amines -- carcinogenic compounds that are formed when meats are barbecued, boiled or fried -- by up to 40 percent.
  • Rodent studies at the University of Texas indicate that curcumin inhibits the growth of a skin cancer, melanoma and also slows the spread of breast cancer into the lungs.
  • Researchers from the University of South Dakota have found that pretreatment with curcumin makes cancer cells more vulnerable to chemo and radiotherapy.
  • Epidemiologists have hypothesized that the turmeric that is part of daily curries eaten in India may help explain the low rate of Alzheimer's disease in that country. Among people aged 70 to 79, the rate is less than one-quarter that of the United States.

And at least one new study suggests curcumin's value for arthritis treatment. Since arthritis is so common and the results so interesting, it's worth a closer look.

This research, from Italy, was a three-month trial involving 50 patients diagnosed by x-ray with osteoarthritis of the knee.

28.html

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

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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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