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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I ave posted a new topic andit has come up on a different board I think it was under view all topics? Stats and can people still see it x

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LaneyMcg's picture
Replies 7
Last reply 12/21/2011 - 1:29am

Hi just a little history, I had my 1st primary just over 5years ago . 2.7mm off upper back snb clear. since then I have had 5moles removed 3 ok, 2 mel in situ. I have recently found a lump on the right side of my head just behind my ear it itches and has bled once. I went to my primary doctor who confirmed it was a mole and has referred me back to my cancer hospital. I know I'm probably running ahead with this but I'm scared because it is a New mole that has appeared out of nowhere like my original primary, unlike the others that I have had removed which were existing. I'm waiting to see the specialist at the moment. I am sorry to be so trivial when so many of you are battling so hard, my thoughts and prayers are with you all.
Love across the pond,
Laney x

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KRob's picture
Replies 7
Last reply 12/30/2011 - 5:24pm

Hello-

Been quite a while since I've been on...so nice to see familiar names and so sorry to hear of several fine folks passing from their MM this past year. This rotten disease has claimed too many good lives, but it's heartening to see that so many others are winning the war. 

Since Christmas is the season of hope, I wanted to share my testimony of survivorship of stage IV mm for almost 7 years (2/05-diagnosis). It's a kick-in-the-gut that day of diagnosis (and for many days after that too) but it's vital to retain and maintain the belief that anything is possible and you do not have to be a statistic! As my dear late dr. told me, "We can talk numbers all day, but they are only going to be grim and give you very little hope...remember, that they are just numbers and don't necessarily represent your individual case." That was the first whisper of possibility that I heard during those early, dark days, and I will forever be thankful for them.

So for those of you who have just recently joined our ranks and those who continue the fight, may you be blessed with abundant hope throughout the coming year (and beyond!). May you find the strength and courage in the days moments you need them, and the guidance and wisdom to choose the paths of treatment you decide are best for you.

Merry Christmas! Best wishes and many blessings to all!

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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mbaelaporte's picture
Replies 4
Last reply 12/30/2011 - 9:36am

Hello All  : I previously reported on my initial splendid results with Zelboraf therapy.  I am now experiencing a recurrence of tumor growth in my seventh month on this drug and hoping to hear about what the next steps in my path might be.  I visit w / my oncologist later this week and am scheduled for neck, chest & abdomen scans.  Was heartened to read a post by PhoenixJ and the positive results she is receiving in her treatment with Ipi - is there a chance Phoenix you might reveal  the calculus as to why you were taking Zelboraf for two months then switched to Ipi?

Also I'm thinking my oncologist spoke before about my not being able to segue right into a Zelboraf / MEK trial because of my usage of Zelboraf?

And remembering that maybe my facility Seattle Cancer Care Alliance does not have a relationship w/ that drug at this time?

and that my wife looked it up & UCLA does??

Anyway I'm trying to amp up for this visit and so appreciate all the information shared on this site.  Please come forward with any thoughts or experiences you have on this subject

Cheers and all the best to you,  john

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MikeWI's picture
Replies 4
Last reply 12/28/2011 - 9:32pm

I have been reading about this Trial and have some question.  It seems this would offer lots of promise to us with melanoma.

My questions are:

1.  what is the delivery method of Anit-pd1?  Is it done IV, or is this a pill, or a cream.

2.  How does it know the difference between Healthly skin and the Tumor?

 

MikeWI

stage 2c

Search and Destroy

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Neeq79's picture
Replies 4
Last reply 12/21/2011 - 9:47pm
Replies by: CLPrice31, Camp Host, Neeq79

Hello Everyone,

I hope you don't mind me posting here.  I have not been diagnosed with Melanoma, instead I am waiting to receive initial results. 

I have dark blond hair, blue eyes, and many freckles.  I was unfortunately one of those teens and early 20 somethings who thought looking better meant having a tan.  I never went to a tanning bed but spent many days out in the sun with little to no sunscreen.  I am now 32 and definitely have put those days behind me, what was I thinking?  I knew you could get skin cancer from sun exposure so I have always been good at checking my face, arms, and torso.  I knew I had freckles and moles on my back, but, my back was rarely sunburned (I always hated a burnt back so it was not often exposed). 

I had a physical last month and asked about my back, my doctor sent me to a dermatologist.  I went  and unfortunately, I had three irregular moles that were removed by punch biopsy last Thursday.  I asked her if they came back positive what it would be, and she stated Melanoma.  As I sit her with stitches and waiting for results, I wanted to do research on what exactly Melanoma is.

I am so glad I found this website and I have thoroughly enjoyed reading your stories. Thank you so much for posting something so personal.  I feel like my eyes have finally been opened to what I took, in a sense, casually.  I am praying nothing comes back positive for Melanoma, however, I know I will need yearly checkups which I will always be on top of. I also want to get the word out to everyone that Melanoma is something you may not realize you have until it is too late.  It goes way beyond sun exposure, as I'm an example, the parts with very little sun exposure are the places with the irregular moles I need to monitor.  I wish our culture was one of health, true health, not the thinking that a tan appearance equals health.  I wish Melanoma awareness and education was as easy to find as a tanning salon is. 

I am very nervous about my results, but no matter what they are, my attitude and outlook have definitely changed.  We're blessed with one body and one life, it's up to us to take care of it the best we can and to not take it for granted.  

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TomJ6299's picture
Replies 9
Last reply 12/31/2011 - 3:26pm

I was at work friday and I noticed my vision was very limited in my right eye. I went to an ER and an Optimologist was called in, he did what seemed like an ultra sound on my eye and found a tumor, he then informed me that it was Cancer. Since then it seems like a nightmare. Anyway my name is Tom, Im a 49 year old single widowed father of a great 15 year old boy who needs me. We live in louisiana and love LSU and the Saints. Im also a recovered alcoholic and drug addict , Ive been clean and sober since 2003. Any feedback will be greatly appreciated

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/19/2011 - 5:41pm
Replies by: audgator, Anonymous, Angela C

Quick Hx as I can't seem to enter a profile: Found a lump on my neck 6/09; Dx as melanoma 8/09; primary lesion never found; surgical removal of 20+ lymph nodes, 2 of which showed cancer; highly focused radiation 1/10; 1 yr. of interferon; all scans clear until 8/11 which showed spots in lungs & liver; 2 biopsis inconclusive as lesions are too small to get adequate tissue samples.  I started ipi a couple weeks ago & have my 2nd this Thursday. So far I have had no side effects. If  I were in a trial (I'm not) I would suspect I'm on a placebo.  Blood work has been OK except the white count is a little high.  I've always enjoyed wine with dinner but I went without for the year on interferon. My oncologist has not banned wine while on ipi but only made a vague suggestion that a holiday glass would be alright.  I am wondering what others have been told about alcohol & Yervoy?

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j.m.l.'s picture
Replies 5
Last reply 12/21/2011 - 10:12am

I had 4 mel tumors removed. That was the easy part. Latest is tumor laying on arm artery. Dr. says inoperable. no wide margin, etc.

Tried IPI-side effects but no shrinkage, just growth. On Decarbazine but I know this drug is a very low responder. Will try other chemos but this takes months of try and error.DOES  ANYONE KNOW FROM A LAYMAN'S TERMS WHAT THE DANGER ARE INVOLVED WITH SURGERY TO REMOVE THIS TUMOR LAYING ON AN ARTERY. OF COURSE I WILL CONFIRM W. DRS. BUT I WOULD LIKE TO KNOW FROM ANY IDEAS OUR THERE.

NEED ADVICE, jml

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Anonymous's picture
Anonymous
Replies 0

How are you both doing?? Happy Holidays to you & your family.

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LynnLuc's picture
Replies 7
Last reply 12/19/2011 - 10:41pm

Had my scans and anti pd 1 on Wednesday...it was week 60 of my clinical trial....Dr Weber says I am doing great! NED!!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Most of you probably won't remember me but when I saw your names the warmth came flooding back. Charlie s, janner, barbie girl, bonnilea to name just a few. I'm so glad your still kicking mels ass. Just because I rarely pop by now, your all still very much in my thoughts. I'm just trying to get by without thinking of the beast too often, easier said than done sometimes as you all know. Well i just wanted you to know that you all remain in my heart in a very special place for being so helpful and encouraging when I first sought out mpip almost 6years ago. Thanks guys your all amazing. I wish you all a very merry Christmas and may 2012 be a kickmelsass year for all of us .

Laneymcg x

Sending love across the pond x x

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Most of you probably won't remember me but when I saw your names the warmth came flooding back. Charlie s, janner, barbie girl, bonnilea to name just a few. I'm so glad your still kicking mels ass. Just because I rarely pop by now, your all still very much in my thoughts. I'm just trying to get by without thinking of the beast too often, easier said than done sometimes as you all know. Well i just wanted you to know that you all remain in my heart in a very special place for being so helpful and encouraging when I first sought out mpip almost 6years ago. Thanks guys your all amazing. I wish you all a very merry Christmas and may 2012 be a kickmelsass year for all of us .

Laneymcg x

Sending love across the pond x x

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jmmm's picture
Replies 2
Last reply 12/17/2011 - 11:52pm
Replies by: kylez, deardad

My husband had a craniotomy 2 1/2 weeks ago and (at least to me) it seems like he's dropped into a deep depression. He is on a heavy dose of Keppra (anti-seizure drug) and Zelboraf, so I'm not sure if it's because of all the meds or not. He's sleeping most of the day, tossing and turning all night and when he's awake, he's just sitting on the couch watching TV or reading with a glassy look in his eyes. He doesn't want to leave the house, but does get over stimulated with the sights and sounds whenever we go out. I'm really struggling with all of this...we have 3 children who need their Dad. He's supposed to do gamma knife on Thursday and I know he's worried about that. He's been stage 4 since January, but has never been down like this. Has anyone else been through this? Any suggestions (other than anti depressants..he refuses to even consider it)?

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Frannie55's picture
Replies 1
Last reply 12/31/2011 - 12:33pm
Replies by: Lauri England

Finally we west Michiganders have our own melanoma clinic. It is affiliated with Spectrum Health.  The website is:

http://www.spectrumhealth.org

Our Van Andel institute is now researching the BRAF wild type gene. Here is a link to their page:

http://www.vai.org/News/News/2011/12_14_SU2C-Melanoma.aspx 

I have been NED since April 2010 and am not due for my next PET scan until March. But I think I will go in to check it out anyway.

Keep fighting the battle!

Believe that you can or believe that you can't. Either way, you are right. - H. Ford

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