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 requested my Vit D levels checked here at St Louis yest. Got a call from the nurse that it is pretty low, at 16, when she said normal should be 30.Dr Linette does not routinely give rx for this issue and recommended I contact my fam Dr for a high dose supplement. I have seen posts on here concerning vit D levels ( which is why I asked to have it checked to begin with). To be honest, I feel the best I have in a year, so I am not feeling symptoms that I can tell. Nevertheless, it does seem like an important issue. I always like to be informed as best as possible beforehand, so wanting to research it before I call Dr.

Thanks!

Tina

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Hi, i just found this site today, as stated above, i have stage 4 Melanoma that has spread to my liver and upper GI track. The tumor on my GI track is causing blood to leak into the GI track, So yesterday i had the first dose of Yervoy and a blood transfusion . I see a lot of people on here have lots of bad side effects from the Yervoy, but what about the positive results from the Yervoy, Has anyone had good results ?????? Thanks, Jerre

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Managing Melanoma in a Quickly Changing Landscape: Understanding the Latest Treatment Options

February 11, 2013 - 11 a.m. - 12 p.m. EST

REGISTER TODAY for this free educational webinar for people with melanoma, caregivers and medical professionals

After receiving a melanoma diagnosis, what's the first step in getting the best treatment? Do you know all your treatment options?

Melanoma researchers have made great strides in treating melanoma in recent years and many promising drugs are just around the corner. These advances, while exciting, highlight the importance of staying on top of the recent developments.

The MRF is proud to host this live webinar to discuss the latest in treatment options, what you should know about accessing care, and why clinical trials are especially relevant to people with melanoma. We urge you to join us. People who are educated and informed about their care options tend to live longer and better lives.

This free webinar will be led by top melanoma experts including:

Lynn M. Schuchter, M.D., Chief, Hematology Oncology, University of Pennsylvania Department of Medicine

Michael B. Atkins, M.D., Deputy Director, Georgetown-Lombardi Comprehensive Cancer Center

Anna C. Pavlick, D.O., Co-Director, New York University Langone Medical Center Melanoma Program

Join us at 11 a.m. - 12 p.m. EST, February 11, 2013 

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Carole K's picture
Replies 5
Last reply 2/8/2013 - 11:31am
Replies by: MissyA, Ali, Fen, DeniseK, Janner

Hi Everyone,

For all intents I am concisdered to be an OLD TIMER on the board eventough I rarely post anymore.  I am still NED after a brain met for which I had surgery 12 years ago today at NYU Medical Center in NYC.  I am still amazed and every day I wake up and say IT'S A BEAUTIFUL DAY, I OPENED MY EYES TODAY. NO matter the storm, the rain in my life or with the weather I still find many blessings.

We all know the diagnosis of Brain Met is considered a death sentemce.  I was petrified until my oncoldogst said.. Carole, noone can tell you where the statistics come from , nor nos they wre arrived at or how old they are. YOU ARE AN INDIVIDUAL AND YOU ARE DIFGFERENT FROM EVERYONE ELSE.  Those words stuc with me and still do to this day, 

I have been blessed to see both of my daughters married and three incredible grandchildren brought into the world and a fourth one on the way and a hopefully a fith one by the end of the year. What more could I ask for.  I spend so much time with my grandchidlren who make me smile and at times make me cry wiht a big kiss or a cry as I leave and say goodbye.  Wow.. I wouldn't  trade it for anything in the world.  No amoung of money could buy this happiness. 

To each and everyone of you on this journey, take a deep breath, try to find the gifts, there are many and yet at times I know how difficult it is to find them. the past 12 years have not been easy in many ways,.  I have lost far too  many loved ones, far too many Melanoma Patients I have connected with, a huge financial loss and at the same time I have witnessed two daughers being married, three grandhcidren being born, I have built a new house, I have traveled far and wide to meet so many of you , WE have shared laughter, tears and joy and I am so eternally gratefull to each and everyone who havr crossed my ;path.  You have brought me smiles, joys and laughtert at the times I have needed it most. You have brought me sanity in those times of insanity. You have brought me hope in times of Fear,Laughter in times of sorrw and most of all Love and Light I will teasure forever.

ONE NIGHT AT A PARTY MY DAUGHTERS HAD THE SONG   YOU ARE SIMPLY THE BEST, BETTER THAN ALL THE REST playerd for me. I  dediacate this song to all of you.  HANG TOUGH.. NEVER EVER EVER GIVE UP HOPE.  and To each and everyone of you I dedicate my song to my daughters.  Celine Dion  BECAUSE YOU LOVED ME.  Many years ago I also dedicated that song to two people I met on MPIP who are a huge part of my life to this day... Chip and Bonnie whose strngth and courage helped me through the most difficult time of my life. Despite the fact they were in the mdst of a very diffcult time of their own they were ther then and continue to be with me today.. 12 years later. Thang you All.

Love and Ligth

Carole K

IF I CAN BE OF ANY HELP EM AIL ME ATmm MMPatientSupport@aol.com  

LOVE AND LIGHT

CAROLE

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Hi Everyone,

For all intents I am concisdered to be an OLD TIMER on the board eventough I rarely post anymore.  I am still NED after a brain met for which I had surgery 12 years ago today at NYU Medical Center in NYC.  I am still amazed and every day I wake up and say IT'S A BEAUTIFUL DAY, I OPENED MY EYES TODAY. NO matter the storm, the rain in my life or with the weather I still find many blessings.

We all know the diagnosis of Brain Met is considered a death sentemce.  I was petrified until my oncoldogst said.. Carole, noone can tell you where the statistics come from , nor nos they wre arrived at or how old they are. YOU ARE AN INDIVIDUAL AND YOU ARE DIFGFERENT FROM EVERYONE ELSE.  Those words stuc with me and still do to this day, 

I have been blessed to see both of my daughters married and three incredible grandchildren brought into the world and a fourth one on the way and a hopefully a fith one by the end of the year. What more could I ask for.  I spend so much time with my grandchidlren who make me smile and at times make me cry wiht a big kiss or a cry as I leave and say goodbye.  Wow.. I wouldn't  trade it for anything in the world.  No amoung of money could buy this happiness. 

To each and everyone of you on this journey, take a deep breath, try to find the gifts, there are many and yet at times I know how difficult it is to find them. the past 12 years have not been easy in many ways,.  I have lost far too  many loved ones, far too many Melanoma Patients I have connected with, a huge financial loss and at the same time I have witnessed two daughers being married, three grandhcidren being born, I have built a new house, I have traveled far and wide to meet so many of you , WE have shared laughter, tears and joy and I am so eternally gratefull to each and everyone who havr crossed my ;path.  You have brought me smiles, joys and laughtert at the times I have needed it most. You have brought me sanity in those times of insanity. You have brought me hope in times of Fear,Laughter in times of sorrw and most of all Love and Light I will teasure forever.

ONE NIGHT AT A PARTY MY DAUGHTERS HAD THE SONG   YOU ARE SIMPLY THE BEST, BETTER THAN ALL THE REST playerd for me. I  dediacate this song to all of you.  HANG TOUGH.. NEVER EVER EVER GIVE UP HOPE.  and To each and everyone of you I dedicate my song to my daughters.  Celine Dion  BECAUSE YOU LOVED ME.  Many years ago I also dedicated that song to two people I met on MPIP who are a huge part of my life to this day... Chip and Bonnie whose strngth and courage helped me through the most difficult time of my life. Despite the fact they were in the mdst of a very diffcult time of their own they were ther then and continue to be with me today.. 12 years later. Thang you All.

Love and Ligth

Carole K

IF I CAN BE OF ANY HELP EM AIL ME ATmm MMPatientSupport@aol.com  

LOVE AND LIGHT

CAROLE

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Carole K's picture
Replies 4
Last reply 1/31/2013 - 9:37pm

Hi Everyone,

For all intents I am concisdered to be an OLD TIMER on the board eventough I rarely post anymore.  I am still NED after a brain met for which I had surgery 12 years ago today at NYU Medical Center in NYC.  I am still amazed and every day I wake up and say IT'S A BEAUTIFUL DAY, I OPENED MY EYES TODAY. NO matter the storm, the rain in my life or with the weather I still find many blessings.

We all know the diagnosis of Brain Met is considered a death sentemce.  I was petrified until my oncoldogst said.. Carole, noone can tell you where the statistics come from , nor nos they wre arrived at or how old they are. YOU ARE AN INDIVIDUAL AND YOU ARE DIFGFERENT FROM EVERYONE ELSE.  Those words stuc with me and still do to this day, 

I have been blessed to see both of my daughters married and three incredible grandchildren brought into the world and a fourth one on the way and a hopefully a fith one by the end of the year. What more could I ask for.  I spend so much time with my grandchidlren who make me smile and at times make me cry wiht a big kiss or a cry as I leave and say goodbye.  Wow.. I wouldn't  trade it for anything in the world.  No amoung of money could buy this happiness. 

To each and everyone of you on this journey, take a deep breath, try to find the gifts, there are many and yet at times I know how difficult it is to find them. the past 12 years have not been easy in many ways,.  I have lost far too  many loved ones, far too many Melanoma Patients I have connected with, a huge financial loss and at the same time I have witnessed two daughers being married, three grandhcidren being born, I have built a new house, I have traveled far and wide to meet so many of you , WE have shared laughter, tears and joy and I am so eternally gratefull to each and everyone who havr crossed my ;path.  You have brought me smiles, joys and laughtert at the times I have needed it most. You have brought me sanity in those times of insanity. You have brought me hope in times of Fear,Laughter in times of sorrw and most of all Love and Light I will teasure forever.

ONE NIGHT AT A PARTY MY DAUGHTERS HAD THE SONG   YOU ARE SIMPLY THE BEST, BETTER THAN ALL THE REST playerd for me. I  dediacate this song to all of you.  HANG TOUGH.. NEVER EVER EVER GIVE UP HOPE.  and To each and everyone of you I dedicate my song to my daughters.  Celine Dion  BECAUSE YOU LOVED ME.  Many years ago I also dedicated that song to two people I met on MPIP who are a huge part of my life to this day... Chip and Bonnie whose strngth and courage helped me through the most difficult time of my life. Despite the fact they were in the mdst of a very diffcult time of their own they were ther then and continue to be with me today.. 12 years later. Thang you All.

Love and Ligth

Carole K

IF I CAN BE OF ANY HELP EM AIL ME ATmm MMPatientSupport@aol.com  

LOVE AND LIGHT

CAROLE

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Tina D's picture
Replies 6
Last reply 2/5/2013 - 7:40am

We are in St Louis, and I completd 3rd ipi dose today. So far I am doing very well and no adverse effects. Have had night sweats, but nothing more. Grateful for feeling well. I know many are in midst of hard days at the moment ...  I am constantly aware of this, on both my good days and those that are more difficult. 

Tina

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/4/2013 - 11:38pm
Replies by: DeniseK

Hi Denise,

Thank you so much for posting Lazarex info. I live in CA. and also in a clinical trial. I called the lady at Lazarex & I have to complete a form so that a decision will be made to help me with my costs.

Did you have to complete a form? How long did it take for a decision to be made to help you or not help you.  What did Lazarex agree to help you with?/

The lady was vey busy and  did not tell me much over the phone.

Denise, thank you so much for taking the time to answer my questions.

Betty

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dolphin5's picture
Replies 4
Last reply 1/30/2013 - 7:02pm
Replies by: kylez, Linny, POW, Janner

My wife was found to have four tumors all positive for melanoma.  Three have been removed with clear margins.  One in the breast, lung and buttocks.  One was left in her neck with the theory of wait and watch, which she does not like.  The primary was never found.  All have the marker of HMB45, S100 and Melan-A.  This is our question.  What do these markers mean and do they determine future treatment.  Finally does it sound reasonable to wait and watch.  

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POW's picture
Replies 5
Last reply 2/7/2013 - 9:30am
Replies by: POW, Tina D, NYKaren, washoegal, Anonymous

 

The people on this forum are pretty open about most emotions. We talk about our fear, anxiety, frustration, elation, and stress. But I never hear anybody talk about depression. I, personally, didn't talk about it because with so much to do and so much to think about, I wasn't depressed. Or so I thought!

I just posted about depression on the Off-Topic forum. I suspect that we all-- patients and caregivers-- would be wise to recognize and deal with that emotion. It's effects can be very corrosive.

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/30/2013 - 12:51pm
Replies by: Janner

between melanoma in-situ and invasive radial growth phase melanoma?  what's the difference prognostically?  risk-wise?  what would an insurance company look at in terms of difference? 

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sharmon's picture
Replies 5
Last reply 1/30/2013 - 6:30pm
Replies by: sharmon, Owl, Anonymous, awillett1991, melissa ann

I will need to have all the the available now.  the trial is not working and he is in terrible pain in the hospital now.  he was to be scanned on the 6 of feb but they are moving it up to tomorrow .  then they are talking about radiation .  I will be asking questions and trying to find a way to  get more treatment.  he doesn't want to quit.  all of his pain can be treated with a inserted pain pumb under the skin and that is scheduled.  he was on the merck mek trial and did not fail the trial but moved to this trial when it became available.  Jimmy B I need your input as well as others.  I still have mek on hand.  he is braf negative and was tested twice but not by the new test.  this was years ago.  HELP.  Ask me questions, give me hope. 

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AllyNTAus's picture
Replies 6
Last reply 2/15/2013 - 7:41am

Hi everyone,

I've been going pretty well on the GSK BRAF inhibitor since I started on it 1 May 2012, all existing enlarged lymph nodes shrunk dramatically and stayed that way, lungs cleared up, no new things cropping up until now. My CT in Nov 12 showed a 7mm focal lesion in the fundus of the gallbladder. By my next CT on 9 Jan 13, it had increased to 15mm. I had an ultrasound today, and while I don't have the report, it is quite obvious to me from looking at the film that the lesion is now quite large, and looks a bit like a tree with several branches coming off it.

I have no symptoms at all, feel otherwise very well, and my melanoma oncologist has remained happy with my response to the BRAF inhibitor.

I have an appointment to see my local oncologist in the morning, but I am expecting bad news. I have read some articles that indicate metastisis to the gallbladder is fairly common, and if contained there, can respond reasonably well to surgical resection. I am happy to get rid of my gallbladder if necessary!

So I was just wondering whether anyone else had experience with a met to the gallbladder.

Hoping all of you are keeping well,

Allison

A bad day's fishing beats a good day's work everytime

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Replies by: Anonymous

We have done radiation on the tumor on his back, radio-surgery to the tumor in his brain, been waiting to hear back for 2 weeks on the B-raf mutation and possible going to do IL 2 in a week. Anyone been on this road and have any advice??? So far the side effects are, sore esphogus and difficult swallowing and burping and since there are liver spots, really uncomfortable around the liver. He also can't eat a lot at one time, since this makes the liver uncomfortable feeling worse. Advice or personal stories of what has worked and what has not worked would be most helpful. Thanks.

one day at a time...

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/30/2013 - 1:08pm
Replies by: Anonymous, Janner

I thought melanoma on the skin that regresses would be a good thing.  It would be going away.

But then someone posted that if a place on skin regressed, it might end up later that a tumor showed up with an unknown primary.  That didn't sound so good.  You might lose a signpost that something was wrong.

What to make of this?  Puzzling.

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