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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awillett1991's picture
Replies 3
Last reply 2/1/2013 - 11:04am

Was just wondering how you, Zel, and prednisone are all getting along. I tried to taper from 7.5 mg to 5 mg but it didn't go well at all, so back to 7.5 mg now. I'm so messed up still from Ipi I guess. Anyway, knew you were hurting and was just thinking of you. Hope you are feeling better.

Amy

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/31/2013 - 10:23pm
Replies by: POW, MeNDave, Anonymous

I know lots of folks didn't know they had brain mets until a scan showed them.  

For other folks - just curious as to what type of symptoms they had before they showed up on a scan.  

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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sjl's picture
Replies 2
Last reply 2/1/2013 - 6:01pm
Replies by: Josh, Ali

My husband had his first round of Yervoy on Tuesday after carbo/taxol stopped working.  He felt fine yesterday and worked a long day.  Today, he was totally wiped out with fatigue just as he was on the second day after he had the chemo.  But, a tumor that popped up fast last week (to about 1/2" diameter) on his neck feels different today.  It feels softer and I really think it is a bit smaller.  Has anyone else had this fast of a response to yervoy?  I'm sure hoping the yervoy is kicking in already!

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Anonymous's picture
Replies 15
Last reply 12/4/2015 - 10:22am
Replies by: jenny22, ruby, Anonymous, TAC, qtkitycat, POW

Long-Term Follow-Up and Survival of Patients Following a Recurrence of Melanoma After a Negative Sentinel Lymph Node Biopsy Result

 

JAMA Surgery. 2013 Jan 16;[Epub Ahead of Print], EL Jones, TS Jones, NW Pearlman, et al

 

TAKE-HOME MESSAGE

Retrospective review of 520 melanoma patients with a negative sentinel lymph node biopsy showed an overall recurrence rate of 16%, with median follow-up of 61 months. For recurrences in the sampled nodal basin, the false-negative rate was 4%. Factors that significantly predicted recurrence were increasing age, increasing Breslow thickness, the presence of ulceration, and lesions in the head and neck.

 

SUMMARY
OncologySTAT Editorial Team

The status of the sentinel lymph node (SLN) is the strongest predictor of recurrence in melanoma. However, false-negative SLN biopsy (SLNB) results are possible. Because melanoma recurrences are often delayed, long follow-up is necessary to clearly define the patterns of recurrence after a negative SLNB and the factors that predict recurrence risk in these patients.

Jones et al reviewed the charts of 515 melanoma patients who had a negative SLNB (performed by one of two investigators at the University of Colorado Hospital, Aurora) between 1996 and 2008. There were 5 patients with two separate lesions with separate SLNBs and so were counted twice for a total of 520 patients. Median follow-up was 61 months (range, 0–154 months).

Of the 520 patients with a negative SLNB, 83 (16%) had a recurrence a median of 23 months (range, 2–106) after diagnosis. Only 21 patients had a recurrence in the sampled nodal basin for an in-basin false-negative rate of 4%.

In univariate analysis, significant predictive factors for recurrence after a negative SLNB were male sex, older age at diagnosis, increasing Breslow thickness of the primary lesion, the presence of ulceration, and lesions located in the head and neck region. (Clark level, mitoses, lymphovascular invasion, and regression did not predict recurrence.) In multivariate analysis, all of the predictive factors remained significant except male sex.

Of the 83 patients with a recurrence after a negative SLNB result, 40 (48.2%) died. Median survival after recurrence was 15.5 months (range, 1–73 months). The 5-year overall survival (OS) probability was significantly lower in the patients who experienced a recurrence compared with those who did not (68% vs 98%). For all patients with a negative SLNB, OS was 91%.

When patients with unknown location of recurrence were excluded, the initial location of recurrence (local, in-transit, regional, or distant) did not significantly affect OS. This finding is contrary to the supposition that local or in-transit recurrences may be caught earlier and resected, leading to improved survival.

Among the 26 patients with a distant recurrence, 13 died, and patients with gastrointestinal, liver, and/or multiple metastases tended to have a lower survival probability.

The long median time to recurrence (23 months) in this study highlights the importance of long-term follow-up for these patients. The optimal time for a final postoperative visit has yet to be determined, but in the current study, a follow-up time of just 5 years would have missed 10.8% of recurrences.

Access the article »

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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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