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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Anonymous's picture
Anonymous
Replies 14
Last reply 2/4/2013 - 10:35am
Replies by: Josh, domingoss, Anonymous, Janner

Hi there, this is my first post but need some help. Two years ago I had wide excision of my left upper arm for 2 melanoma sites (in situ). My arm has been hurting and burning on occasion, but has increased lately. I was wondering if anyone else has had pain so far out from surgery? I should also mention, I've already had a new mole appear right on the incision taken off which was negative. Thanks for listening

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Lauri England's picture
Replies 5
Last reply 2/4/2013 - 9:21pm

I had another PET scan done on January 25, 2013 and a spot on my left rib cage 3 rib down from top lit up on the scan.  It was not there on the previous scan from April 2012.  They asked if I had some kind of rib injury since last April and I have not at all.  The doctor said it could be a bone fracture and he wants to do check xrays.  He said if it is a fracture it will show up on the xray, but if it is something else he is talking about a bone biopsy.  I am scared to death. I know I did not hurt my ribs by any accident or injury so I know that is not what it is. Any advice would be greatly appreciated.  I have not visited in a while as things have been going pretty good.  I had my 1 year anniversary from being off interferon September 2012 but I also know that is not a cure. I am just so very scarred....

Don't sweat the small stuff. There are bigger fish to fry!

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I had another PET scan done on January 25, 2013 and a spot on my left rib cage 3 rib down from top lit up on the scan.  It was not there on the previous scan from April 2012.  They asked if I had some kind of rib injury since last April and I have not at all.  The doctor said it could be a bone fracture and he wants to do check xrays.  He said if it is a fracture it will show up on the xray, but if it is something else he is talking about a bone biopsy.  I am scared to death. I know I did not hurt my ribs by any accident or injury so I know that is not what it is. Any advice would be greatly appreciated.  I have not visited in a while as things have been going pretty good.  I had my 1 year anniversary from being off interferon September 2012 but I also know that is not a cure. I am just so very scarred....

Don't sweat the small stuff. There are bigger fish to fry!

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Colleen66's picture
Replies 6
Last reply 2/4/2013 - 6:34pm
Replies by: POW, Colleen66, Gene_S, NYKaren

 

SUNSCREEN 
 
If I could offer you only one tip for the future,

sunscreen would be it. 
The long term benefits of sunscreen have been proved by scientists, 
whereas the rest of my advice has no basis more reliable than my own meandering experience 
I will dispense this advice now.

Enjoy the power and beauty of your youth, oh nevermind, 
you will not understand the power and beauty of your youth until they've faded. 
But trust me, in 20 years you’ll look back at photos of yourself 
and recall in a way you can’t grasp now, how much possibility lay before you 
and how fabulous you really looked, 
you are not as fat as you imagine.

Don’t worry about the future, or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum. 
The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4pm on some idle Tuesday.

Do one thing everyday that scares you

Sing

Don’t be reckless with other people’s hearts, 
don’t put up with people who are reckless with yours.

Floss

Don’t waste your time on jealousy, sometimes you’re ahead, sometimes you’re behind, 
the race is long, and in the end, it’s only with yourself.

Remember the compliments you receive, forget the insults, 
if you succeed in doing this, tell me how.

Keep your old love letters, throw away your old bank statements.

Stretch

Don’t feel guilty if you don’t know what you want to do with your life, 
the most interesting people I know didn’t know at 22 
what they wanted to do with their lives, 
some of the most interesting 40 year olds I know still don’t.

Get plenty of calcium.

Be kind to your knees, you’ll miss them when they’re gone.

Maybe you’ll marry, maybe you won’t, maybe you’ll have children, maybe you won’t, 
Maybe you’ll divorce at 40, 
Maybe you’ll dance the funky chicken on your 75th wedding anniversary 
What ever you do, don’t congratulate yourself too much or berate yourself either 
Your choices are half chance, so are everybody else’s. 
Enjoy your body, use it every way you can, don’t be afraid of it, 
or what other people think of it, it’s the greatest instrument you’ll ever own

Dance, even if you have nowhere to do it but in your own living room.

Read the directions, even if you don’t follow them.

Do not read beauty magazines, they will only make you feel ugly.

Get to know your parents, you never know when they’ll be gone for good.

Be nice to your siblings, they are the best link to your past 
and the people most likely to stick with you in the future.

Understand that friends come and go, but for the precious few you should hold on. 
Work hard to bridge the gaps in geography and lifestyle because the older you get, 
the more you need the people you knew when you were young.

Live in New York City once, but leave before it makes you hard, 
Live in Northern California once, but leave before it makes you soft.

Travel.

Accept certain inalienable truths, prices will rise, politicians will philander, 
you too will get old, and when you do you’ll fantasize that when you were young 
prices were reasonable, politicians were noble and children respected their elders.

Respect your elders.

Don’t expect anyone else to support you. Maybe you have a trust fund, 
Maybe you have a wealthy spouse; but you never know when either one might run out.

Don’t mess too much with your hair, or by the time you're 40, it will look 85.

Be careful whose advice you buy, but, be patient with those who supply it. 
Advice is a form of nostalgia, dispensing it is a way of fishing the past from the disposal, wiping it off, 
painting over the ugly parts and recycling it for more than it’s worth.

But trust me on the sunscreen

Baz Luhrmann 

Live!

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bikerwife's picture
Replies 8
Last reply 2/3/2013 - 10:17pm

Lynn will be having his third gamma knife Monday. I have anxiety im scared. Please pray for us.

Im not going alone this time both our kids and my daughter in law are going. This scars me also they have never seen this head peice. Lynn sister is going so she can help us.

i know im not alone I have my MPIP family that share the same feelings and emotions.

Love and Hugs to you all. 

Belva

What God leads u to he will. Lead you through

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/3/2013 - 10:30am
Replies by: Janner, Anonymous, becky15, POW

I was diagnosed several months ago at stage 1. The primary was on my upper right shoulder blade and only .25mm. I had a wide incision done and nothing else. About two weeks ago I woke up with an ear infection. I went to the doctor and they put me on antibiotics. I finished those early last week but the lymph node right in front if my ear lobe is still swollen. Should I just see my regular doctor or should I call my oncologist? It has now been swollen for almost two weeks.

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Annabeth's picture
Replies 3
Last reply 2/2/2013 - 10:05am
Replies by: Phil S, jmmm

My dad has just been diagnosed with Stage IV MM.  He had a mole on his chest removed last year.  They removed a lymph node from his armpit a couple of weeks ago that had mm.  His PET scan results show hot spots on his liver and bones.  I'm trying to not read too much online because everything sounds so doom and gloom.  My biggest concern is telling my 10yr old daughter that Grandpa has cancer.  Since she was born they have been inseparable.  They are bffs.  She's a bright girl and can take the truth but how do I tell her?  I don't want to scare her I just want her to understand what is happening to Grandpa.

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Colleen66's picture
Replies 9
Last reply 2/5/2013 - 6:23am
Replies by: DeniseK, Colleen66, Anonymous, Swanee, casagrayson

October 2012 had WLE and slnb, node positive.  November 2012 had surface nodes removed from groin.  December 2012 started Interferon thru clinical trial. Had to stop infusions in January because of severe side effects, Doc won't even let me do the shots cuz my body can't handle it.  Last scan in December showed 4mm lung spot, have had chronic cough for a month, will rescan in March I think.   Just had two more biopsies and very early melanoma, will re excise,  no worries.  

Thing is, I feel better than I have for the past year.  My mood has been incredible, I'm exercising regularly at ymca, appetite is great.  I'm not even worried about future treatments, surgeries, have even accepted death.  

I think I am trying to fool myself.  Aside from feeling great I have been organizing everything.  Cupboards, closets, paperwork, every thing that can be cleaned or organized I am doing.  I guess I'm preparing.  I have never really gotten depressed, had crying spells or emotional outbursts since diagnosis.  I'm just doing what needs to be done.  

Am I not accepting things? Am I falsely happy and is that a bad thing?

I'm wondering if any of you are or have experienced this.  Any input is greatly appreciated. 

Colleen 3B

Live!

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2004livestrong's picture
Replies 2
Last reply 3/23/2013 - 3:47pm
Replies by: bluevit, Janner

I have Acral subungual melanoma under the toenail in 2004. After surgery I was NED until last year when it appeared in two lymph nodes. I now have inoperable mets in my lungs. I am not BRAF mutant and now being tested for the C-KIT mutation. What is the more effective... Ipilimumab or imatinib? Thanks. 

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I have Acral subungual melanoma under the toenail in 2004. After surgery I was NED until last year when it appeared in two lymph nodes. I now have inoperable mets in my lungs. I am not BRAF mutant and now being tested for the C-KIT mutation. What is the more effective... Ipilimumab or imatinib? Thanks. 

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I have Acral subungual melanoma under the toenail in 2004. After surgery I was NED until last year when it appeared in two lymph nodes. I now have inoperable mets in my lungs. I am not BRAF mutant and now being tested for the C-KIT mutation. What is the more effective... Ipilimumab or imatinib? Thanks. 

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qtkitycat's picture
Replies 12
Last reply 2/8/2013 - 5:04pm

My fiance was just diagnosed with stage IV melanoma.  He orginally had a large mole on his back removed 6/12 that was malignant.  They did a cential node biopsy for 2 nodes at that time also.  Everything came back cleared, no evidence of any remaining cancer.

Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle.  We are both devastated with this news.  The outlook is grim.  They are waiting for the Braf Mutation test to come back before they proceed with any treatment.  Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.

There's got to be a better outcome.  Any advice would be greatly appreciated.

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qtkitycat's picture
Replies 3
Last reply 2/8/2013 - 5:30pm

My fiance was just diagnosed with stage IV melanoma.  He orginally had a large mole on his back removed 6/12 that was malignant.  They did a cential node biopsy for 2 nodes at that time also.  Everything came back cleared, no evidence of any remaining cancer.

Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle.  We are both devastated with this news.  The outlook is grim.  They are waiting for the Braf Mutation test to come back before they proceed with any treatment.  Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.

There's got to be a better outcome.  Any advice would be greatly appreciated.

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Anonymous's picture
Anonymous
Replies 0

My fiance was just diagnosed with stage IV melanoma.  He orginally had a large mole on his back removed 6/12 that was malignant.  They did a cential node biopsy for 2 nodes at that time also.  Everything came back cleared, no evidence of any remaining cancer.

Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle.  We are both devastated with this news.  The outlook is grim.  They are waiting for the Braf Mutation test to come back before they proceed with any treatment.  Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.

There's got to be a better outcome.  Any advice would be greatly appreciated.

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Anonymous's picture
Anonymous
Replies 0

My fiance was just diagnosed with stage IV melanoma.  He orginally had a large mole on his back removed 6/12 that was malignant.  They did a cential node biopsy for 2 nodes at that time also.  Everything came back cleared, no evidence of any remaining cancer.

Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle.  We are both devastated with this news.  The outlook is grim.  They are waiting for the Braf Mutation test to come back before they proceed with any treatment.  Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.

There's got to be a better outcome.  Any advice would be greatly appreciated.

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