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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jag's picture
Replies 12
Last reply 9/1/2010 - 3:51pm

Next step, escape from MSKCC.

Insert Generic Inspirational Motto Here

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Angela C's picture
Replies 4
Last reply 9/1/2010 - 9:37pm

Hi everyone.

I haven't posted on here in quite some time. No news is good news, right? =)

My primary melanoma was on my forehead. I have had three wide excision surgeries on my forehead since 2007 because it has recurred twice in the same area. My last surgery was September of 2009. I have had a couple of bumps on the edge of the scar line for as long as I can remember since the last surgery. Over the last couple of months, I noticed that every day they seemed different in size. Some days they seemed more swollen than others and they have also had some slight coloration under the skin. They sort of looked blue. The surgeon that performed the surgery has seen them several times but not been worried about them. My oncologist does not like that they seem to be changing, so he orderd a biopsy.

The biopsy was performed today at my plastic surgeon's office. He said that the tissue was grissly, which typically means scar tissue. He said it was a little darker in color though. He said it was a little bluish grey. With all of my biopsies in the past, grey has been melanoma. Pink tissue has been benign. Have any of you had an experience where scar tissue looked colored under the skin? My oncologist thought it was possible that I had stitches that had never dissolved from the prior surgery causing these bumps.

Now I begin the oh so fun waiting game. It's always hurry up and wait isn't it!? Drives me crazy sometimes.  Since there was some color to it, I'm preparing myself for the worst. Sometimes it is easier to expect the worst so that I'm prepared for it. I'm just looking for other people's experiences, thoughts, encouragement. =)

Thanks!!

Be kind, for everyone is fighting a great battle. -Plato

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bonnieb's picture
Replies 3
Last reply 9/5/2010 - 7:38pm
Replies by: MollyB, Angela C, Janner

I had a mole off in September 09 that was malignant melanoma. Re-excised in Novmber and now there is a small mole in the middle of the scar tissue. How common is this? DO I get it checked out asap?? I am quite worried!!

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I had a mole off at my GP in September and after it came back melanoma I had it a larger excision in November 09. Now I have a small mole in the centre of the scar! EEK!!! Experiences??? Ideas? DO I call my GP, Plastic Surgeon or Dermatologist???

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Tim--MRF's picture
Replies 2
Last reply 8/31/2010 - 4:16pm

Her name is Estela Medrano, and she was a scientist at Baylor who focused on melanoma.  I have pasted a synopsis of her work below for those who are interested, but must confess that I have trouble finding it.

There exists a network of dedicated, brilliant scientists who work long hours for not a lot of pay, trying to gain further understanding into what causes melanoma.  These researchers lay the groundwork for all the clinical development that takes place, and every clinical trial had its origin in their work.  Their names will not be on the news, and they will not be interviewed for their view on melanoma.  But without them drugs that are all the rage now--ipi, PLX, etc.--wouldn't exist. 

I have been impressed with the collegiality and cooperation that is evident among this group.  We heard this evening about Estela's untimely death and my inbox is full of people expressing sympathy and a sense of loss.

She did not have melanoma, but she was a melanoma warrior, and the fight is a bit poorer for her passing.

 

Tim--MRF

 

Estela's work at Baylor:

The second project is focused on the role of the protein SKI in melanoma tumor progression. Ski encodes a nuclear protein that binds DNA in association with other proteins and can act as either an activator or repressor of transcription. Using the yeast two-hybrid system, we have demonstrated that SKI physically associates with Smad2 and Smad3, two transcriptional activators that mediate the TGF-beta response. SKI suppresses TGF-beta signaling by binding the MH2 domains of Smad2 and Smad3, and repressing promoters bound by these proteins and the common mediator Smad4. We propose that SKI functions as a potent oncogene in melanoma cells by counteracting the effect of the TGF-beta pathway that usually functions to suppress cellular transformation. We are analyzing additional SKI-protein interactions to determine their contribution to melanoma progression. Also, we have recently cloned the ski promoter to determine, by DNase foot-printing, electrophoretic mobility-band shift assays (EMSA), chromatin immunoprecipitation (ChIP), and reporter analysis, regulatory elements and factors involved in its activation during the malignant transformation of human melanocytes.

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esposir2's picture
Replies 38
Last reply 2/1/2011 - 4:10pm

hi has anyone else been diagnosed  with mucousal melanoma?

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Anonymous's picture
Anonymous
Replies 6
Last reply 8/30/2010 - 10:08pm
Replies by: Linda/Kentucky, Anonymous, Janner, mkummerle

Hi Everyone,

 

This might be a dumb question but can anyone tell me if bone mets hurt????

I have been having pain along the lower part of my spine. When I touch the bones in my spine in my lower part, the bones do not hurt. However,when I am lying down then get up. I feel pain. Of course, my mind jumps to the worst scenario.

Anyone experince bone mets in the spine or anywhere else, your feedback would be sincerely appreciated.

Thanks you for reading my post & replying.

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himynameiskevin's picture
Replies 11
Last reply 8/30/2010 - 10:01pm

I'm leaving in about 15 minutes to start IL-2 for the first time. I'll be gone for about a week. Please send some positive thoughts, prayers, or anything my way, I need all the help I can get. See you all in a week. (fingers crossed) :)

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BGL530830's picture
Replies 8
Last reply 8/31/2010 - 9:28pm

Husband had first dose on june 18, so it has been about 10 and a half weeks since then.  A few days ago he started having uncontrolled bms.  Prior to this he was always constipated, so we were kind of shocked.  His liver enzymes are also elevated.  He does have some disease in the liver.  He had a chest ct a couple weeks back due to fluid in the lungs and that also showed all the disease in his chest was stable, which was great news.  it just seems like in the past week his health has deteriorated quickly...  there are more bumps on his head and i even noticed a lump in his shoulder and side.  is it even possible that this is all from the ipi working or should i prepare myself for sad news?  his full body ct is tomorrow or tues and we get results the next day. 

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ErikaHouston2's picture
Replies 2
Last reply 8/30/2010 - 12:38pm
Replies by: Jim in Denver, PhyllisP

How long does it usually take you to get your results? Had PET CT on Friday @ 1pm .

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Bill G's picture
Replies 5
Last reply 8/30/2010 - 10:18am

At outset given odds 25% for  5year survival, because location on top of head 4mm+ tumor and numerous satellites

Bill G

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lovingwifedeb's picture
Replies 4
Last reply 9/1/2010 - 12:01am

I feel it most strongly after work as I am driving home in traffic when it’s quiet in the car, when I’m alone. This is when I have the most time to think about the last 6 weeks and what it means for my husband and I, and our future together. The tears are falling gently on my face as I drive home as I remember saying the words “for better or worse, for richer for poorer… in sickness and in health, I do”, when we got married 8 years ago. Yes, I realize this disease affects my husband most of all, but my heart is filling with an unknown fear that not one single person wants to talk about. I’m having a melt down, it has taken 6 weeks since I was given the news…

 

By the time I get home it’s time to water my plants, they have spent all day in the hot sun. They are thriving in the summer sun, I lift my face to feel its warmth and so it can lift my spirit. The sun, it gives life to my garden, my beautiful flowers and my red tomatoes. Why is it such a powerful gift and yet at the same time it can turn into such misery for my husband's health and for others? Why is it turning our lives upside down? Why now?

 

The more I learn about melanoma the more I worry about it and the harder it is to control my emotions. Doctor appointments, treatment options, (or lack of for Bob right now at stage 3), information overload (everyone has an opionion), family concerns, and husband’s health recuperation after surgery, work stress, and personal concerns for our future.

 

My heart is aching in unfamiliar places. The bottom line is I’m a control freak and this is definitely out of my control. I can’t walk in my husband’s shoes but I will try my best to walk right there beside him and be there for whatever decisions he makes for his treatments and what ever comes into our future. After that I am going to have to let this all go. (Easier said than done, I know…)

 

So, from this day forward I take each day as it comes, 24 hours at a time… IN HOPE, IN LOVE, IN GRACE. (breath in, breath out, breath in, breath out...)

 

From the perspective of the caregiver,

Deb

 

If you would like to leave Bob a message please send one here:

bob.rogers2010@gmail.com

 

If you would like to follow our family blog:

http://redesign08.blogspot.com/

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newmanmark's picture
Replies 3
Last reply 9/18/2011 - 4:46pm

Hello Everyone,

Its been a long time since I have posted on this website.  To be honest it wasn't easy for me to come on this site and read all of the various stories.  I'm still not sure it helps 100% of the time but I miss everyone I use to correspond with.  I aplogise for not posting more often.  I am now 4 months into my interferon treatment.  Its been tough but tolerable.  Nothing new has been discovered and I'm approaching a year from my diagnosis day!  I couldn't have done this without my friends and family by my side. 

The main reason I am writing is because I have recently been suffering from anxiety and I believe its because of the Interferon.  Did anyone else experience this?  If so I'd love to know how you treated it.  I'm currently on Cipralex but that doesn't seem to be helping.  It helps with the depression but not my anxiety.  Is there something natural that could help?  I'm not opposed to pharmaceuticals but I'd love to try a natural remedy first.

All my love

Mark

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There's an update on Jerry on the otbb.  He is making progress.

 

Jackie W

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MonicaD's picture
Replies 53
Last reply 6/5/2018 - 8:42am

Hi.  My name is Monica.  I'm 33 and was diagnosed on July 13th of this year with malignant melanoma from a mole that was removed from my lower leg.  Last week I had a sentinel node biopsy and am now awaiting results from that to see where we go from here.  The waiting since the initial diagnosis to now has been unbearable and I have another 3-4 weeks to wait for results.  I just need a game plan.  So far I have found this disease much more scary and tiring from a psychological perspective than a physical one.  I feel fine.  My blood work came back fine.  My lung x-ray came back clear.  I read a copy of my histology report and comparing it to what I've read online, I think at best I'll be Stage IIb since my mole was ulcerated but I have to wait for my node biopsy results to know if it's even a worse stage than that.  What I've found hard in my online searches is that there's really not much out there as testimonials of people who have gone through this journey with melanoma and survived.  I find myself yearning to hear people's stories but I'm having a hard time finding any which I find scary.  So, my question is, have you gone through this and how are you now?  I just want to hear that this can be beaten, even if only beaten a little at a time each time it's beaten.  I know if I survive that this disease is about being diligent and watching your moles, etc., and I know recurrences can and likely will happen, but still... can I beat it?  Have you beaten it?  I just want to hear something positive.  Nobody will tell me anything positive and I'm finding that that is just feeding into the fear that already exists inside of me.  I'm trying to stay positive and mostly I think I'm doing a good job of it but I admit I need help with it sometimes.  I don't need someone to tell me it's all going to be ok because I know there's a chance it won't be but I just want some positive stories I can store in my mind so that when I do feel scared I will have a tool to beat down the negative thoughts and keep hope alive within me.  Thanks. 

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