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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Manubuzzi's picture
Replies 13
Last reply 9/20/2012 - 11:31am

Greetings everyone,

Just a few lines to tell you that my mother (45 years old) has passed away on January 09th.

She was a great fighter and lived one really good year having this terrible disease, but she lost the battle..

We will miss her so much.... I cant believe that this have happened.

Thank you for all of you, from the bottom of my heart, for your kind words during this terrible period.

Good luck for you and yours! I really want the best for all of you.

Cheers from Argentina.

Manu

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thrashter's picture
Replies 4
Last reply 9/20/2012 - 10:19am

this is the second positive nodule removed in about 90 days. I did opt for wait and see after visiting my oncologist. PET scan in 2 weeks and i am having second thoughts about Interferon. I am now going from stage 3 a to stage 3 b. I feel like i need to do something vs. wait and see. My oncologist seems to not be a fan of interferon. Those of you who have had interferon at my staging would you do it again? Would you do the wait and see?

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PeterO's picture
Replies 4
Last reply 9/20/2012 - 6:11am
Replies by: Amanda, POW, PeterO, lhaley

It took time, prayer, research, and conversation with my medical team, but I've now settled on a plan for how to treat my stage IV disease. Here are my blog posts on how I arrived at my decision: www.theogler.blogpost.com.

www.theogler.blogspot.com

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Linny's picture
Replies 1
Last reply 9/20/2012 - 12:31am
Replies by: JerryfromFauq

A nice summary and explanation of teratment options:

http://chicago2012.asco.org/ASCODailyNews/MetastaticMelanoma.aspx

Stage III, Unknown Primary; 1 positive node in left axilla

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POW's picture
Replies 8
Last reply 9/19/2012 - 10:09pm

When my brother was diagnosed with brain mets, he was told not to drive because he could have a stroke or a seizure at any time. Does this mean that he can never drive again? Do other people with brain mets drive? 

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Maereard's picture
Replies 5
Last reply 9/19/2012 - 10:06pm

Hi I am new here.  Any information you can give me would be so greatly appeciated.  On Monday last week I was told I have malignant melanoma.  Breslow dept .25mm, Clark level 3.  Ulceration not identified and the volume of the dermal tumor was insufficient for mitotic index.  After panicing for three days thinking that the clarks level was the same as the stage, I came across a post on here that explained it is not.  That made me sleep a little better.  Originally when my dermatologist gave me the news he wanted to send me to a plastic surgeon to have a larger area removed.  The spot is located on my right shoulder blade.  The plastic surgeon could not get me in until the 24th, after showing up in the dermatologist office crying my eyes out he agreed to do the surgery himself this past Thursday.  I am currently typing with a railroad track of stitches down my shoulder:)  The original dermatopathology report was sent to my family doctor who has insisited that I see an oncologist.  I will see the oncologist tomorrow at 8:15.  I do not have the last results from Thursdays surgery back and probably will not until sometime next week.  I have a million questions and if someone could please shed some light on the darkness I feel right now I would be so appreciative.  The dermatologist seems to think this was found very early.  He says that the next test should come back all margins clear and I will just need follow up appointments to monitor for any new spots that might appear.  He thought originally that the family doctor would probably send me for a blood test and a chest x-ray.  I smoked when I was a teenager and thought it was cool.  I think the most I got to was a pack a week for several years.  I am now of course convinced that this means the melanoma has spread to my lungs.  I was not a sun worshipper.  I tried laying out for a tan and attempted the tanning bed a few times but it never worked in my favor so I gave up.  I have never been a huge fan of the sun because I burn.  I am an only child but come from a large Irish family and am the first to be diagnosed with this.  I have three children and currently am still nursing my nineteen month old daughter.  Does anyone know of a doctor that specializes in melanoma in Indiana or Kentucky?  I want to make sure I cover all angles in order to see my nineteen month old daughter grow up and go to college, get married, ect.  Has anyone has a breslow thickness as small as mine and still had to have lymph nodes removed?  Have they come back positive?  Has anyone heard of Dr. Stephen Schultz in Indianapolis, IN?  He is an oncologist with Community North Hospital but he does not have a website so I can not figure out how familiar he is with melanoma.  What state would I need to look in to find the best doctors?  Thank you for any help at all!

Beth Thompson

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/19/2012 - 8:47pm
Replies by: Anonymous, LynnLuc, Charlie S

Will there ever be an alternative to Interferon? Are we even close?

This wait and watch is killing me, but Interferon does not have the best outcome.

I am not up to date on the recent advances. Are there any?

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Anonymous's picture
Replies 4
Last reply 9/19/2012 - 4:03pm
Replies by: Anonymous, POW, sjl

I am trying to understand this article. Does this mean they are figuring out a way to make Chemo more effective against melanoma, or does it mean they know why?

http://www.sciencedaily.com/releases/2012/09/120917132351.htm

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cemcnair's picture
Replies 7
Last reply 9/19/2012 - 3:54pm
Replies by: cemcnair, Janner, Anonymous

New to this board. I had a mole removed last Wednesday because I'd noticed it'd gotten darker and not evenly so. It came back as a malignant melanoma. I am 15 weeks pregnant. They want to remove more tissue in three weeks which seems like a fairly minor procedure. I am very concerned though because I have read that melanoma can cross the placenta to the fetus. Does anyone have more information on this? Should I inform my OB? What are the real risks to my baby?!?

Thank you.

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Mandi0280's picture
Replies 6
Last reply 9/19/2012 - 1:49pm

Husband was diagnosed with stage 3b last October. Had wide excision on his chest and 20 something lymph nodes removed with 1 positive under his right arm. This was followed with a PET scan that showed nothing according to my husband oncologist. Fast forward and he has had several different scan since then that according to the dr hasn't shown anything. 3 months ago we go in to get routine CAT scan results from dr and he says everythig looks good & that there are 2 lymph nodes in the neck showing up as "larger than normal" but they have been there ever since the very first PET scan that my husband had but do not "light up" on the scan as being cancer.  (we were never told until this last visit that those lymph nodes were "larger than normal") So he says that any person can have "larger than normal" lymph nodes that mean nothing ...referring to anyone that has never even been diagnosed with melanoma. So he says that we will just keep a check on them to make sure they do not grow. I looked at the report and the nodes show "stable" .Has anyone ever herd of this before? Should I be asking for something more than just keeping a check on them? I like to think they are nothing since they don't light up on a PET but it makes me nervous. We go back for 3 months scans this Friday.

Thanks,

Mandi

Mandi

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gofamily's picture
Replies 2
Last reply 9/19/2012 - 12:19pm
Replies by: awillett1991, POW

My husband has stage 4 melanoma with metastasis to the liver. He was on Zelboraf which worked well until 1 month ago when a new tumor appeared and his liver tumor became active again on the PET scan. Does anyone know of clinical trials specifically for Zelboraf resistance?!

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Lori1976's picture
Replies 5
Last reply 9/19/2012 - 11:45am

I'm wondering if anyone else has both Melanoma and Crohn's Disease? I was diagnosed stage1 MM in 2000, NED until 2/12 when a biopsy showed MM insitu again on my abdomen.  In 2004 I was diagnosed with Crohn's Disease. It has been quite challenging treating an autoimmune disorder with a cancer history. I need my immune system in terms of keeping MM at bay, but it is that same immune system that is overactive in my intestines causing my body to attack itself.  I am not a good candidate for ant-TNF therapies and the immunomodulators also carry a cancer risk.  I am surely not the only one to be diagnosed with both diseases and I'm really searching for anyone with some advice. My doctors are at a loss, despite being treated in a University setting.

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Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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Hi all! Have a quick question. I completed IPI treatment the first week in January. Side effects continued through March, but ebbed substantially. Yesterday, all these months later, I had effects as if I was in the middle of treatment. Couldn't keep my eyes open I became so sleepy, then really bad itching, and when I was asleep I even drooled! Is this normal? And does it mean the Mel is rearing it's ugly head again? I had scans last month and have been NED since March. Thanks for the input! Bless you all and keep fighting!!

I can do all things through Christ who strengthens me.

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