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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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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PeterO's picture
Replies 2
Last reply 8/29/2012 - 2:24pm
Replies by: dellriol, kylez

My docs have a plan to treat my metastatic melanoma to the brain that calls for concurrent treatment with whole brain radiation and Yervoy. Anyone else been down this road? Would like to hear from you if you have been. I've just posted on my blog about my thoughts, doubts and convictions about this treatment plan: www.theogler.blogspot.com.

www.theogler.blogspot.com

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/29/2012 - 2:12pm
Replies by: dellriol, Anonymous, jmmm

I've been on Zelboraf for several months.  I know that others have talked about diarrhea as one of the side effects.  I haven't had any stomach issues with it (except for things tasting weird) but the last few days I've experienced diarrhea.  

What have your doctors told you to take if this happens?  Any suggestions?  I'll reach out to my doctors also.  In the mean time I'm making sure I drink lots of water and other liquids.  No stomach aches or nausea with it.  A little bloating but no cramps.  Just a gurgling stomach. 

Thanks!
 

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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mama1960's picture
Replies 6
Last reply 8/29/2012 - 1:26pm

Needle biopsy on lymph node in right groin came back positive. i have appointment with surgeon in Thursday to discuss lymph node dissection. Oncologist says we will follow up with radiation. So it's official....I'm stage 3. I have been looking at threads regarding the dissection, and it looks doable. if any one has anything to add, please jump in.

It is what it is.

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http://atlasgeneticsoncology.org/Tumors/SkinMelanomID5416.html

Atlas of Genetics and Cytogenetics in Oncology and Haematology

Lot to obsorb.

I'm me, not a statistic. Praying to not be one for years yet.

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Lauri England's picture
Replies 4
Last reply 8/28/2012 - 9:41pm

I have not seen these 2 people note on system for quite sometime.  Does anyone know how they are doing.  I had followed them for over a year and have not been on this website in quite a while.  I do hope all is well with them but does anyone know?  Thank you

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

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KMT2003's picture
Replies 9
Last reply 8/28/2012 - 9:01pm
Replies by: KMT2003, Cate, Anonymous, King, Tina D, dellriol, LynnLuc

Well I have only been a member for a month or so but have been dealing with melanoma since 2007. Please read my profile to get my story. On Thursday I went to Moffitt to do the prescreening for the clinical trial I was supposed to start tomorrow. I did the MRI, CT scan, blood work and all that jazz. We then met with Dr. Kudchadkar to go over results that afternoon. She came in will bad news... I can't do that trial anymore because the found some new areas of concern in my bones. Pretty sure it is melanoma... What a shock for me and my husband. The tears started flowing and I am not sure I heard anymore that she was telling us. I was scheduled to do an MRI locally tomorrow but it got rescheduled due to insurance not approving it yet. On Wednesday we will travel back to Moffitt to have the bone biopsy now and they are in the process of testing me for BRAF. Once we get all the results we will start a treatment plan. There are still some trials to do. It is just so overwhelming and scary. I am young with a wonderful husband and two small children so I'm scared to death that I won't be around for them. I also forgot to mention that in area of the new areas I have been having a dull pain for the last two weeks but never thought it would be related....

Kelly

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My docs have a plan to treat my metastatic melanoma to the brain that calls for concurrent treatment with whole brain radiation and Yervoy. Anyone else been down this road? Would like to hear from you if you have been. I've just posted on my blog about my thoughts, doubts and convictions about this treatment plan: www.theogler.blogspot.com.

www.theogler.blogspot.com

Login or register to post replies.

My docs have a plan to treat my metastatic melanoma to the brain that calls for concurrent treatment with whole brain radiation and Yervoy. Anyone else been down this road? Would like to hear from you if you have been. I've just posted on my blog about my thoughts, doubts and convictions about this treatment plan: www.theogler.blogspot.com.

www.theogler.blogspot.com

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MattF's picture
Replies 27
Last reply 8/28/2012 - 7:59pm
Replies by: MattF, Snickers60, Minnesota, LynnLuc, Erinmay22, Janner, Anonymous

I'm a 42 yo white male and I was diagnosed 13 August with a call from my dermatologist. I had a mole on my cheek forever but it started growing and even bleeding within the last 3 years, so I finally went to the doctor.

I have been going to other doctors, PCP and Neurologist for headaches and vision changes for the last 12 months. These have been guessed at as Cluster Migrains. Now with pathology report diagnosis I'm uncertain. 

Malignent Melanoma Tumor - Thickness unknown but over 1mm, Ulceration unknown, Mitotic Index 5/mm2, Clarks level IV-V, loosely Pathological staged as T2b

My dermatologist didn't think it was Melanoma so he did a shave biopsy rather than a punch. For this reason the pathologist couldn't get an accurate thickness, among other important pieces of information.

Now I'm just waiting on Surgical Oncology to call to make initial appointment.

My question is beyond brain tumor is it possible my melanoma has pread under my skin in a horizontal fashion creating headaches and sensitivity to touch?

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Needle biopsy on lymph node in right groin came back positive. i have appointment with surgeon in Thursday to discuss lymph node dissection. Oncologist says we will follow up with radiation. So it's official....I'm stage 3. I have been looking at threads regarding the dissection, and it looks doable. if any one has anything to add, please jump in.

It is what it is.

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Mickey n Jo's picture
Replies 6
Last reply 8/28/2012 - 2:01pm

Hi, my name is Jo and I am writing on behalf of my husband, Mickey. He was diagnosed as stage 4 melanoma in May 2012

and was put on Zelboraf within a week.  He's had all the usual side effects, nausea, hair loss, joint pain etc., but now

he is experiencing memory problems. He can't remember certain names or words and it's scary for him which creates

anxiety ( which he suffered from already). He had a brain MRI which came back OK, no mets. He also had a spinal

tap a week ago to rule out infection, but haven't gotten results yet. We were wondering if anyone else has had this

problem while on Zel.

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Snickers60's picture
Replies 8
Last reply 8/27/2012 - 7:23pm

We are 4 months downrange since Wayne started Zel.  He has just lost his eyelashes and most of his eyebrows.   He's very rlight anyway, but this has really given him the CHEMO LOOK !    He still has some hair, though looks a little like Kelsey Grammer or Jack Nickolson I tell him.   He looks like Jack a lot anyway but a lot better looking.  :-))  

He now looks SICK is what I am saying !    He is not a VAIN person, but has turned to caps for the weekend and I've found this fantastic oil for his skin, so it doesn't look or feel so THICK anymore.  

I understand that LIFE is the important thing - not vanity, but like everyone, this has it's challenges for work etc., and is hard reminder.

Did you all lose your eyebrows - eyelashes also ?    Too bad for men - no scarves - no wigs - no makeup.     I try pampering him a lot and giving him skin treatments etc. to help his overall grooming and feeling of self esteem and not LOOKING SICK. 

What's your experience ?

Nancy (devoted wife of 3 X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Jamietk's picture
Replies 5
Last reply 8/27/2012 - 2:38pm

Yesterday was my 7 year anniversary since my melanoma was removed. I assume I am NED. Not having any issues. Will see the Dr. at MDA on Nov 5th. Hope this gives some encouragement to others.

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