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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kinthai82's picture
Replies 3
Last reply 10/7/2010 - 8:32pm

Hello all,

My name is Cynthia Chen. I am a medical student in California and will be graduating in May of 2010. I have long been an advocate of raising awareness, fundraising, and research for melanoma.

I, along with another one of my classmates, would like to create a video on melanoma awareness.  I want to recruit several people to put in the video who are either melanoma survivors or friends/family members who have lost someone to melanoma.

If interested, please contact me via this post, email (cynthiaLchen@gmail.com), or call me at 510-717-9782, and I will provide more details.

Thank you for your time! We will win the fight against this awful cancer!

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Hi Lauren,

 

Glad tosee you posting. How is Jenna doing? Hope her treatment is working.God Bless and hoping you have good news to post.

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/7/2010 - 7:21pm
Replies by: EricNJill

So happy to see you are posting. How are you doing?I hope Eric's treatment is going well. Stay positive & good luck.

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dkbart's picture
Replies 4
Last reply 10/7/2010 - 6:05pm

I have never posted on this site.  Just posting that I have been 25 months NED since being diagnosed in August of 08'.   I wish all the best and hope for everyone who participates on MPIP.

Dave Bartels

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Hi Everyone.  I haven't logged in in a long time.  I am here to reassure everyone that it can be done.  Four years after developing both lung and brain metastasis, I uave noevidence of active disease.  A few old, asymptomatoc  tumors still show up on scans but they have not changed in over a year.  I am "stable" and the prognosis that I will remain stable is very, very good.

 

If you wanr to read about all the treatments I have had I just updated my medical history on my profile.  Just search for Mark_Catskill.

 

I will try to visit more frequently to share my experience and knowledge with the MPIP community.

 

Mark from Catskill
 

I have cancer but cancer does not have me.

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cubsgirl21's picture
Replies 15
Last reply 10/7/2010 - 1:26pm

I know this board is more geared toward later staged melanoma patients, but I'm still really scared for my fiancee. He's 35 and had a mole removed and it tested positive for melanoma stage ll. He's scheduled for surgery in a few weeks at U of M in Ann Arbor. I'm just wondering what to expect? He has a consultation at 1 and then surgery at 2. How long does the surgery last? I expected him to have more tests done before they start removing any skin, but i'm not sure what they're going to do at the consultation. If anyone has any advice for us, let me know. I'm really scared because we have a 2 year old daughter and I want my fiancee(her father) to watch her grow up and graduate school, etc. How long is Chris (the fiancee) going to live after he gets the cancer removed?

 

-Very Worried

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/7/2010 - 10:59am
Replies by: EricNJill, Bonnie Lea, Anonymous

Hello everyone,

I have Stage 1 melanoma history and recently had moderately atypical nevus removed by my plastic surgeon with clear margins. Yesterday I noticed a bluish line just in the middle of a scar. I am worried now about it: is it bruise, blood vessel or pigment???? Any thoughts? It drives me crazy...

Thanks!

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Kell's picture
Replies 13
Last reply 10/7/2010 - 9:00am

My Mom was diagnosed with melanoma in April. She had it removed in May and had 5 high doses of radiation. Everything was supposed to be ok or so we thought. Fast forward to Sept. 1st when I got a call that she had severe abdominal pain. Rushed her to the hospital where they did a cat scan and said they saw tumors in her intestines. She continued in pain until 9 days and so many tests later she went for another cat scan where a doctor saw that she had a hole and if she didn't have emergency surgery the toxins would go through her body and she would die. Preceded with the surgery where they repaired the hole and removed one of the tumors but weren't able to get to the other one. At first she seemed to be recovering then she got an infection and needed to have a drain put in. Last week I could see that melanoma was winning this battle and was about to take another persons life. Just watching her there in so much pain yet trying to hold on for her family was heartbreaking. On this past Saturday the doctor told us it's not good and if there was anyone that needed to see her they should come. Watching my Mom die when she had so much life and love left to give makes me so sad. For those of you that are dealing with this disease I hope the best for you.

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Lori C's picture
Replies 12
Last reply 10/6/2010 - 8:36pm

On Wednesday night, Will stopped vomiting from the chemo and by Thursday morning felt better, except his voice was a little raspy.  By Thursday  night he was coughing and wheezing and I called an ambulance because he seemed short of breath.  They took him to a local community hospital.  He has pneumonia.  It's being treated and he is stable and improving, however, the experience was really awful.  The doctors at the community hospital were absolutely clueless about stage IV melanoma treatments and their side effects.  They told me he would die Friday night, they told me there was probably no point in treating this, melanoma was untreatable anyway, etc.  When I said "He's been responding well to the chemo", the doctor snapped, "What does THAT mean?"  I hauled out his latest CT scan ("reduction in tumors" , etc.) and the guy ignored it and sent hospice people in to me who told me, "Melanoma is a horrible cancer and there is no treatment that works."    I kept explaining that as long as he was responding to the treatment he had a chance at prolonging survival and opportunity for more targeted treatments, but was treated as though I was waving entrails and bones and claiming the fairies would heal him. 

I had his oncologist staff from Rush call the hospital and talk to them and things have improved since then.  He was moved out of ICU within 48 hours, he's getting breathing treatments and his appetite has improved.  His oncological nurse said that while his next chemo dose may be altered by this, this was NOT unexpected at 8-10 days post chemo when his immune system is so low..  What an experience, though.   I am anxious to get him back home and to his proper doctors. 

If I'd had any warning, I would have definitely just gotten him to Rush asap.  But this came on so fast that I didn't - and with breathing trouble, I was too fearful to drive him myself.   With his oncology staff insisting to the community hospital staff that this is "an acute crisis that is treatable", things have turned around but this was a big eye opener.  Stay away from medical staff who don't understand melanoma!

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Ranisa's picture
Replies 4
Last reply 10/6/2010 - 7:01pm

path report #1
Ten cross sections of four deifferent lymph nodes are examined on multiple slides. All cross sections are immunostained for HMB45. On one slide only, slide B2, in a subcapsular location four cells exhibit immunoreactivity for HMB45 staining. The cells are not cytologically abnormal. I can't say with certainty they represent malignant melanoma. They could represent nuvus cells within a lymph node.

Sent the slides to Mayo and here is what they said.....

I am writing regarding the material that you sent from RB, a 32-year-old women. These are very interesting and challenging slides. I am in complete agreement with the original diagnosis of malignant melanoma on the right leg. There are occasional mitotic figures present with lision as well as the measured depth of 1.1 mm. Sentinel lymph node is quite interesting. On H&E, there is a clear-cut deposition of melanocystic type cells present within the capsule of the nevus. A few of these cells stain positive for HMB-45, but the vast majority of them do not stain for HMB-45. This is an intersting pattern in that the majority of capsular melanocytic nevi are Melan-A/Mart-1 positive, but these cells as well as their architectural location that these are most consistent with a capsular melanocytic nevus.

My questions are.....
1. they say "nothing to be worried about" but then I heard something about a micro-matasti.....what is that, and should I be worried?
2. I was dx with a 2a, but no ulceration and with it being a depth of 1.1 wouldn't that be a stage1???

Thanks for reading and for those that reply...thanks for that too!

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/6/2010 - 5:10pm
Replies by: lhaley

Can Melanoma cause a burning type pain in the groin area?

Thank you.

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Ranisa's picture
Replies 2
Last reply 10/6/2010 - 3:48pm
Replies by: Ranisa, Anonymous

Here is a link to my blog with my path results.... has anyone had anything simular with the staining?  AND why can't we copypaste straight on here?  It would have been so much easier.

Thanks everyone!

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Ranisa's picture
Replies 6
Last reply 10/6/2010 - 3:24pm
Replies by: Ranisa, bill58

Hi everyone.  New here and thought that this would be a great place to find a new doctor.  I will be moving to the Chicago area and need a new Derm and Oncolgist.  I planning the move soon and want to schedule appointments ........ I know the wait can be long for new patients.

 

Thanks everyone.

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bluepeople's picture
Replies 14
Last reply 10/6/2010 - 2:43pm

So my hubby was diagnosed with stage 2b, 2c melanoma.  He had 2 spots removed, checked both sentinal nodes which were clear.  Still a little worried since one spot was pretty deep.  PETscan next week, crossing our fingers that it hasn't spread anywhere.  He is supposed to start high dose interferon in November, then the 11 months of maintenance low dose.  From those of you who have done this, and are stage 2, what was your experience?  I keep hearing that it is a year of hell, and that lots of people don't last the whole year for various reasons.  It seems that this is a proactive way to battle the cancer I guess.  I'm pretty freaked out since my dad died from melanoma in 2000 (although he didn't catch it till it was pretty advanced).  Are there other options?  Thanks for any input.

Akilyn

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Bruce in NH's picture
Replies 8
Last reply 10/6/2010 - 2:15pm

Today is really a wonderful day. It seems like only yesterday that I was awaken by my wife at 4AM while on a business trip to Singapore, telling me that the mole I had removed prior to leaving was melanoma. Singapore is 12 hours time difference from my home in New England. I never felt so alone. But now I can celebrate 10 years of living beyond that day, thanks to God, wonderful physicians and medicines and great family and friends. I thought it important to share this milestone with those of you on the board who have recently been diagnosed with melanoma. There is a lot of support for you here, and we will try our best to see that you survive this disease as many of us have over the years. Take care, fight hard and have a wonderful weekend!

Bruce in NH

Stage IV since December, 2008

www.survivingmelanoma.com

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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