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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aldakota22's picture
Replies 8
Last reply 4/19/2012 - 6:52pm

Saw Dr. Anna Pavlick at NYU on Monday.Highl respected melanoma specialist & compassionate dr.. Knows I traveled to see her so made sure cat scans & MRI of brain (never had one done) scheduled and approved that afternoon.Last cat scans were done 7-29-2011.Neither her or I could understand why my prior oncologist waited so long.Been on Zelboraf since 9/12/11.My scans show reduction of 50-75%.No other tumors other than orignal site and brain MRI is clear.Always told had a clear head now i can prove it.Just wanted to share positive news with everybody .Read enough negative posts its always good to post positve results.Pray everyone fighting can post good news.All the best to all .  A very happy Al

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himynameiskevin's picture
Replies 20
Last reply 4/23/2012 - 11:56pm

Hi everyone, I've been meaning and wanting to update, just haven't had anything to update on. But as of today, I've been on Zelboraf for six weeks, no noticeable side effects yet, not sure if that's a good or bad thing. One day I could feel the sun effecting/warming my skin a little quicker than normal. So I headed inside and have been really smart about my exposure since then. UPF clothing, umbrellas and such, and keeping a good eye out for any changes in my skin.

As for the good news, I had a PET/CT on Monday, my first one since starting Zelboraf. The report states that the things in my lungs are getting smaller. Finally. :) Of all the tumors/nodules in there, the largest, which was 4 - 4.5 cm in diameter a couple months ago is now reported at 2.5 -3.5 cm I think. And everything else inside me appears to be clear and normal. I know with Zelboraf, it’s most likely just a temporary fix, but maybe not, I've heard of a few people going on a year or two on the drug, and that gives me hope. Either way, it's a start, and will hopefully buy some time, maybe open up some other options. As for that steroid I'm on, I’ve tapered down from 4mg/morn and 4mg/night to just 1mg in the morning with just under a week to go until I'm completely off it. That'll be great, for it's had me feeling pretty crummy from time to time the last two months. I’ve got a follow up brain MRI on May 1st, and a couple appointments the following week, to talk and schedule another body scan. And that's it for now. Hopefully I'll be back to read and write more good news. Until then, always hoping for the best, for all of us.

-Kevin
 

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natasha's picture
Replies 2
Last reply 4/18/2012 - 12:11pm
Replies by: natasha, TSchulz

Hi!

I am sorry for posting to many questions here .but I am still confused over some parts of my path report.

The conclusion of my report sounds as  '' This is a severely atypical melanocytis lesion. The lesion is small and not all the features of melanoma are present , but , at worst , the appearanse could represent an early superficial spreading melanoma.No vertical growth present.  Diagnosys Melanoma radial phase AT WORST.''

What does this at worst means?

Looks like they are not sure I had melanoma at all.

Did anyone have the same confusing report?

Thanks a lot for all uour support

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Jeff's Mom's picture
Replies 7
Last reply 4/18/2012 - 9:48pm

Quick question - is anyone on the Yervoy/Zelboraf combination trial?  It's being offered at Dana Farber, UCLA and Sloan.  It looks like prior Zelboraf is an exclusion, but we are not sure.  Here's the link and information from UCLA's Jonsson Cancer Center:

http://www.cancer.ucla.edu/index.aspx?page=51&id=10964

Jeff is now on Zelboraf and doing well (side effects are mild), but we would like to have a real secure Plan B in place and this trial looks promising.  Also, has anyone heard of a Zelboraf/Anti-Pd 1 trial coming up?   

Thanks,

Bridgette (Jeff's Mom)

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/19/2012 - 4:52pm
Replies by: Anonymous, Janner, ckratina, LynnLuc

I was recently diagnosed with Melanoma in situ on my neck in March of this year.  Had WLE performed a couple of weeks later and pathology report came back clear.  I now have developed  a swollen lymph node directly  below the Incision.  Should I be concerned or am i just being paranoid? The original biopsy was done with a shave rather than excision even though my derm suspected it was a melanoma.  I understand that melanoma in situ is located in the epidermis and non invasive.  The surgical oncologist told me that he was going to take 1 cm margins because the melanoma was in the margins of the orginal biopsy.  I am going back to the surgical oncologist for a follow up visit in 1 week.

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DustinP's picture
Replies 1
Last reply 4/18/2012 - 6:15pm
Replies by: teach

My name is Dustin and I am currently a 3rd year medical student.  I volunteer with a group named Outrun the Sun, which supports melanoma research and skin cancer prevention education.  I wanted to invite you to learn about and participate in our first annual national Race in May.  This event will complement our 8th annual Outrun the Sun race in Indianapolis, IN.  

The Race in May is a "virtual, yet real" run/walk that will occur throughout May (National Melanoma and Skin Cancer Awareness month) and anyone can participate no matter where you live.  You can make this event whatever you want it to be by creating a team or by participating on your own. Here's a link to the registration web site. www.raceinmay.kintera.org.  

Outrun the Sun, Inc. is dedicated to building national awareness of melanoma and other skin cancers, educating communities about preventive measures that reduce melanoma’s incidence rate, and to raising funds for melanoma research, leading to effective treatments and a potential cure.  For more information on Outrun the Sun please visit our website www.outrunthesun.org

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imissmommy2003's picture
Replies 1
Last reply 4/18/2012 - 11:12pm
Replies by: KRob

Hello my name is Mariah Larsen; I am 17 years old and I lost my mother to melanoma in June of 2003. I am currently a Junior at Rogers High School in Spokane Washington and am working on my culmanating project. My project is on melanoma. I want to do a docudrama on the effects of melanoma. I would really love it if a parent has lost a teenager to melanoma, that is willing to be interviewed for a good cause, to email me, or reply to this post. If you are willing to do this, please put the subject as Help with senior project. Thank you for your time

Live Life to the fullest, and live with no regrets because at one moment, because at one moment it is what you wanted. Music is life. Love your mommy no matter what.

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BarbieGirl's picture
Replies 7
Last reply 4/20/2012 - 12:14am

I spoke with Allen just a bit ago, and found out his wife, Carol, passed away peacefully on April 14th.  A 'celebration' of her life was held today.  Even though Carol didn't have melanoma, I feel this needed to be posted on the main board.  Allen hung around here for many, many years sharing his knowledge, wisdom, encouragement, hope and grief with so many.  His family is there with him, and he said he's doing okay; just glad that Carol is now pain free in Heaven.  Carol and Allen would have celebrated their 40th wedding anniversary this year;  and she spent many of those years by Allen's side, fighting this beast.  She encouraged him to do what he felt he needed to do, and go where he felt he needed to go, to fight his melanoma.  Allen hasn't posted much here since the bulletin board changed, and his computer crashed, so he lost all his contacts.  If you'd like to contact him, his email address is redneck_77 @ att.net (no spaces).

I've met Allen--he even stayed overnight once in my barbie room! =)  I wanted to meet Carol sooo much, especially when I was in Ft. Lauderdale last summer, but things just didn't work out.  I chatted with her on the phone several times over the last few years.  My heart is breaking right now.  Please keep Allen and the family in your hearts, thoughts and prayers.

I love you, Allen, and I'm so sorry.  There are no words, only tears......

*Hugz* from my heart to yours,

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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matthew82wa's picture
Replies 6
Last reply 4/18/2012 - 1:45am

My name is Matthew I live in Leavenworth WA and I am planning on doing a fundraiser this summer to Hike For A Cure I lost a cousin to Melanoma last year Hike For A Cure is what my Foundation is called

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Lisa13's picture
Replies 24
Last reply 4/23/2012 - 6:09pm

Why is this happening??  Why would my brain tumour be growing since I had it done last November and now they say there's nothing they can do. Why can't people by resected or cyberknife!!

Some body help. I'm completely freaking out.

Many impossible things have been accomplished for those who refuse to quit

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Snickers60's picture
Replies 6
Last reply 4/18/2012 - 11:21pm

It's been a LONGGGG time sine my hubby and I have been here.   He has been free of melanoma since Oct. 1999 when he had a melanoma removed from his right ear lobe !   They cut the lobe off - did sentinel node biopsy, which was clean and we went to M. D. Anderson for 8 years.   We were released to our Doc here upon our own request and he has done an excellent job of caring for him.

On Feb. 29th, Wayne (the patient) had his physical - excellent helath - great blood work - cholesterol a little high.  Doc suggested he might want to do Calcium scan because most of his family dropped dead from heart attacks.   On a whim, he did.   The Doc called......told him he had a good bit of plaque, but the problem was no longer that.  There was a Shadow on his left lung and he thought they should see about it pronto.   Long story short - had the needle biopsy and it was MELANOMA !  Headed for M. D. ANDERSON as soon as we could get there after test had been sent yada yada.   Did PET SCAN - BRAIN MRI - Blood.    7 METS !    2 in left lung - 1 in abdomen - 1 on right leg - 1 in spine at L-5 - 1 in liver - and I lost my mind on the 7th one.  I'm pretty crazy right now.  

I don't have to tell you what we're going through.   We will go back to M. D. on Monday to see Doc one more time, and start ZELBRAF !   The Brain MRI was clean so because of that they decided not to do Bio-chem which was the original plan.    We're happy about that........I THINK !

I am his wife - NANCY !    Hi NANCY !    HEY YA'LL !   And we are trying to breathe !!!!!!!   Scared............but trying to TRUST GOD and not walk in FEAR ! 

I (Nancy) especially need to talk.   I'm coming undone, because guess what, I've already been shut in and shut down sick with Fibro and you name it for the last 30 years, and how can we possibly go through this with no one well.  We have a fantastic marriage........the kind folks dream about.   The NOTEBOOK Kind.......so close.........too close and not much family.   Only son is in Charlotte about 12 hours away struggling to live after losing his job in the recession.  

I feel like I am drowning....................he has taken care of me all these years.   Sometimes I'm too weak to even carry my purse and he does that too.  Have only gotten myself to Walmart one exit down about 5 times in the last year.   Was off the operating table only 2 weeks when we learned this.  Have liver disease (but not cancer) had a nasty gallbladder removed and all that on top of a dozen other things like the Fibro and CFS and several bad injuries from a wreck and 2 falls.   HOW WILL WE DO THIS.............

WHAT WAS GOD THINKING......................

I welcome any an all input and apologize for the long post right out of the shute !!!   

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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Anonymous's picture
Anonymous
Replies 1
Last reply 4/17/2012 - 11:49pm
Replies by: Swanee

Hi, 

 

Does anyone know how Kevin is diong on Zelboraf?

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Anonymous's picture
Replies 2
Last reply 4/17/2012 - 1:23pm
Replies by: JerryfromFauq, Phil S

My beautiful, wonderful Mother, age 60 was diagnosed last Thursday with anal melanoma.  I am looking for any advise on the most experienced doctors or clinics with this kind of melanoma.  We live live in Calgary, Canada and I am certain that doctors here do not have any experience in anal melanoma.  I need the very best treatment for my Mom, I will and can travel anywhere.  She will have her PET scan on Friday.  Please help us if you have any information on doctors and clinincs.  Thank you.

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natasha's picture
Replies 3
Last reply 4/18/2012 - 12:09am
Replies by: imissmommy2003, SarahS

Hello everyone !

Today I had my first sheduled follow up appointment with Doctors in Adenbrooks hospital Cambridge .

Doctor checked my all body (but it took about 2 minutes for her ) and said all moles look fine.I am a bit suprised full body check is so quick .

I had question about pregnancy and I was told I can go ahead with what ( but I am not sure myself and very scared).

I was told 0.2mm radial growth melanoma gives me very good chanse to survive and have children:)

Doctor checked my lymthnodes as well and my Wide excision scar .

So far so good !!!!!!!

Natasha , 31 Years old lady from UK

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MeNDave's picture
Replies 11
Last reply 4/20/2012 - 12:36pm

Well, we've had a heck of a week.  Dave and I visited with the trial nurse for the MDX-1105 last Wednesday, and they requested a brain MRI prior to starting.  A lumbar spine MRI indicated a bulging disk which is causing Dave's back pain (done on Tuesday), but also diffuse bone mets to the spine.  On Wednesday we travelled to UPMCs Hillman Cancer Center for the MK-3475 trial, but the only seat left is for post IPI patients.  Back to Roswell Friday, and an upper spine MRI showed additional diffuse mets to the upper spine, and brain MRI today showed 6 small (all less than a centimeter) lesions on the brain.  So next up is gamma knife on Wednesday, and then he will start IPI Tuesday (hopefully).

I sometimes want to ask if they are reading HIS scan results, as after all this transpired today, Dave went back to work - he even amazed the neurosurgeon...

Any advice on gamma knife is much appreciated - he plans on going to work on Thursday.  He amazes me.

All my best to all you,

Maria

Don't ever, EVER, give up!

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