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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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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Following a stage 3 diagnosis, a complete lymph node dissection was performed with the following final diagnosis: "Twenty-one reactive lymph nodes with melanin containing histiocytes. Changes of previous bipsy site with melanin containing histiocytes."

The surgeon who read the report told us that this was terrific news, and that there was no evidence of melanoma in these 21 lymph nodes or other tissue, but he said that we should discuss the pathology further with a medical oncologist. We have an appointment next week, and before announcing the good news to everyone, I want to try to understand why the lymph nodes were reactive if they weree cancer-free, and why the histiocytes were mentioned.

If anyone has any insight into this pathology, we would greatly appreciate it. Our next step is to enroll in the ipi/interferon clinical trial, no matter what these results show. Thank you so much.

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/19/2012 - 7:38am
Replies by: Wally, Anonymous, SStamps, rbruce, Swanee, boot2aboot

Hi,

 

I am a stage 4 and have active disease on my legs & lungs.

 

I have had "one" sore rib (about 1/3 of the rib) for about 3 weeks. Of course, my mind thinks it is mel. I do not remember straining or hurting my rib cage.

 

I sincerely would appreciate any  feedback from  those with mets on the rib.  What are the symptoms?

 

Thank you for taking the time to reply tomy post.

 

Mary

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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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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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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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sharon0803's picture
Replies 13
Last reply 4/18/2012 - 6:42pm

 

Hello All,

 

I am new to the forum, I have however, been lurking.  I wanted to introduce myself and my current diagnosis.

 

My name is Sharon and I am from Illinois, I have recently been diagnosed with Stage 3B.  I have had the WLE and the RGD.  I saw the Oncologist last week to go over follow up treatment.  He did want me to go into a clinical trial.  The trial would pit an FDA approved drug for Stage 4 (IPPY) against the Interferon.  A machine would pick which drug I did….  I did not want to do the interferon, but would be willing to take my chances in the clinical trial.  After researching clinical trials and my insurance, I found it would be an expensive option (insurance will not pay anything) without any say so in the drug.  Therefore, I have not opted not to go in.

 

I was hoping to hear from others with Stage 3B and some of their follow up treatments,  I am especially interested in Brain scans… my Doctor has not told me of any recommended scans that would take place IF I opted not to go into a clinical trial.     

 

Looking forward to reading other’s post.

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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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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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Janner's picture
Replies 18
Last reply 4/18/2012 - 11:22am

I post this mostly for those newly diagnosed early stagers - to give them perspective.  20 years ago I was diagnosed with my first melanoma.  No internet back then.  Even the medical library at the University had scarce material on melanoma - and what it did have was doom and gloom.  I really didn't know what life had in store for me - melanoma-wise, that is.  There was no one I could ask questions of, no resources to scour.  I did one or two followups with my derm, but then my insurance changed and I didn't see another derm for 8 years.  That's when I noticed what I was sure was melanoma primary #2.  Primary #3 followed the next year.  I've had 2 stage IB primaries and one in situ.  I am NED from all of them.  I became an internet melanoma researcher after #3.  Learned too much for my own good.  Who'd have thought the knowledge would come into play again in my own family a few years later.  Both of my adoptive parents have been diagnosed with melanoma in their 80's.  What are the odds? 

Anyway, the real point of this posting is to show that MOST early stagers go on to live normal lives and have no need to come back to this board for help.  I can't tell you the number of early stagers who have come and moved on over the 10 years I've been on this board.  Life does go on.  I know there are warriors on this board who started out as stage I and have advanced, but most do not.  I want to show that there is the other side of the coin and that this BB is not a representative sample for the early stagers.

Janner

http://www.MelanomaResources.info

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Gene_S's picture
Replies 10
Last reply 4/18/2012 - 7:14am

 

Scientists reverse stance on sun and cancer: Now they admit sunlight can prevent skin cancer

Learn more: http://www.naturalnews.com/032533_sun_exposure_skin_cancer.html#ixzz1Nrwxbjb9

I am a firm believer in this. The only way to know your vitamin D levels is to have them tested.

The best test is the "25-hydroxy" vitamin D test.

Best wishes,

Gene

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

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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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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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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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AnnaBanana30's picture
Replies 1
Last reply 4/17/2012 - 11:07pm
Replies by: imissmommy2003

I just had to share this...I just ordered a bunch of awarness bracelets and plan to sell them to everyone I know for $5 a piece and give all the proceeds to research.

I thought of this idea for the bracelet the other day. I ordered a white bracelet to represent pale skin. Then in big black writing I put Mela-NO-MORE!! and two black Melanoma awarness ribbons on either side.

On the back side I put a link to this website www.melanoma.org

I am really hoping to raise some money for research and also spread awarness around my group of friends and our community. I live on the lake and have never gone out in the sun (red hair and freckles) but ALL my friends do and I'm really hoping the current situation with my dad and myself will hep them realize they need to be careful and get checked!

I just placed my order and had to share.

I hope everyone has a wonderful day.

Anna

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