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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MACK under the knife's picture
Replies 5
Last reply 2/11/2011 - 6:24pm

So after a right side full neck and face  surgery, They removed a tumor the size of a small lemon. They performed several weeks of radiation and here we go again. Looks like they didn't get it all as I have another lump growing in the same area as before. Looks like I am headed in for another slice and dice with radiation and this time I think I will have no choice but to have chemo. Alittle nervous with the chemo as I have seen the effects. How do you make a kid believe your gonna be fine when that stuff brings you so close to death. My wife and I have talked about when we'll tell her if chemo is necessary but man this is rough on her she doesn't need this. I can deal with all this but I feel bad when she starts asking me if I will be here  to walk her down the asile. She is 13 how do you answer. I put on the tough guy and say I will be here as long as I can and I'm not ready to leave. She doesn't buy it. It also hurts that we have no money for the things she has been use to doing. Paying for the meds and the hotels and hospitals has made it hard. Keeping the mortagage and utilities paid but not knowing what happens if the lay me off . Hoping for the best prepping for the worst.

 

Thanks for listening

 

Mac under The Knife

Nothing is as important as this moment, Your life can be changed in a single Moment and you can live a lifetime in a moment if you believe

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Rick W's picture
Replies 1
Last reply 2/11/2011 - 10:13am
Replies by: y'all Come In

FYI:

Protein involved in early steps of melanoma development revealed

 

Biomarker test shows promise for melanoma diagnosis

 

Novel immune system-based gene therapy induces strong responses in metastatic melanoma, ...

 

Mount Sinai researchers make major breakthrough in melanoma research

 

SkinzWraps Secures Exclusive Distribution Agreement for Nanotech UV Protection Spray

 

Clinicians cite time, patient embarrassment as barriers to performing skin cancer exams

 

Ultraviolet light helps skin cancer cells thrive, researchers report

 

Childhood cancer research in danger

 

Researchers predict nearly 1.3 million cancer deaths in Europe in 2011

 

Conceptualizing cancer cells as ancient 'toolkit'

 

Generic drug may improve the effectiveness of cancer nanotherapies

 

Discovery of a biochemical basis for broccoli's cancer-fighting ability

 

Infiltrating cancer's recruitment center

 

Unrealistic optimism appears common in early cancer trials

 

Researchers use cell 'profiling' to detect abnormalities -- including cancer

 

Cancer Research Institute invests $450k in Oncovir to manufacture powerful immune stimulant

 

Contagious cancer thrives in dogs by adopting host's genes

 

New European collaboration on cancer research

 

MIT scientists discover cancer-fighting role for cells

 

Molecular battle in cancer cells offers clues for treatment

 

Depression in cancer patients might be less common than previously thought

 

Funding to improve cancer survival rates

 

Projections of cancer care costs in the US: 2010-2020

 

Cancer costs projected to reach at least $158 billion in 2020

 

Cancer cell survival is not 'miR-ly' dependent on p53

 

VIB-K.U. Leuven scientists clear the way to alternative anti-angiogenic cancer therapy

 

Cancer in a single catastrophe

 

Steering cancer inflammation to inhibit tumor growth and spread

 

Punctuated evolution in cancer genomes

 

Protein wields phosphate group to inhibit cancer metastasis

 

Advancements in fertility preservation provide oncology patients new options

 

National Cancer Institute renews Cancer Center designation for Huntsman Cancer Institute

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Hello, Ive been visiting this site for almost a decade since I was diagnosed in 2001. I never fail to be amazed by the level of support you provide for each other.I am stage IIIb and have now been NED for seven years. I consider myself to be very lucky indeed and in some ways the last ten years have been the best of my life. I took early retirement when I was diagnosed, I have a wonderful wife, five great kids and six grandchildren (born since my diagnosis). However I am always aware that the cloud of melanoma does not go away and that many people have not been as lucky as I have been up to now.I am taking part in a charity walk to raise money for The Royal Marsden Hospital, where I have recieved outstanding care. If anyone would like to help please go to http://www.justgiving.com/mike-snelle Thankyou!

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CLPrice31's picture
Replies 25
Last reply 2/18/2011 - 11:58pm

Hi all! I am the latest newbie...stage 3, "some would say stage 4" 23 year old from Virginia.

It started similiarly to many other stories. I was washing the dishes, had an itch, scratched my back and felt something unusual: the mole on my left shoulder felt like a scab. When I had my boyfriend look at it, he realized there was a clear fluid coming from it. Although the mole had healed by my appoinment with my dermatologist, I decided to have it checked out anyway. He seemed confident it was nothing, but just to be sure, he removed it.

On January 10, 2011 I went in to have my stiches removed. I am joking with the nurse, making plans for my evening, when the doctor walks in. I hear, blah, blah blah, "Malignant Melanoma. No, I wish I was joking."

Oh.

That is SO not what I want to hear...

On January 26, 2011 I went in for a wide excision and a lymph node biopsy. Unfortunately for me, 4 areas lit up when the tech's injected the dye: both armpits, both sides of my neck. Prior to rolling me into the OR, my surgeon let me know that if he could find the lymph nodes, he was removing them. Waking up from surgery, he, who I refer to as Dr. Pink (breast cancer advocate,) was right there...Yes, he removed nodes from all 4 areas. Yes, it's going to hurt for a while.

(Dr. Pink was right about the pain...OUCH. And the numbness I still feel 2 weeks later? Very odd. Lucky for me, my body rejected either the tape they used to cover the incisions or the glue used to seal me shut...Now I am covered in an itchy, raw, red rash. I started an antibiotic a week ago, so far it is not working.)

A week of pain and waiting passes...the oncologist, (who I refer to as Dr. Bad Mustache. Love him but...!!) calls me into the office. 3 out of 4 locations tested positive for metastatic malignant melanoma.

More bad news.

Off I go for the PET CT and MRI...Both came back clear! Finally...good news!

Now...here's where I need help. My oncologist here believes Interferon is my only option at this point.

I don't like what I have read about Interferon so far.....Experiences from you all? Thoughts?

I have an appointment with Dr. Mark Dickson at Sloan Kettering in New York City on the 25th of this month. Any opinions here?

My oncologist here stressed that I am an "odd" case. My original melanoma was only 1.15 mm. It hardly made critera for additional testing. He admitted to us this week that he did not believe my lymph nodes would come back positive. And he especially could not believe that multiple locations were positive. In his words, "You are an odd case. Right now all we know is that it has the ability to spread."

Any advice, support, experiences...I would greatly appreciate hearing it all. Like many of you, I have a hard time resting. I am doing as much research as I can possibly do, but sometimes that does nothing but terrify me even more!

In advance, thank you for any and all help!

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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KellieSue's picture
Replies 16
Last reply 2/11/2011 - 1:45pm

My friend Jacque passed away peacefully last night at home. She was able to come home from the hospital yesterday and be with her family.

I know that she is without pain now and peaceful but I'm so angry and sad for her family now. She left behind a wonderful husband and 3 young girls.

www.caringbridge.org/visit/jacquelinekaalbergmoore

 

Kellie(from Iowa) Stage IV

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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jtheisen29's picture
Replies 4
Last reply 2/9/2011 - 5:02pm

Today I am happy to announce that my twin sister who was diagnosed while 5months pregnant with stage 3b on Sept 09 is injecting herself for the last time with interferon. She completed the 1 month of high dose and went on to the 12 month maintance. What a year!!!! Rollercoaster ride would be an understatement! We just had to learn to hold on for the ride!

Although throughout her treatment she was able to maintain a somewhat normal life, she dosen't remember a lot from the early months of having her new born baby. So my prayer for her is that now that she is done that she will be able to thrive and live life to the fullest mentally, physically, spiritually and that the memories she is able to make with her now 1 year old and 7 year old will be the best ever!

So I say GOOD BYE cancer!! Can't say our family will miss you at all. Little did you know that you would bring our family together, make us stronger, you taught  us how to laugh, taught us how to cry and most of all you taught us how to love!!! So cancer even though we hope that you are gone forever, the lesson will remain in our hearts. 

If you could please keep her in your thoughts and prayers her exit scans are Friday... We remain cautiously optimistic about the future and we pray for many more years of being N.E.D!! indecision

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Melanoma Mom's picture
Replies 9
Last reply 2/11/2011 - 10:00am

Our 14 year old son turned 15 yesterday! He makes us more proud by the day. He completed high-dose Interferon with flying colors and is now completing week 5 of low-dose. He administers his own shots with no trouble. He returned to basketball a few weeks ago and last night he scored 5 points! A very special birthday, as he hadn't yet scored in a game this season so that felt really good to him. He is currently getting all A's at a tough prep school. He is so strong, positive and amazing. My son is my hero!

PET/CT/brain MRI booked for mid-March here in Maine and then another trip to Dana-Farber in April. We have started a Relay for Life team and our team name is NED. :) We are meeting with our Make A Wish reps today for the first time. Our son is thinking he would like to go to Alaska.

Stay strong, everyone! Every day gets us closer to a cure. 

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lhaley's picture
Replies 15
Last reply 2/15/2011 - 1:17pm

Cystoscopy was clear today!!!!  The Doctor was as excited as I was.  It's now been 23 months since the original bladder tumor was found - I do know now that it had been there for many months. Next tumor showed up 4 months later and another surgery.  Just as they decided to do a wide excision my urology oncologist just decided that he knew my quality of life would be impaired with running to the bathroom every 30 min. or so. There was talk about taking the bladder and he decided to take 10 biopsies between and around the 2 tumor sites. All was clear!!!  It's been 18 months that the bladder has been clear. Thank you Dr. Gaston for your insight and care.   He told me he has another patient now with mel in the bladder.

Now I am hoping for next Tuesday's PET/CT to have the same good results!

Linda

Stage IV since 06

lung nodule being watched

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dafad777's picture
Replies 6
Last reply 8/19/2012 - 11:07am

my daughter is nine years old.she first told me about spot on her ear about a year ago.i really didnt think anything about it because I had no information or edacation on melanoma.I am one of those people that thought this only happens to older people.as time went by the spot started to grow bigger.not fast but slowly.more slowly that it was not that noticeable until it was the size of a pencil eraser.I said to my husband this doesnt look right it almost looked like she tryed to peirce her ear.when we took her to the doctors they looked at it and told us to go see a dermatoligist.unfurtunate getting an appointment with them takes a while.had to wait four months to get in.one day my daughter said look mommy i took a piece of that black thing off my ear.I said to her leave it alone until the dr. looks at it.now i know that its called ulceration.when we saw the dermatoligist she set us up with plastic surgeon to remove the lesion.the pathology report came back melanocytic tumor of uncertain malignant potential.then under comments it said it had caracteristics which has been termed pigmented epithelioid melanocytoma with overlap with melanophagic/animal-type melanoma.after the report was looked at by three different dermapatholigist they recomended she go back and have a wider margin removed 5mm.she had that surgery done right before christmas.that came back with margins free of lesion.she has an appt. to go see the melanoma specilist feb 22.Has anyone heard of this type in children what other treatments will she have.will they do a slnb?

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JerryfromFauq's picture
Replies 2
Last reply 2/14/2011 - 7:22am
Replies by: jim Breitfeller, moi

http://www.peerview-institute.org/news/content.nsf/PaperFrameSet?OpenFor...

C-kit and Melanoma articles:

Many interesting articles here.   I started the Imatinib in March 2008 and have been essentially stable for almost three years now.  I have a friend whose tumors went away on the Dasatinib.  In:   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2831053/?tool=pubmed
A very detailed article.  One interesting item stated is: "While other KIT inhibitors such as dasatinib appear to have better penetration of the blood-brain barrier (Porkka et al., 2008), their efficacy of treating manifest disease in the brain needs to be demonstrated."

 

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

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Anonymous's picture
Anonymous
Replies 0

Thought I would share some information with all of you that might be helpful.  Emory Winship Cancer institute is providing free information to patients and their caregivers on Feb 26th.  To learn more, click on: https://winshipcancer.emory.edu/events/WinshipContentPage.aspx?nd=821&ei...

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elefk's picture
Replies 14
Last reply 2/13/2011 - 8:40pm

I spoke to someone tonight who is NED after taking a concentrated regimen of Xango mangosteen juice, one bottle a day for 21 days along with one gallon of distilled water, after all other treaments had failed for stage four melanoma. Any thoughts?

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KatyWI's picture
Replies 22
Last reply 2/14/2011 - 3:54am

We can never get enough good news around here, so I am doing my part and sharing...I got my pathology back from my craniotomy today.  This was a site that had been treated with cyberknife, but it had grown substantially and had to be removed.  The pathologist looked at two different slices of tissue and concluded that this was necrotic tissue and radiation-induced change.  The words "no evidence of melanoma cells" are actually on the path report in black and white.  DING DONG, THE WITCH IS DEAD!  Between the cyberknife and the ipilimumab, treatment appears to be working for me.  On top of it, the other lesions treated with cyberknife in November aren't even showing up on my post-surgery MRI.  I'm so grateful, humbled, and overjoyed!

I have my 12-week ipi scans on Thursday.  I am hoping for good news in the body to go with the good news in the brain!

KatyWI

Just keep going!

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Jan in OC's picture
Replies 2
Last reply 2/8/2011 - 2:51am

After wearing am "immobilizer" on his arm all weekend, my husband got a bad rash and blisters wherever the sling rubbed.  Don't know if this is an IPI reaction (had first infusion on 1/28) or pain meds or just plain sensitive skin?  Is rash and blistering normal for IPI?  what can he take to help?   The OTC benadryl doesn't seem to be working.  

We saw the orthopedic doc this morning and they put a larger (better) brace on his arm.  The doc wants to wait for 3 weeks until the swelling goes down to decide on surgery due to risk of infection, lymphadema, etc.  In the meantime, he thought there was no reason to delay the MRI and brain radiation, if he can lay still for it.  I have not heard from the RadOnc today, have a call into them.  

One day at a time.....

Jan

laughter is the best medicine

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Terra's picture
Replies 6
Last reply 2/8/2011 - 10:55am

Hi, we have an appointment this week with our oncologist and would like to dicsuss systemic treatments. 

 

My husband is BRAF negative so I am assuming that ipi is the only one - does anyone know of the others?

He had a lung nodule removed in June '10 and a lung node removed in January '11 -we will be having scans soon but I really want to be ready to discuss all and any options with her (most recent scans before surgery showed no other cancer although we have been watching some suspicious spots they have not changed and we don't what they are).

 

Thank so much in advance

Terra

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