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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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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Anonymous's picture
Anonymous
Replies 5
Last reply 2/14/2011 - 12:09pm

 LOCATION:               BachmanLake Park                                    Pavilion Area                                    3500 Northwest Highway                                    Dallas, TX FORMAT:                  3.3 Mile Leisurely Walk or Run TIME:                          8:00am – Sign-In                                    9:00am – Opening Ceremony                                    9:20am – Warm-Up                                    9:30am – Walk Begins 

FEE:                            No fee to participate.

                                    Each Walker encouraged to raise at least $50.

 

REGISTRATION:                              Registrations received by April 30th will ensure a free t-shirt.

 

COMPLETED PLEDGE SHEET, WAIVER, & DONATIONS:  Due the Day of the Event

 

 

TO REGISTER

 

         Visit:            www.AIMatMelanoma.org

         Click-on:    Participate in a Fundraiser

         Click-on:    AIM for a CURE Melanoma Walk LOGO

         Click-on:    Dallas, TX

 

 

 

 

For additional information, please contact

Jean Schlipmann – Jean@AIMatMelanoma.org 

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Replies by: Fen, KellieSue

Hey all, long time...So I have gotten to my 1 yr anniversary down...and after 2 Pet/CT's I keep getting asked if I have ashma!? So, since 1 month interferon, I have fluid in my lungs and airway constriction.  Anyone else get this?  Did it stay? Is this one of those lifetime side effects that I have been trying to avoid?

And then there is my thyroid.  So the last scan they found something on my thyroid. They (Dr.s) keep telling me they think it is nothing as I go on to the next test.  I have found one article about mel patient who got it in her thyroid...but anyone have thyroid problems after all their treatment?

I am getting a little frustrated. I keep trying to get my body to move on and start getting/feeling healthy. But it seems everytime I get going I get slammed back. And I can't decide how much do I push through and how much a give in.  Any advice is welcome!

Sarah

Stage 3 Mel, NED 1yr

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beatricefromPARIS's picture
Replies 3
Last reply 2/14/2011 - 4:21am
Replies by: Anonymous, y'all Come In, JerryfromFauq

Hi everyone

Recent scans show peritoneal mets (among other) are progressing. Brain still clear.

So Interferon (which kept me stable for a while) has been stopped.

If all goes well, I should start IPI in 2 weeks. I will let you know how it feels!

In 2 years at stage IV, I have had 3 chemos, one bio therapy and interferon.

Options are narrowing down! This one has to work. Touch on wood.

 

 

 

 

 

 

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Lisa - Aust's picture
Replies 2
Last reply 2/12/2011 - 1:40am
Replies by: Lisa - Aust, EricNJill

G'Day Everyone,

http://www.melanomaroadtripusa.com/blog/

Thought some of you may be interested in this. For those of you in the states, keep your eyes peeled for Clint and Jay! My partner Craig and myself have been lucky enough to get to know Clint over the pas tfew years and he really is an amazing person. He recently won 'Young West Australian of the year' which put him in the running for 'Young Australian of the year'. Unfortunately he was pipped at the post by a girl who sailed her boat around Australia. If you ask me, the difference that Clint has made to so many peoples lives here in WA made him the most deserving of the award, but it wasnt to be. Hopefully a few of you will check out their site, follow their journey, and may be lucky enough to come across them.

All the best

Lisa - Aust 

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