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.

Expand/ Collapse Topic
 
Replies By
View Topic
Ali's picture
Replies 9
Last reply 2/14/2011 - 6:47pm
Replies by: Vermont_Donna, Ali, TAC, molly, lhaley

I spent a lot of time on this website almost 4 years ago, and appreciated everything I learned.  I thought I knew a lot, but right now I don't even know what stage I am concidered, and what my treatment options will be now.

I was a IIIb, 2.5, ulcerated, three positive lymph nodes.  Interferon tolerated for 9 months.  No problems until this week I had them take off a weird wart looking nodule that came from no where and they called back friday saying it was a metastasis from my origanal melanoma.  It was on the opposite side of my knee, maybe 6 inces away.  I only talked to the dermatologist, and not for long, so I have been going crazy all weekend.  I'm sure I will talk to my oncologist this week, but what am I looking at here?

Is this concidered a satellite lesion?  Would they bump my stage up to IIIc because I had positive lymph nodes (although it was micrometastisis there) and a satellite?  What treatments are appropriate, or could they say it won't be treated?  They wouldn't do interferon again would they?  The derm. mentioned radiation, thoughts?

I just had my last scans in September and because it was my 3 year mark they said I didn't need anymore and they did not expect it come back if it hadn't already.  Wow, I just wasn't prepared for this.  Any insight much appreciated. 

Login or register to post replies.

PeterO's picture
Replies 1
Last reply 2/14/2011 - 3:46pm
Replies by: Tim--MRF

It appears ipi may be at the same crossroads as Avastin vis-a-vis the FDA. What's the latest from MRF on where things may end up with ipi?

http://www.cancernetwork.com/multiple-myeloma/content/article/10165/1703375 

www.theogler.blogspot.com

Login or register to post replies.

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 

Login or register to post replies.

EddieM's picture
Replies 3
Last reply 2/14/2011 - 9:45am
Replies by: Carmon in NM, TAC, Anonymous

I have a friend with stage 4 melanoma. Her disease isnt my story to tell, so I wont go into detail about that. But apart from just being here for her when she needs to talk what practical things could I be doing? What have you found helpful? She doesn't like to ask for anything. I know she gets tired and at times has some mobility problems. Maybe there are some things I havent thought of which is why Im asking for people with experience.

Login or register to post replies.

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.

Login or register to post replies.

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.

 

 

 

 

 

 

Login or register to post replies.

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!

Login or register to post replies.

carol b's picture
Replies 8
Last reply 2/13/2011 - 10:08pm

i was wandering if anyone has any good anti depression drug. something that makes you happy...im on clanasapam 1 mg and it aint working and all it does it make me sleepy. i want to know are there any happy pills out there??

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

Login or register to post replies.

mimi0201's picture
Replies 2
Last reply 2/13/2011 - 9:51pm
Replies by: Anonymous, Jerry from Cape Cod

     Could someone help clarify the process of obtaining IPI?  What does "compassionate use" mean to us?  FDA approval is going to be prolonged once again according to our oncologist, another 3-4 months, he believes.  I've found a compasionate use trial, but one of it's criteria is that you must not be eligilbe for any other IPI trial.  Can any oncologist get it for compassionate use? I'm confused, the clock is ticking and meanwhile we have disease progression.

Login or register to post replies.

Hi all,

Just wondering if anyone has experienced pain in/around tumour sites as th tumours are shrinking?

My husband is on Mek/PI3k trial that we know has worked ( over 15% shrinkage so far). He recently had to stop taking the drugs so a side effect could clear up and when he started back on the drugs about a week into treatment he started to get aches and pain in the areas the cancer has invaded.

This happened when he first started the drugs months ago and then gradually tapered off as everything shrunk or stopped growing.

Part of us thinks it's all good, the part of us is of course scared.... but i thought i'd reach out and see if anyone else had similar experiences?

 

thanks,

Em

Login or register to post replies.

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?

Login or register to post replies.

Rick from NC's picture
Replies 9
Last reply 2/13/2011 - 8:03pm
Replies by: ellen - dads daughter, JoanR, Anonymous, michelleg

Is anyone attending the UNC Melanoma Day program in Chapel Hill on Feb 23?

Login or register to post replies.

Jan in OC's picture
Replies 8
Last reply 2/13/2011 - 6:35pm
Replies by: Jan in OC, Anonymous, KatyWI, Rocco

Sooo....when my husband broke his humerus bone in his right shoulder, the ER put an "immobilizer" on him.  Everywhere the elastic touched his skin, he broke out with nasty rash and hugh blisters!  Our PCP and Onc consulted and finally decided that the IPI infusion "assisted" his body's severe contact allergic reaction.  Unfortunately, they had to give him steroids, which the ONC said would decrease the effectiveness of the IPI :(  

Doc said the steroids will make him grouchy.  "too late, he's already there"!!!  I have been wearing my "nurse jackie uniform" all week. 

We go to the Orthopedic doc on Monday to check his arm swelling (lymphadema is not helping)!  On Wednesday, we go to UCLA for his second IPI infusion. RadOnc called me today and scheduled his brain MRI and mask simulation on Wed, 2/23, then SRS can be scheduled (maybe the week after, can't wait). I hope there is still only one small tumor.  In between all of that, we will be getting treatment for the blistering and broken arm.  Keeps us busy and out of trouble!

Took the paperwork to the lawyer this morning for our bankruptcy and will have to move somewhere new by spring, probably out of state because SoCal is just too expensive to live on our reduced income.  Damn bank won't give an inch.  Gotta get packed with help from the one armed man!   Will have to find a place to live (rent), new docs and treatment close to wherever we go, so many things to worry about.  Just trying to think of it as a fresh start. yeah.....

What a freaking crazy time we are having!!

Jan, wife to Dirk

laughter is the best medicine

Login or register to post replies.

Dawn's picture
Replies 13
Last reply 2/12/2011 - 10:41pm

My nine year old daughter just completed her 3rd infusion of ipi.  She was diagnosed in Nov 2010 with Melanoma of the CNS witha primary in her brain....very rare for a child.  She is tolerating it well.  Itches tremendously at times, but otherwise we are not seeing many other problems.  Clinically, she is doing well.  This is the best she has felt since she was diagnosed.  Prior to ipi, she went through WBR and was on temodar.  We were told that she is the only child on this right now...we had to work with the doc, the pharmaceutical company, and the FDA for this to go through.   My question is,  are there any other children out there that anyone knows about that are on ipi?  I would like to connect with them if possible.  Thanks Dawn

Login or register to post replies.

dawn dion's picture
Replies 5
Last reply 2/12/2011 - 7:30pm
Replies by: lhaley, carol b, Anonymous, KatyWI

Wow talking about this stuff seems so Weird!!!   Like I should be talking about someone else.  In Jan 2010 I went to my Dr. and asked to have this spot removed from my  left arm.  It had been there forever and for whatever reason it was starting to make me nervous.   She told me to wait six months.  Well 4 1/2 months into the six  it ulcerated.  I knew this couldn't be good.    Had it removed told stage 3 melenoma had a trace amount in the sentinel node and had the remaining lymph nodes under my left arm removed.   Told 30% chance it would ever return and went on ipiluminad (sp)   The whole time I was doing the drug I was told this is what you want to be doing - great  results with this drug.  Three months after I started the trial guess what I am now Stage IV.      I have two beautiful girls and I am scared out of my mind. 

 My Dr. called me the other night and said great news you tested positive for the gene change so now we can move on to the next trial.   Does anyone out there have anything good to say about this.  Because right now I am feeling like a guinea pig.   I read melenoma girls story and I swear it was like reading my own, with the exception of being told that interferon would do me no good and to go with the trial - I feel like I have been failed so many times by my Drs that I don't know what to do or think next. 

I know there are sooooo many of you out there in the same boat - but I feel really alone and scared beyond anything I have ever felt before - Every time I look at my girls all I can do is cry because I feel like I am failing my family.   I was recently told to get off my a** and stop feeling sorry for myself.  In time i know I will but for right now I am feeling very sad in Florida.

 

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

Login or register to post replies.

Pages