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
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.

JoanR's picture
Replies 4
Last reply 2/17/2011 - 8:56am
Replies by: Sharyn, Anonymous, Janner

If you are reading this Sharyn, please know we are all thinking about you and hoping your surgery went well.   If Jim is reading this, perhaps you can let us know about Sharyn's condition, and also the address of the hospital where Sharyn is if in fact she will have a long stay..Cheers Joan

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.

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.

I'll hang around in the melanoma section of chat for a bit in case you want to talk.

Login or register to post replies.

lost's picture
Replies 11
Last reply 2/15/2011 - 3:14pm

I was just recently diagnosed...literally hasn't been but a couple of weeks. They say I have stage iv with tumors on my colon, lung, spine, spinal cord, and on my brain. So far I haven't really been given anything towards my next step, just that it will most likely involve surgery, radiation, and chemo.  I'm so in the dark about this and how to deal with this for myself and my family and kids. Can anyone point me in a direction?

Login or register to post replies.

EricNJill's picture
Replies 31
Last reply 5/17/2012 - 10:21am

I can't even explain to you in words how I am feeling tonight.  After so many FAILED treatments in the last two years, we've finally found one that looks like it is working.  Nothing even stopped progression before.  When we found out the cancer spread to Eric's brain on November 2nd, I was devastated.  It was one week before we were supposed to start a BRAF treatment in Nashville.  Well God had another plan in store for us...we got the last opening in a BRAF/MEK trial in Nashville and we feel so blessed by these changes in just 2 WEEKS! 

I hope that no one is offended by this graphic pictures, but I had to share...

 

 

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.

mkummerle's picture
Replies 6
Last reply 2/11/2011 - 11:01pm

Diagnosed Stage IV March '09.  Bone Mets to spine several tumors throughout body and lyphnodes.   Tried Interferon for nine months, GMC-SF for four months, Interleukin II,  Temodar and Ipilimamub.  Negative for BRAF.  All have been failed treatments.  Next line of therapy will be standard Chemo with Carboplatin and Taxol.  I'm  feeling like nothings going to get me a response.  Feeling like it's not worth it to start next treatment only to be set up for failure again.  I'm about ready to just let it take its course.  Just venting, thats what this board is for!   Thanks all!

Login or register to post replies.

dafad777's picture
Replies 10
Last reply 2/12/2011 - 2:57pm

I was wondering when i go see the melanoma specilist if anyone knows if he would recomend slnb or should i say something about it.only because of what i've read said when they go back in for re-incision sometimes they do the slnb.no one did one on my daughter and they went back in and took 5mm more off her ear.and she has not had an xray,a cat scan,pet scan nothing.i think she should have already had something.her first surgery was oct 26th.2010.

Login or register to post replies.

Melanoma Mom's picture
Replies 8
Last reply 2/12/2011 - 7:29am

I think we should all E-mail this "doctor" and set him straight, as I have already done. His information on Melanoma is so incorrect and ridiculous, it made me want to scream and laugh at the same time! What a fool. He actually states that using sunscreen has increased the cases of melanoma!

http://www.rocklintoday.com/news/templates/chiropractic.asp?articleid=96...

 

Join me in encouraging him to either remove or correct his article.

drdozier@surewest.net

Login or register to post replies.

Angela C's picture
Replies 4
Last reply 2/11/2011 - 7:16pm

Hey everyone.

I just had my first cycle of IL2 in January. My second week in the hospital was the week of the 24th. After each round, I have been experiencing a strange sensation in my head. I would describe it as a medicine head feeling. I just feel kind if out if it. I am kind of light headed and dizzy. It us a hard sensation to describe.

I had this after the first week and the doctors seemed surprised by it and not sure what to make of it. I was originally attributing it to the anti anxiety meds I had taken, but those have been out of my system for a week and a half now and this feeling is still here.

I gave a check up with the doctor on Turs and we'll definitely be talking about it. I just wondered if anyone else had experienced something similar.

I can't help but have the thought cross my mind that I could have a brain metastasis causing these symptoms. But, I'm trying not to freak out.

Anybody have a similar experience??

Be kind, for everyone is fighting a great battle. -Plato

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.

mimi0201's picture
Replies 5
Last reply 5/27/2013 - 8:43pm
Replies by: kev1h, mimi0201, lhaley, Anonymous, skysar

     Could anyone here  provide feedback regarding the TIL trials at the NIH?  Thanks.

Login or register to post replies.

LHogg's picture
Replies 12
Last reply 2/14/2011 - 7:41pm
Replies by: paul, dawn dion, Anonymous, jag, glewis923, NicOz, Bonnie Lea, Kim K

Adelphi is an independent market research company specialising in the pharmaceutical industry. We are conducting international research to gain insight into the impact of living with stage 3/4 melanoma, on patient quality of life around the world

 
The research aims to provide patients with the opportunity to discuss your melanoma experiences to date and your perceptions of the melanoma treatments you have undergone, identifying key unmet needs
 
Findings from this research can then be used for the further development of future melanoma therapies
 
Patients are needed for a 90 minute discussion by telephone or in person and you will be reimbursed for your time. You will also be required to complete a small amount of ‘homework’ prior to the discussion, to take place between 17th Feb – 11th March
 
If you have been diagnosed with stage 3/4 melanoma and are interested in participating please see country specific contact details below:
 
 
Germany
Karin Chwallek
+49 (0)69 254262512   
 
 
France
Ref: ZR11022
+33 (0)3 20 93 31 47 
 
 
Sydney, Australia
0414884924
 
 

Login or register to post replies.

Pages