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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Tim--MRF's picture
Replies 2
Last reply 11/28/2010 - 9:58pm
Replies by: LynnLuc, debbieVA

On this Thanksgiving Day (for those of us in the US) we try to pause and give thanks.  In that spirit, I want to say a heartfelt "thank you" to everyone on this board.  This has been a challenging year in many ways--we have lost far too many wonderful warriors.  But we are all richer for having known them, even those we only met through the magic of electronics.  And I know that they, and countless thousands of others, lived longer and better because of the information and support they received through this community. 

Many, many of you spend hours every week replying to posts.  You offer your home email address and home number so complete strangers can reach you for more one-on-one support.  You reach out through the internet to inquire about people when they don't post in a while.

The care and compassion of people on this site are astounding, as is the wealth of knowledge and insight you offer.

I have been thinking a lot the past couple of days about Jenna, and Knute, and so many others.  Though these are sad thoughts--to know that they were taken by this nasty cancer--I cannot help but be greatful for the lessons of courage, faith, and hope we all learned from them along the journey. 

I know that holidays can be challenging, particularly for families who recently lost a loved one.  But I hope, too, that on this Thanksgiving Day we can all find reasons for gratitude in the relationships, memories, and stories we have gathered along the way.

Tim--MRF

 

 

 

 

 

 

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Dynasysman's picture
Replies 3
Last reply 11/25/2010 - 7:20pm
Replies by: Brandi, Dynasysman, Pekoe

I am MUP, originally classified N1b M0, awaiting left posterior neck dissection.  In preparation for surgery, we conducted a PET-CT scan (clear) and a brain MRI (see below).  Surgery is scheduled for December 7.

When my surgeon left a message saying he needed to discuss my MRI with me, I immediately started thinking, "brain mets, oh my G-d."  When we spoke, though, he said that the MRI had revealed an aneurysm at my M1 terminus.

I have been having a funny feeling for month -- less balance, losing words, etc. -- but never thought of an aneurysm.  However, symptoms have been getting worse...it could have blown at any time.  And the impact of a ruptured aneurysm really stink -- 10-15% death on the way to the hospital, up to 50% at 30 days.  Most survivors lose a bunch of brain function.

So now we will (hopefully) patch the aneurysm while doing the neck dissection.  I still don't know that my status will not get worse during surgery (the same MRI a second possible positive lymph node in another part of the left posterior triangle.)  But whatever comes, I will probably live longer and better because we found the aneurysm now.

You never know when life gives you blessings, and some come in the most bizarre ways...

Happy Thanksgiving, all.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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himynameiskevin's picture
Replies 29
Last reply 12/2/2010 - 6:38pm

Sorry for my absence. Been thinking about you all a lot. It's been a pretty busy month... a lot has happened. I'm not sure where I left off but here's an update...

Well,exactly one month ago I had my CT scan and two days later I found out that IL-2 was unfortunately not my magic bullet. But, I like to think that since it didn't work on me, I've raised the odds for it working on someone else. So that's good. They did say I may have partially responded due to the slight softness and shrinking I felt on my chest and back, but those ones don't really matter and it's not enough to call for another round. So.. since then...

During that appointment, my doctor had mentioned "adoptive cell therapy" clinical trials, a therapy they offer in Bethesda MD at the National Institute of Health to qualified patients, it was actually the first thing he mentioned months ago but I didn't qualify because my brain lesion, but since then, that's been cleared up, and with 3 months of clear brain MRI (which they require), I might be a good candidate. So him and I made some calls, set up an appointment, and I flew to Washington DC. I got to the NIH, went through security, checked in, got my badge, did all my necessary blood work, urinalysis, chest scan, EKG, all the loops and hoops over the course of the day, and finally met with my possible team of doctors. I was supposed to go home and they'd call me in a week to see if they'd even accept me, but, miraculously, they accepted me then and there, and asked me to stay two extra nights to do a surgery and remove the mass from my back. The next day they wheeled me to the OR, put me to sleep, and I woke up feeling great having that thing off my back. Finally.

By the way, a brief summary of adoptive cell therapy: They remove a tumor or piece of a tumor to extract some natural t-killer cells from it. Then in a lab they see if they can harvest the cells. Usually they can, sometimes they can't. If they see they're growing, they continue to harvest, possibly for many weeks, until they have about 6 billion of them. Then there's a three week procedure where they give them back to you. And then you wait, hope and pray that these t-cells are abundant enough, strong enough and smart enough to recognize the bad stuff and go to town on it.

So back to the update. Less than two weeks after the surgery they called me to tell me that cells were growing. Big relief because if they don't grow.. well then there's no cells. They said they'd call when there were enough for me to come back. And again, miraculously, I got a call two days later saying that my cells are growing phenomely fast (faster than they'd ever seen.) and that looks like I'll be starting the therapy a lot sooner then expected. So I flew back out the next day for prep work, another brain MRI an abdomen MRI and a CT scan of my chest along with more blood work and a long morning of phresis where they took a bunch of white blood cells for 4 hours. Then I flew home with an appointment to come back this Sunday/Monday and start my 3 week therapy on Tuesday.

Tuesday, unfortunately will consist of me starting a week of traditional chemo, not to target the tumors but to kill my immune system, they want it gone so it doesn't effect or "water down" my new immune system.  Then on the second Tuesday, they give me my cells back with a week of IL-2, just like IL-2, one bag every 8 hours as long as tolerable. Then the third week is recovery week, getting me back to normal so hopefully I can be home before Christmas. Then as I said, I just wait hope and pray until they call me back and scan me.

So that's that. It's been a long and busy month.  

I'll have to browse the past posts and see how you all are doing, but I Hope everyone is doing good, staying positive and enjoying the day off today, hopefully with some good company.

Talk to you soon. -Kevin

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Melanoma Mom's picture
Replies 2
Last reply 11/25/2010 - 1:11pm
Replies by: Becky, Linda/Kentucky

Today we celebrate one week of NED for our 14 year old son. 

Wishing you all a beautiful day full of love, merriment and pie!

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Rebecca and Bob's picture
Replies 2
Last reply 11/25/2010 - 9:00am
Replies by: lhaley, King

My husband went through so many tests the past two days. Endoscopy, colonoscopy and additional CTSCAN. This was for his abdominal cramping, stomach pains and gas. Everything came back clear. The only test left that they can do is the camera in a capsule to further look at his small intestine. They could not do that one unless they did the other test first. Something about insurance no covering it and that this is the normal process for investigating stomach issues.   Although after all these test the doctor did say it appeared he had Irritable bowel syndrome and reflux, probably from stress. He did put him on Prilosec and he seems to feel better, so that's good news at least he feels better and relieved. We may still pursue the capsule test, but another thing the doctor said was if my husband had another intussception or any blockage that he would have never been able to drink all the fluid for the colonoscopy that he would have thrown up.

i think we both feel better after all these tests, it's scary when you have stomach problems and you have had mets to your small intestine before. We will probably still do the capsule camera test because at this point what's one more test going to hurt.

Anyway, I hope everyone has a great Thanksgiving and enjoys the day.

Believe

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EmilyandMike's picture
Replies 6
Last reply 11/27/2010 - 12:28pm

I just saw this article on my Google alert.  Looks like they are getting closer to figuring out why people build resistance to BRAF inhibitors.

http://www.forexpros.com/news/general-news/studies-show-how-skin-cancer-evades-promising-drug-176820

Also - I have been reading a wonderful new book on the history of cancer called "The Emperor of All Maladies".  Written by an oncologist, it reads like a detective novel and has really opened my eyes.  It is not a book that talks about melanoma, but I still highly recommend it because it is very relevant to any cancer. Read the reviews for a good overview of the book:  http://www.amazon.com/Emperor-All-Maladies-Biography-Cancer/dp/1439107955

All my best to you

Emily - wife of Mike, Stage 3a

www.emandmichael.com

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Sharyn's picture
Replies 4
Last reply 11/24/2010 - 6:40pm

Hello everyone,

I'm sure you all remember Janet from the UK who recently underwent WBR to treat a single brain met. I believe she also had it in her stomach. Well, I received a personal email from her friend Cynthia, saying that Janet had been admitted in a hospice facility. Tonight I received this second email from Cynthia:

Hello Sharyn
It is with sadness that I have to tell you that Janet died today peacefully in the hospice with her family beside her.
She was a very brave lady who loved life and fought the cancer to the end, sadly the last treatment did not have the desired outcome for her.
I hope you continue to make good progress and so glad it worked for you.
I think Janet felt if she tried some thing rather than letting things happen then she was in control.
Best wishes
Cynthia  

I just thought you would all want to know.

Hugs

Sharyn, Stage IV
 

 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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naty's picture
Replies 3
Last reply 11/23/2010 - 10:07pm
Replies by: naty, Jackie W

I'm just wondering how do you fight insurance to get to major cancer centers such as MD Anderson?  We live in michigan, my father has medicare thru an insurance company here.  And FINALLY after 3 weeks of daily calls to the insurance, his oncologist, and MDA we have a signed contract JUST for a 1 day consult.  Is this typical to have to fight so HARD against the insurance companies?  I was told originally by MDA that we would be there for 3-5 days for a consult, but now we will be there for a day.

Sorry I'm trying to learn the ropes and we are new to this "game".  Any information and tips would be helpful!!   dad has stage IV (brain, liver, lung) and just finished brain radiation last monday.  

So I guess my questions are 

1.  How to deal with insurance (or is it medicare that is a problem?) or is there an insurance that you may have that was ok with MDA

 

2.  While at MDA for the consult will they discuss all his possible options in regards to clinical trials he qualifies for or do we need to know what he may qualify for (via clinicaltrials.gov) ?

3.   I may be adding more! thanks

Melissa 

 

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churchwelldana's picture
Replies 4
Last reply 11/26/2010 - 9:52am

I'm currently stage 3a, about to have surgery to remove lymph nodes. After that I will start Interferon. I live in Memphis and there are no clinical trials available here. There is one available at Vanderbilt in Nashville (4 hour drive). It involves using ipilimumab, but it is a double blind study. I'm just wondering if that would even be worth my time. I know most all of this is a wait and see kind of thing, but I'm only 32 and would like to do whatever I can to reduce my chances of it coming back. The good thing is that my PET/CT scans were clear and that I only had one sentinel node with a micrometastases.

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alicia's picture
Replies 7
Last reply 12/5/2010 - 12:20pm
Replies by: Amy Busby, Lori C, JJO, Carmon in NM, Jydnew, jag, Anonymous

I've recently been experiencing headaches that cuase extreme nausea. Sounds like migraines to me but I've never had this problem and I'm wondering if this is something I should call my dr about. I'm not due to see her until April 2011. I'm just concerned about brain mets And i haven't had an MRI of the brain since I was initially diagnosed in sep 2006. Did any of you with brain mets have symptoms before they were found. My once only does ct scans of my chest once a year and I worry something could be missed elsewhere in my body. Thanks any input would be helpful.

Alicia B age 28 with 2 kids
Stage 3 melanoma 2006
2nd primary stage1 Mel 2010

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lalbers's picture
Replies 6
Last reply 11/24/2010 - 12:13am
Replies by: Cynthia C, lalbers, JuleFL, jag, Fen

I'm new here to this forum, and hopefully can have someone to lean on.  Dad had skin melanoma 5 years ago- had surgery, clean margins, sentinal lymph node biopsies- everything clean.  Pet/MRI/ oncologist every year.  A few months ago, dad developed respiratory problems, diagnosed with seasonal allergies.  Wrong.  Chest x-ray showed several large tumors by his heart and lungs.  Biopsy confirmed.  It's back.  He lives several states away.  They want to sell their house and move closer to me and hubs, but with the market the way it is, they can't sell, and can't move down here till it sells.  I'm a nurse, and know his prognosis, even though he tries to shield me and my brother from it- ie, they won't get copies of diagnostics, and read them to us, even though I know they have them- they say they don't.  They've already sold off some valuables they had so that mom can have enough money to move- but money really isn't an issue- she can live with us.  The thing that's killing me, is that as a nurse, I'm flexible in working, I've already told my work I may have to leave, and that's ok- I can get a travel position up there, and spend time with them- a few months, a few weeks....... Dad refuses to let me and my brother come up.  He says he wants to die there with mom, and we can come up after he's dead.  We've never been really close, although they did spend a summer, and several vacations with us in the last few years- and I talk to mom almost every day.  He's only opting for Temozolomide, even though he is eligible for severala clinical trials- but mom would have to drive him to them, and she can't drive that much.  I offered to come up there and drive them, and was turned down.  I hate this feeling so helpless.......

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BarbieGirl's picture
Replies 5
Last reply 11/23/2010 - 11:23am
Replies by: DonW, bcl, jag, King, lhaley

I'm pretty sure he said 2001 was the last time he was NED!!  Yay Allen!!  He can't get registered here for some reason so he can post.

Please keep those good thoughts and prayers directed to Allen and his wife, who's currently doing therapy for her back.

~Lisa~ 

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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EricNJill's picture
Replies 17
Last reply 11/28/2010 - 10:09pm

We called in Hospice to get help with Eric.  They said that they would care for him during the 2 month waiting period before Eric can get into a Clinical Trial for having Brain Mets.  He had a Craniotomy and he's having Gamma Knife on 11/29.  They have been a huge help already, but our problem is...

Eric's Oncologist said that no clinical trial will accept Eric if he has been under Hospice Care.  Hospice said they would step out and come back in when needed but the Oncologist is afraid that the clinical trials won't take him.  How would they even know?

I'd like to keep Hospice because it's a huge help.

JillNEric in OH

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LynnLuc's picture
Replies 6
Last reply 11/29/2010 - 11:09pm

I am stage 4 NED...I was told I would always be considered stage 4 and would not regress to lesser stage...is that true- even though I have no disease at this point? I was told it's the distance it travels and not how "bad" you are...Just wondering...anyone know?? 

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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dian in spokane's picture
Replies 4
Last reply 11/25/2010 - 12:08pm

Hey Kevin,

If you are reading..we'd love an update. I am sure I am not the only one wondering how things are going with you.

 

dian

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