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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DeniseK's picture
Replies 4
Last reply 12/2/2012 - 7:55am

Hello Everyone

It's amazing how things change from day to day.  I thought I had a perfect game plan.  I was going on Z and hoping for the best.  I was thinking maybe I'll be one of those lucky ones that I could live years on it.  Well I'm still hopeful but I found a trial that is randomized Zelboraf alone VS Zelboraf with Mek inhibitor.  I figure well I was going to do the Z anyway.  The way this one works is 1-28 days of Z then 1-21 days of inhibitor or Placebo.  Seems like I would benefit either way.  Here's the link to the trial http://clinicaltrials.gov/ct2/show/study/NCT01689519?recr=Recruiting&cond=melanoma&state1=NA%3AUS%3ACA&state2=NA%3AUS%3ANV&age=1&rank=11&show_locs=Y#locn

My question is, if anyone knows, is when do they typically start recruiting.  They are recruiting in Encinitas, CA but not in San Francisco where I would need to go or anywhere else for that matter.  I sent an email yesterday asking and called today and left a message but haven't heard.  I'm supposed to be starting Z on Monday and I want to know if I should hold off so I can qualify for this trial, but if it takes a couple months then I probably won't have the time. 

Sorry for all my questions, but I'm in a time crunch now and it doesn't look like I'm going to get any answers today.

Thanks for ALL your help!!

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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doriniel's picture
Replies 9
Last reply 12/2/2012 - 6:18am
Replies by: Anonymous, shelbug66, doriniel, Gene_S, awillett1991, POW

Melanoma now resistant to zelboraf after 14 months. What do I do next. Oncologist thinks I should do yervoy while my turmor load is small. I'm thinking about trying to join a clinical trial. I live in idaho so would have to travel to be involved in a trail. I would appreciate anyones thoughts.

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sharmon's picture
Replies 14
Last reply 12/1/2012 - 7:33pm

I can't write and explain like some of you can.  I read here daily and feel a connection here that I don't feel with family and friends.  Brent is my life and we are going through some bad stuff right now.  His pain is a 10 and the doctors here are going to do a radio frequency ablation to the nerve that is causing the pain.

I asked earlier if anyone has had any success with this kind of nerve block and not one person responded so I guess i am on my own with this proceedure as far as what to expect or watch out for.  . 

It is hard to reach out for comfort and when I am in the heat of the battle so to speak with no road map it is downright terror.  Nights in the hopsital alone are the worst.

He is fighting with all he has right now and the next infusion of the drug is at week from tomorrow.  He has to make that appointment for the infusion.

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dian in spokane's picture
Replies 2
Last reply 12/1/2012 - 9:17am
Replies by: DonW, vivian

 

Well, I know some of you will bre  curious about my treatment, so I'll tell you all about it now. Last week I went in for radiation 'set up', which mostly just consisted of some measurements being taken while I was lying flat on a metal table, just like the table any of you might have been on for a ct scan or mri. A CT scan was used during this where they tracked the movement of the nodule in my lung while they were doing the measurements. I also got three tiny tattoos, used for targeting purposes, one on each side of my chest and one right in the center.
 
Yesterday was my first treatment, it was easy and painless except for the problems I have lying on my back. BUT, since I was allowed to eat a regular breakfast, I took a pain pill, and followed that up with an anti anxiety pill on my way there. So that helped me relax enough that the back didn't start hurting till right at the end.
 
Today, I was, of course, on the same kind of table, but the machinery was quite different. THIS is the actual machine they used: http://www.varian.com/us/oncology/radiation_oncology/clinac/
 
It was easily the simplest and most painless thing I've ever done to fight my melanoma, not even as stressful as a PET scan. I had to do no kind of preparation, no restrictions on my eating the day before or that morning, I just had to lie there. The machinery moved around me, and occasionally moved me..so once in a while the table was rotated, but mostly the arms of the machine moved around me.
 
The first half of the time in there was mostly scanning. they have to follow the way the tumor moves with breathing. The arms rotate around and shoot their radiation beams into you from many different directions (16 I am told) and for those who asked, there is indeed some laser involvement, but used for aiming an targeting. The radiation crew, while all this is going on, is out in another room, a big U shaped room that looks like the bridge of a spaceship, with all kinds of computers, and one with a big view of the room and me.
 
I kind of felt like I was in a space ship too. With some futuristic fullbody tricorder. just an illusion. It made robotic noises, like R2D2, and it was over right about the time my back was starting to hurt me.
 
Because this is unlike traditional radiation, the side effects can come faster and I'm told I could start having some early side effects, in terms of fatigue in the next couple of days. I did interferon back in 03/04 and can't really imagine any fatigue being worse than that, so I'm prepared. Other more serious side effects like, sore throat, skin burns, esophogitis and such could come later, but really I could just get away with minimal side effects, so that's what I am looking forward to. But I'll keep you all posted on the timetable and severity of such things
 
I have 3 treatments next week, mond/wed/fri, then one on the following monday. It will likely be 2 or 3 months before we scan again to see if this therapy is working. And hopefully it all goes without a hitch, I'll be ready for camping by april!
  
Dian

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Note that you will have to sign up for a free membership from Medscape to read the following information:

 

Here are the newly published articles in your area(s) of interest for November 30, 2012:

Skin Cancer

Accurate Identification of Melanoma Tumor Margins

 

Abstract and Introduction
Abstract

More than 8000 people die of melanoma in the USA annually. Although early detection of melanoma results in a 5-year survival of up to 90–95%, those presenting at advanced stages have dismal prognoses due to ineffective systemic therapies. In general, patients with early melanoma can be successfully treated with local surgery. However, approximately 8–20% of lentigo maligna melanomas recur, leading to frequent re-excisions, cosmetic issues and, as a result, increased medical costs. An accurate evaluation of melanoma margins is important to prevent local tumor recurrence and progression to advanced stage disease. This review will discuss the role of clinically based noninvasive tools, histology, immunohistochemistry and molecular technologies in melanoma margin assessment. 

 

https://login.medscape.com/login/sso/logout?notyou=yes&cid=med&urlCache=...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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DeniseK's picture
Replies 14
Last reply 11/30/2012 - 7:09pm

Hello everyone! I hope everyone had a great Thanksgiving. I found out Monday morning that I was BRAF positive!! Todays my birthday so I feel like i got my gift early. I've decided to start z asap. I am still going to look into trials but I feel like I need to start something. The last couple days have been pretty rough on me. I'm seriously short of breath and have been experiencing a lot of pain in my back and ribs. I think the lung tumors are growing quickly and I don't feel like I have the time to wait for getting into a trial. I meet with the onc tomorrow to go over side effects, although I feel like I understand what to expect by reading here. About how long does it take for side effects to kick in? Any advice? Do you lose all your hair? Its not like it matters but I want to be prepared as to what expect.

Thanks, Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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POW's picture
Replies 4
Last reply 11/30/2012 - 12:41pm
Replies by: Gene_S, awillett1991, Anonymous, lhaley

My brother (Stage IV with brain mets) has had many CT scans and MRIs but never a PET scan. Nobody at the VA or at Moffitt ever suggested one. Is there any particular reason to use PET vs CT vs MRI?

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cookiemom's picture
Replies 4
Last reply 11/30/2012 - 10:47am

Thinking of you and wish you the best tomorrow.

Sincerely,   Cookiemom

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Snickers60's picture
Replies 12
Last reply 11/30/2012 - 8:11am
Replies by: Tina D, Snickers60, mel123, Anonymous

The way Wayne found out he had Melly Mets was through a calcium scan for his heart.   His family drops dead from heart attacks.

Anyway, we knew he needed to follow through as soon as there was a break in the nightmare since March12, so we finally went in to haveHEART CATH after he had a small event on stress test.    The man had a 95% blockage in one artery.   The others were fine, but we almost fell out.     He went in hospital last week and had the rotor rooter and they did one stent in that artery. 

GOODNESS - that was CLOSE after fighting like Trojan's with Melly. 

Be alert to the rest of your body.....it's not always MELLY and the TREATMENTS causing the symptoms.  

BLESSINGS AND HEALTH TO ALL OF YOU !   PRAY THINGS ARE GOING AS WELL AS POSSIBLE and YOU ARE FIGHTING THE GOOD FIGHT ! 

KEEP THE FAITH !!!!!!

Nancy (devoted wife of 3 X Warrior Wayne)     

 

 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Anonymous's picture
Anonymous
Replies 0
Gene_S's picture
Replies 3
Last reply 11/29/2012 - 11:58am
Replies by: Tina D, POW, Amanda

Copied from my email

=====================

 

 

Join us for a Webinar on

Friday, November 30th

 

We are pleased to bring you another cutting edge webinar that will empower your knowledge about melanoma therapy, in particular PD1.  Antoni Ribas,  is a physician-scientist conducting laboratory and clinical research focused in malignant melanoma.  He is a brilliant researcher, and a compassionate physician.  He has earned MIF's Doctor of the Year Award for 2013 and is a MIF Scientific Board Member.

Join us on Friday, November 30th at 11:30 AM EST for this exciting slide show presented by Dr. Ribas and hear patient questions answered through the moderator, MIF President and Founder, Catherine Poole.

 

  

 

 Please send any questions you might have in advance to cpoole@melanomainternational.org.

 

Title:

PD1 Therapy Update

Date:

Friday, November 30, 2012

Time:

11:30 AM - 12:30 PM EST

 

After registering you will receive a confirmation email containing information about joining the Webinar.

 

https://melanomainternational.webex.com/mw0307l/mywebex/default.do?nomenu=true&siteurl=melanomainternational&service=6&rnd=0.9121856243506593&main_url=https%3A%2F%2Fmelanomainternational.webex.com%2Fec0606l%2Feventcenter%2Fevent%2FeventAction.do%3FtheAction%3Ddetail%26confViewID%3D1003254417%26%26%26%26siteurl%3Dmelanomainternational 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Colleen66's picture
Replies 4
Last reply 11/29/2012 - 10:43am

I got the pathology from my surface lymph node dissection surgery.   All clear margins and no detectable cancer.  I never thought I would ever be so happy to stay at stage 3A.  I am so thankful.  Next steps are ct scans and Interferon.   2 surgeries in 30 days.  Do things always move this fast?

Happy Thanksgiving everyone.

Colleen 

Live!

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wangyue365's picture
Replies 8
Last reply 11/29/2012 - 4:20am
Replies by: LynnLuc, Gene_S, Rocco, NYKaren, Linny, Anonymous, awillett1991

Hi, 

My father has stage IV melanoma. Cancer is now in his lung, liver and bone. He had two Yervoy infusion already. He has side effects such as fatigue, fever, and lost of apetite. As Christmas is coming, I am thinking of taking my dad and mom to a sun destination, such as Mexico or Dominican. But I am not sure if such a vacation is going to put any risk on my father's cancer? Or there is no effect of sun on my father's case already? 

Thanks for your advice.

Ady

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Gene_S's picture
Replies 21
Last reply 11/29/2012 - 4:07am
Replies by: LynnLuc, Anonymous, Gene_S, Colleen66, MikeWI

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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