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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justlittleoleme's picture
Replies 6
Last reply 9/28/2011 - 9:18am
Replies by: justlittleoleme, Anonymous, lhaley, mimi0201, nickmac56

My husband's surgery is Friday.  I have asked them to test the tumor for BRAF anything else we need to request?

We visited with a melanoma oncologist Monday who gave us three options for adjuvant treatment.

1) radiation 2) interferon 3) clinical trial with a)interferon b)Yervoy-depending on which group he would get into.

We will know more once the surgery is completed and the pathology results are back.

I am planning on attending the symposium in Chicago on 10/1.  I am hoping he is feeling better so I can go.  I think there is a lot I may learn.

 

Thank you Tim for this website!  I have learned so much and I feel my knowledge of melanoma is still in its infancy.  I really don't WANT to know more, but I NEED to know more.  I want my husband around for a long time!

 

barb

We don't know how strong we are until being strong is the only choice we have.

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The followig is provided by Nicole's friend Donna:
 
"Nicole comes from country Nsw and her family may not post an obituary in the major daily.  I have begun searching the local newspapers to see if they have placed an obituary in one of them.
 
The service is on Australian Friday 23 September, which I believe will occur on your Thursday.  Just to ensure I have that correct it is currently Wednesday 21 September 7:39pm here.
 
Friday 23 September 2011
10 am
Collier Trenerry
202 Yambil Street,
Griffith NSW 2680, Australia
 
Some one posted the following on Nicole’s facebook page
For those of you who can't go to Nic's service, like me, I thought you might like to know that I called the funeral home and Nic's family is accepting both flowers and also donations to Melanoma Research.
http://www.melanomaresearch.com.au/ and http://www.melanoma.org.au/ are 2 possible options.

 "
I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 7
Last reply 9/22/2011 - 10:35pm

I have been tryiing to get in contact with Jim every since I reached Colorado.  i keep getting the message that the phone number dialed is not a working number.  Tonight I searched James Chase and Denver and found the following:

http://www.legacy.com/obituaries/denverpost/obituary.aspx?n=james-donald...

In it they requested donations to the MRF.

   Jim is one of the Colorado MPIP/MRF members that came out of his way to visit me in the Hospital after my accident last year.  He was a good man and tried to fight this fight and help others.

 
Blank
Blank

Obituary or Memoriam
 
JAMES DONALD CHASE
 

Jim, 58, passed away July 3, 2011. Beloved husband of Jan; father of Christina Jane and Kathryn Mabis; son of Jane Chase; and brother of Barbara (James) Rybacki and J. Givin (Nancy) Chase. He was preceded in death by his father, A. Mabis Chase. Jim graduated from The Hill School in Pottstown, PA as did his father and his brother. His daughter, Christina, will graduate from The Hill School in 2012. He received his BS & MBA in business from the University of Denver, and a Masters in Accounting from CU Denver. He was an avid golfer and skier, but his greatest love was his family. Jim dedicated a majority of his time to raising his girls. They are fortunate that he was able to be involved in their schools and their sports. He particularly enjoyed serving as the Lacrosse team dad for Kathryn for the last five years. A Celebration of Life for Jim will be held Friday, July 8, 10:00 am at St. John's Lutheran Church, 700 S Franklin St, Denver. In lieu of flowers, donations may be made to The Hill School, www.thehill.org, The Denver Botanic Gardens, www.botanicgardens.org, or the Melanoma Research Foundation, www.melanoma.org. Please share condolences at HoranCares.com.

Published in Denver Post on July 6, 2011
 
 

Rest in peace, Jim, you were a good man.

JerryfromFauq

I'm me, not a statistic. Praying to not be one for years yet.

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MariaH's picture
Replies 2
Last reply 9/21/2011 - 9:44pm
Replies by: MariaH, JerryfromFauq

I have a question to others who have done IL-2:  Has anybody else had tunnel vision as a side effect?  One week after Dave completed his first week of IL-2 he had an episode of tunnel vision that lasted about 20 minutes.  He checked in the following Monday for his second week of IL-2 and reported this to his onc, who ordered a brain MRI.  This came back clear.  His last dose was on Thursday, and Sunday it started again and has been consistent.  He contacted his onc, who said it could be from brain swelling.  Has anybody else had this side effect?

Blessings to all the mel warriors out there,

Maria

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plaza's picture
Replies 4
Last reply 9/23/2011 - 11:48am

Has anyone had success using ipilimumab Yervoy, or what did you use that was successful?

My mom was on a clinical trial and was working well until this past month. She had to be off of the the drugs for three weeks for a surgery. Her scans came back that the tumor on her liver had grown but it is still smaller than it's original size. The ones on her lungs had disappeared and now they are back. Since they grew back she was kicked off the clinical trial by the drug manufacturer, which doesn't make much sense since she was having success on the medication. Now they are telling her about this recently approved drug by the FDA and was just wondering if anyone has had success. Thanks for reading and responses would be appreciated.

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Lisa13's picture
Replies 4
Last reply 9/21/2011 - 12:37am

On Thursday, I have my 3rd infusion of Yervoy. Other than a faint rash on my chest, itchy skin and some abdominal cramping, I havn't had any symptoms.  When I see my Dr. tomorrow, I plan to ask what my absolute lymphcyte count is so I can see if my immune system is responding. That being said, do you have to have symptoms in order for this to work? I read on another website that the stronger the symptoms on yervoy, the better the response.  Is this true??  Are there any complete responders who had little to no symptoms and it worked?  I hate not knowing what's going on inside my body, but I'm hanging in there and hoping for the best.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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ValinMtl's picture
Replies 12
Last reply 9/23/2011 - 11:45am

Hello everybody, I'm back.  I was going to post last night but sadly saw the news about NicOz and decided to wait.  May God be with her and watch over her dear young daughter.

I started Aug 18-22

cytoxan (chemo) IV for 1 hour on day -7 and day -6

   developed arrhythmia...need to see cardiologist now...hope it has kicked back in place

  You will be given Mesna through IV. Mesna protects the bladder from irritation.

fluderabine (chemo) not as strong day-6, day-5 and day -4, day-3

TBI (total body irradiation -if on that arm) day-3, day-2, day -1

   I have definitely had achy bones and still do.

TIL cells - day 0

IL-2 (Aldesleukin) - day-0, day +1,  day+2, day +3, day+4

       you received IL-2 every 15 minutes until your body can't take it...I couldn't after two treatments, kidneys were giving out.

When I did return to Montreal on September 10, I was back in the hospital with slight hullacinations.  These were straightened out...too many cross over on drugs? Back as home, I am slowly gaining my strenghth, I couldn't keep anything down for the longest time except except gatorade.  But I travel back next week for a review and hopeul it will show regression, let's pray.  I'll keep you posted.  As Warren says, one step at a time.  I'm still very sore and can't write that well but maybe in a month or so.  Soon as I hear results I'll let you know.  Val xx

Live Laugh Love Nothing is worth more than this day!

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vickykay's picture
Replies 11
Last reply 9/21/2011 - 7:16pm

well, no nausea, but I have chills, headache and very much fatigue. I wanted to know if everyone who has interferon has to be stuck with a new iv everyday?   I am afraid I will run out of good veins.

 

 

 

 

 

 

 

 

 

 

 

 

 

/

 

Stage 3b - will start interferon Sep. 19th. Started interferon Oct.2011. Received three weeks everyday with very bad side effects. Stop high dose everyday and started shots. Had to stop after one injection, vomiting blood. Had Ct, came back clean.

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nickmac56's picture
Replies 8
Last reply 9/22/2011 - 6:18pm

My wife can't buy a break. After finishing up the 15 radiation treatments for her spinal cord mets (using the new tomo therapy radiation treatment), she had a brain MRI last Friday, which was a followup to her gamma knife treatment of the two brain tumors of 6 weeks ago. The good news, one of those tumors is gone, and the other is reduced in volume by 41%. The oncology radiologist made the claim that this means her melanoma is very radiation sensitive and bodes well for the spinal tumors as well as for any new tumors. The bad news is she has two new brain tumors - still pretty small (about 1/3" or 9mm in size in all directions). The locations are completely random - there is no clustering occurring.

So a week from this Thursday she will have the gamma kife treatment again. We opted for that over the Cyberknife because it is fewer treatments (one versus five), it's more precise, she's tough and can take the whole cage installation on the head process, it won't affect her hair (cyberknife causes hair loss for her, gamma waves do not), and in the event another tumor pops up in the next ten days, it can be added to the treatment protocol because they do a high resolution MRI the day of the treatment and it's easy to add that to the computer program.

So for her right now, given the lack of availability of any systemic treatment or cure, it is scan and zap. She remains on the steroids and antiseizure meds too. She is still on Temodar, but given the emergence of these new brain tumors I wonder if that continues to make sense.

So far, the zapping seems to be effective. I've read a lot about the radiation resistance of melanoma, and am of course worried that at some point the radiation is no longer effective. Anybody else have experience with radiation initially being effective but then losing its potency? 

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Terra's picture
Replies 14
Last reply 9/23/2011 - 5:08am

I feel ok about Derek's plan, but am very fearful about how much time he has left.  Yervoy did not work.  We went to Washington for TIL last week and they need Derek to wait 3 weeks to get the steriods out of his system (from his asthma inhalers) and to make sure the radiation he had after ipi works to improve his breathing (because of a tumour) - then they will rescan and if it looks good go ahead with the surgery.  No way to know if the radiation is working but his breathing has definitely improved.  The onc down there felt Derek had a moderate level of disease in his liver and wasn't concerned if grew by 50 or 100% for this trial.  Also, he is Braf negative and doesn't particularly see IL-2 or carbotaxol as an option - he feels this is his last chance.

 

My question is really how to support someone through all of this.  We have been at this since he was diagnosed stage 3 10 years ago, just before we started dating and he is tired of it all I know and says he has accepted what will happen, but is hoping this trt does give more time.  We have 3 girls 4 and under so it is pretty busy around here.  I feel like I am wasting time doing the routine things like cleaning the house, etc. He says he is ok with staying close to home and the little things we do - he wants to spend time with us, but I just feel like there is more I should be doing for him - I can't even say for sure what I want to do for him - not necessarily send him on a trip or something but what can I do to make things more meaningful for the time he may have left?  Some days he is down in his office, the kids are at daycare, and I am on mat leave so am home doing laundry, making dinner, and it seems that there is so much more I could be doing for him or doing for us but I don't know what that is.   

Terra

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/21/2011 - 11:43am
Replies by: Tim--MRF, Anonymous, FormerCaregiver

He is in south korea, suffering with Melanoma.

I'm wondering if he can get Zelboraf.

He is going to find out if he can get as he stay in South korea, otherwise he is going to travel to the states.

Is there anyone who knows how to get Zelboraf from overseas.

Thank you so much for reading mine and your comments in advance.

Peter..

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mombase's picture
Replies 12
Last reply 9/24/2011 - 9:18pm

I met with my oncologist, Dr. Rajappa, today to go over the PET scan results and to get the treatment plan solidified. We were both very happy with the results. While I did have one new tumor in my liver, the tumors in my lungs had not grown or multiplied. I will find out Thursday whether or not I have any new brain tumors. We talked about treatment options and both agreed that it makes more sense to start with the slower responding drug, Yervoy, since I basically have no symptoms and the tumors are stable. We will save the Zelboraf for the time when Yervoy no longer works.

The doctor even said that if there were no Yervoy, only Zelboraf, he would wait for a while before starting treatment because of how well I am doing in the moment. I am very happy that he treats conservatively and he wants my input. He is a jewel. Anyway, there is a lot of excitement since I will be the first patient getting treated with Yervoy in the Sacramento California VA System. I will start my first infusion next Tuesday and will have four total infusions in three months. I am VERY excited to get started, but not so excited to have the infusions!

More to follow!

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life is good's picture
Replies 1
Last reply 9/20/2011 - 11:05am
Replies by: MariaH

Hi there,

 

My name is Saskia, and I'm living in the Netherlands. My sister has been diagnosed with Melanome stage III (I think... I'm not really familiair with the staging of melanoma) in 2006. After an operation where here melanoma and her lymph nodes have been removed she seemed 'cured' (of course we were told that 'cured' was a bit of a strange way to express her stage, but free of cancer for the time being...)

In 2010 the cancer was back, mets in her lymfnodes in her abdomen. After the standard chemo, she was treated with ipilimumab and after 5 treatments it seemed to do nothing anymore. So time for another action!

She has no B-raf mutation and now she is eligible for the young TIL-therapy. The experience with this treatment in the netherlands is very small (she would by the fifth patient...) and we know that the treament is gonna to be very hard.

Has any one of you experience with this treatment and could you please share this with me?

 

Are there any other options after this for my sister?

 

Best regards and thanks for your ansers!

 

Saskia

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Anonymous's picture
Anonymous
Replies 0

Is anyone aware of a Yeroy and MEK trial?

Or has anyone thought of combining the two drugs? can anyone offer any advice or knowlege to this,

 

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Anonymous's picture
Anonymous
Replies 0

Is anyone aware of a Yeroy and MEK trial?

Or has anyone thought of combining the two drugs? can anyone offer any advice or knowlege to this,

 

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