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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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

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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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Tim--MRF's picture
Replies 19
Last reply 9/26/2011 - 11:00pm

I received an email from a long-time, close friend of Nicole (NicOz) and she gave me permission to share the note.  I hope everyone who reads this understands how very important you are to each other, and how very meaningful your interactions are.  Here's the note:

 

Dear Tim

We have never corresponded, yet I feel I know you, through my friend known to MPIP as NicOz.  Through her journey I have often come to this board to share in some small way Nicole’s journey.

I am so very sorry to say that Nicole has died as you have no doubt read on the MPIP board.  Nicole either died during the night of Sunday 18 September or the morning of Monday 19 September.  I do not yet have those details.  As you can image her family are dealing with their grief. If you feel this email is worth sharing I am happy for you to do so. 

I wanted to write because I know how important this board and the brave generous people who shared their stories were to Nicole at times.  How it comforted her, informed her, saddened her, angered her, but always made her feel a part of a community, which we her family and friends could never really experience being on this side of the melanoma battle.

Nicole was a warm, loving, caring person, who struggled with this disease as others do.  Often, more often than not, she found it easier to deal with this journey with anger and an acerbic wit in public, masking a heartfelt grief and fear, which she could not express, even at times to herself.  Behind the scenes I know that there were many she wanted to support and did a wonderful job of it. Nicole was a tenacious little Foxie Terrier.  Her bark was always far more than her bite.  It helped keep her strong in this battle, focused and determined. At times also driven like a dog with a bone.

Many on this board, some still here, some who are resting, and some who are no longer in need, meant a great deal to Nicole.  I could name so many and yet I won’t just in case I forget a name or get one wrong.  I would like to think they know who they are. You were of course, one of them, Nicole held you in high regard. The journeys she listened to, the discussions she entered, the stoushes she once told me helped her feel alive, yet at others times hurt her because she was misunderstood.  I use to tell her stay away, don’t get so involved, and let it go, they don’t know you. 

Then for the past six months I have come to this board and engaged with many of the people here, feeling their triumphs, hurting at their setbacks.  The way that the people here offer solace and concern, they empathize and support as well as inform and rally and I understood why Nicole found it so hard to stay away, to not get involved, why she engaged. I never intruded into what I felt was Nicole’s space, although many times I was tempted, to encourage, or to empathize or to simply comment on a post not responded to.

Nicole has left a piece of herself with many of us, she is my son’s God Mother, was a best friend.  These are but a few pieces I will carry with me always, she has left many pieces of herself with me and mine.  But I think that she would have liked to leave a mark, a deep, and a little shared thought with those whose journey she has participated and shared in, the community no one wants to be a part of, but receives so much because they are.  She would deny it, she would have something ready and clever and self deriding to say, to cover her soft spot but I think it important to share that I think if she felt she could, she would say….

Be true to yourself, be kind to yourself, be kinder to others and be kindest to snappy tenacious little foxie’s fighting the battle. Good journey’s all whose path was at one time joined with mine.

 Donna

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bcl's picture
Replies 31
Last reply 10/4/2011 - 3:19pm

don't be offended folks, Nic never liked a fuss, and previously said when she passed away she wanted us to simply say she karked it. ( She wanted us to add a smiley face there, but I just can't.)

Sadly today, after years of defying the odds, our feisty beautiful and brilliant friend passed away.  As she was setting off home from the hospital last week, her final instructions to us on her blog were  Hooray!! Behave, if you can :) 

RIP Nic love -  I will never forget you, and will forever be grateful to you for being my friend.    linda

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Replies by: mombase, momof2kids, Lisa13, JerryfromFauq, Anonymous, ohwell, Swanee

Hi everyone, this is my 1st time posting, just joined TODAY!

I'm from Pittsburgh, PA, thankfully home of the Hillman Cancer Center & UPMC Presby, where I've got all my surgeries, etc done already.

Back in May 2011, I had horrible headaches, and my vision was getting blurry, for almost a month I dealt with it (thinking it was my birth control doing it, so I got off that), and it didn't stop. So, June 21st 2011, I went for a head scan, and they found 2 SPOTS on my brain.

June 21, 2011, I was in the hospital and and June 22, I had brain surgery to remove the GIANT ORANGE size spot above my LEFT EYE (which caused the blurry vision), and they left the small spot on the other side of my brain in (size of a quarter).

I was out of the hospital after a few days and the eye doctor called and said that my vision tests showed hugely abnormal distress, and said I needed to come back in and after a few more tests, they sent me to the hospital, to either get eye surgery or a Lumbar drain (which is what I got for 8 days over July 4th), as all the fluid was still up around my brain causing stress on the eyes.

So for 2 months, for all of July & August, I had to keep checking with the eye doctor , and luckily my vision is almost back to normal as of Sept 2011 and in July I had the Gamma Knife treatment (which I just lost my hair in both spots they treated, and for almost 2 months it hasn't grown back!)

Then my chest xray showed I had 2 spots in my right lung (1.3cm & 3.9cm) and 1 spot in my liver (4.6cm), which for 2 months went untreated while my eyes and head were recovering.

FINALLY Sept 2nd, I started 1st injection of YERVOY / IPI . No side effects yet except for some very dry skin on my head. I go for my 2nd round Sept 23rd at Hillman Center in Pittsburgh. This is my 1st treatment for my chest spots, and all I can say is I HOPE THIS WORKS to shrink these down.

I will go thru whatever I need to to stay alive for as long as I can. I've had a very difficult time with this emotionally, I break down almost everyday crying thinking about the future, just having a hard time dealing with all this, most my friends must think skin cancer is a skin only thing and it's NOT, hell even I had no idea before I got this, I had moles removed this winter, where is where they think this may have came from.

I'm 31 years old and have 2 kids, who are 6 & 2, and I want to stay on this beautiful earth for as long as I can to be with my kids!

I'm just so nervous about whether this works or not, I am not looking forward to IL-2, if I have to go to that, I'm BRAF negative.

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