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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Vermont_Donna's picture
Replies 14
Last reply 4/20/2013 - 10:23am

Hi everyone,

I havent checked in here in a long while...I am 22 months NED after 4 doses of 3mg/kg Yervoy in a clinical trial. I feel so blessed after many treatments and many side effects endured over the last six years. I am however dealing with some cardiac issues (unrelated to melanoma) after having an acute stress (takot subo cardiomyopathy) heart attack in April of this year. i am no longer working and cardiologist's orders are to take better care of me!

 I hope to have time now to check in here on a more regular basis!

Happy Holidays!

Vermont_Donna, stage sa

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JerryfromFauq's picture
Replies 2
Last reply 12/15/2012 - 7:49pm
Replies by: NYKaren, Vermont_Donna

As some of you may know, our much loved and respected Jane from Maine was in an horrific automobile wreck in October and barely escaped death.

   She is still under the weather with extreme pain and finally receiving an MRI on her neck wednesday.  (Her car was totalled by a hit & run drunk driver and ehe Martha Washington Trauma Center sent her on the way vomiting without even discovering that she had broken ribs and more.)     

This wonderful lady that has helped so many of us asks for our prayers in her healing.  She just had two /FNA's on spots seen in her latest scans and they finally came back not showing Melanoma, so she has made it for 6 years NED since her successful IL-2 treatments.

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

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POW's picture
Replies 1
Last reply 12/15/2012 - 12:27pm
Replies by: kylez

 

I found a Youtube video of Dr. Suzanne Topalian discussing the preliminary results of the Phase 1b clinical trial of BMS's anti-PD-1 antibody MDX-1106/BMS-936558  in June 2012.

Basically, 70% of patients had adverse events, most common events (~50% of patients) were fatigue, rash, and diarrhea.

For melanoma patients (n=96) 28% had either a partial or a complete response and an additional 6% had stable disease for at least 6 months. Of 31 patients that responded 20, were still responding after 1yr.

View the entire presentation at 

Topalian Youtube video ASCO meeting June 2012 http://www.youtube.com/watch?v=Ij_hq_52K7M

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Is anybody on a combination drug treatment Yervoy(Ipilimumab) and Sylatron(Interferon) similar to the clinical trial NCT01375842 ? Wondering what the side effects are like.  Thank you for your reply.

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Is anybody on a combination drug treatment Yervoy(Ipilimumab)  and Sylatron(Interferon) similar to the clinical trial NCT01375842 ?  Wondering what the side effects are like.  Thank you for your reply.

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SidneyGracie's picture
Replies 5
Last reply 12/15/2012 - 9:42am
Replies by: awillett1991, POW, Anonymous, jim Breitfeller

Are there any clinical trials specifically for this gene mutation?

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Are there any clinical trials specifically for this gene mutation?

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Angela C's picture
Replies 5
Last reply 12/18/2012 - 3:03pm
Replies by: TSchulz, aldakota22, POW, Swanee

Hey everyone.

Just wanted to put an update out here that I started on a new trial this week. It's a MEK and PI3K inhibitor trial. The drugs are MEK162 and BMK120. I'm in the trial at Massachusetts General. Yesterday was my first day of the trial. I'm already experiencing some vision side effects, which is a little concerning, but the doctor said that my body will adjust to the medicine as I continue to take it and the vision should get better. I feel like I have some light sensitivity, but they said it's most likely fluid buildup behind my retina. Eye side effects are a well known issue with these drugs and I'm seeing an eye doctor ever one or two weeks.

Does anyone out there have experience with a MEK and PI3K trial? I'm not sure that there have been a whole lot of people on these trials yet for Melanoma.

~Angela

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

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Hi Nancy,
I saw your post about Benfotiamine. I'm interested in purchasing it but can't find anything about what dosage to get.
Do you know how many milligrams Dr. Oz recommends & how many times per day?
Thanks for any advice on what sounds like a great supplement.
Best to you and Wayne,
Karen

Don't Stop Believing

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Rebecca and Bob's picture
Replies 6
Last reply 12/14/2012 - 1:50pm

My husband finally went in for his appts and I wanted to put an update out there. A lot of people on here gave me support and hope when Bob was originally diagnosed with mets to his lungs. He has been stage IV since the beginning of 2008 and NED since 2009 after IL-2 and surgery to mets to his intestines. You can read our profile.  I pray he stays NED and I pray often they find a cure and better less harsh ways to treat it. 

Thank you everyone of this board for being there for one another and always listening when someone needs help.

Rebecca

Believe

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NYKaren's picture
Replies 4
Last reply 12/15/2012 - 6:07pm

So I saw Dr. Kruger @ Rockefeller this a.m. 

at first he said I should discontinue the DPCP upon starting Zel, but upon further reflection he said that for MY benefit, he would like to see me continue it.  Obviously my results will no longer be germane to his trial, but it's extremely nice that he's letting me continue using it.  They biopsied healthy skin treated w/DPCP and it is showing immune response.  Today he biopsied a mel met that's being treated. 

I have a meeting scheduled w/Dr. Wolchok's nurse on Monday, and soon after I will receive the Zel pills in the mail.

I hope that the combo will deliver my mel a real knockout punch, cause it sure needs it!

Happy holidays to all.

karen

Don't Stop Believing

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bigb0624's picture
Replies 9
Last reply 12/19/2012 - 10:40pm

I was diagnosed in July, 2012 with Stage 4 melanoma in my stomach that metasticized to my liver.  In Aug. 2012 i found i was BRAF pos i started Zel and have had great success with it.  Tumors have shrunk, no new "hot spots", and feeling good.  This past week  after my PET scan showed great results my doctor wanted to plant the IPPI seed that i might have to make that switch sometime in the near future unless the Zel does continue to work for longer than the average.  The side effects of IPPI scare me.  Anyone have the this same scenario?

Big B 

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NYKaren's picture
Replies 6
Last reply 12/17/2012 - 9:06pm

Hi everyone,

I read on here (I think) that someone was retested for BRAF and came back positive.  So I went to Dr. Wolchok and said that I'd read that someone was re-tested after a recurrence...long story short, he called me tonight and told that I AM BRAF POSITIVE!!!  He was surprised, and so was Dr. Halpern (my onc derm who did the biopsy) and they couldn't wait to give me the news!  Needless to say, I burst out in tears on the phone.  I really love my team at Sloan.

So I am to start Zelboraf.  As many of you know, I'm stage IIIc unresectable--had an immediate recurrence after resection, so I've had mel for 2 years now.  thankfully, unless something shows on next week's PET scan, it's remained cutaneous,  but is goes from my scalp down under my chin and one side of my neck.  It is also in my ear canal and I'm at high risk for losing my hearing and my ear.  It has noticeably traveled further down the canal recently.  

I'm in in a clinical trial for DCPC, I actually have an appointment tomorrow...I am due for a biopsy there, and Dr. Wolchok says it's up to them if they want to keep me.  I can't put my hands on the trial documents, so I don't know if I'm allowed to be on another treatment at the same time.   It's pretty early in the game to see if the DCPC is working, but I'm certainly not going to let an opportunity to be on Z go by.  

Dr. W. confirmed that they are using a new BRAF test, we we really don't know if it's because I'm dealing with recurrence or it's the test.

I'll keep you posted.

Hey Al, maybe it was your good vibes!

hugs to everyone,

Karen 

Don't Stop Believing

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Tina D's picture
Replies 10
Last reply 1/5/2013 - 3:21pm

We saw Dr Linette at Barnes-Jewish Hospital/Siteman Cancer center today. Cant exxagerate how impressed we are. I will spare long details, which are prob interesting only to us :-) . Bottom line is: I am starting ipi next week. We are very comfortable with this & I am having Dr Linette oversee the treatments, so we will travel to St Louis for treatment days.It is only a 3 1/2 hr trip! Thank you to those who let me know abt him. We really couldn't be happier with the choice of Drs. And... we left the appt feeling encouraged- something neither of us really expected to feel. SO... we have a plan!

I appreciate the people on this board SO much. What a wealth of encouragement,advice,experience,support and help you all are. 

Tina

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Lisa - Aust's picture
Replies 13
Last reply 12/17/2012 - 2:40am

Hi Everyone,

I read everybody's posts regularly, but dont often post myself. Just an update on my hubby Craig who progressed to stage four 2 years ago (1 Dec 2010), after being stage three for about 3 years. Latest set of scans are clear after having been on Z (GSK phase 3) for 96 weeks. Hopefully this provides some hope to those newly diagnosed and starting Z - I know everyone wont have such a response, but I find it so encouraging that some people CAN have this response. It is a nice relief to be able to look forward to chrissy and our upcoming 1 year wedding anniversary :)

Wishing everyone a happy and healthy Christmas, all the way from sunny Perth

Lisa

xx

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