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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"Acute heart failure due to autoimmune myocarditis under pembrolizumab treatment for metastatic melanoma...... it is important to be aware of such rare, but severe immune-related adverse events."

http://7thspace.com/headlines/506871/acute_heart_failure_due_to_autoimmu...

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/21/2015 - 6:22pm
Replies by: Ninniditti

Does mucosal melanoma respond to immunotherapy treatments differently from cutaneous?  My father has a ery high tumor burden and was just taken off one of the pd-1 trials after only 2 mts since his scan showed many new nodules and no improvement.   His oncologist is now recommending yervoy.  Have any of you had experience with a similar situation?  

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arthurjedi007's picture
Replies 30
Last reply 5/4/2015 - 8:53pm

I've had a good 11 month run on keytruda plus 8 spots of radiation. Still it hasn't been enough. Stuff keeps growing. Since it's doing some good and it's fda approved I can stay on it until I get on something else.

Basically 7 are shrinking. All at or near radiated spots. 5 are growing including the t10 that almost paralyzed me last year. One new one is on or in my left kidney which is suprising because it is new and pretty much all my other new tumors in the past started in the bones and grew out. The rest of im assuming around 20 stayed the same. So I'm glad keytruda is fda approved because trials would have kicked me out. The docs were actually debating whether to give me it today and decided to because it is doing some good. After all keeping 20 tumors at bay and other stuff is pretty good but not good enough. Kind of weird how each scan shows things growing but they are usually different spots. Also by growing 3 of those 5 are declared that because of the uptake not thst they see a larger mass outside the bone. The other 2 are declard that because of the uptake and soft tissue mass is larger. The new one on the kidney is also a tissue mass.

im very suprised the scan wasn't better. But I'm glad finally Siteman did a fairly detailed report that at least listed each tumor shrinking and growing. Also it could have been worse but I was expecting much better. Way better than the first 3 meds where everything kept growing though.

Now to scramble and get on a new treatment. Siteman has 30 open slots for the ERK trial. It is BVD-523 by BioMed valley discoveries. It is part 2 of phase 1 where they have already figured out the dose and are expanding to more people. Depending on which nurse you believe either 1 patient has had a partial response or 2 patients have had partial remission. That is with about 16 patients none of which are at Siteman because they haven't recruited anyone there yet. About 5 places have this trial. The side affects so far seem very similar to zelboraf. Since neither zelboraf nor the taf mek combo shrank anything I don't think this is the right trial for me but my doc does but he was out of town so couldn't talk about it. 

Tomorrow I guess I'll call university of Chicago for an appointment with dr Gajewski or dr Luke and try to finally go there and try to get into their opdivo pd1 anti lag3 trial or see what their thoughts are on what I should do.

Also TIL with dr Rosenberg is still an option but based on what Catherine said I'm not sure if I should pursue that.

im disqualified from the huntsman virus treatment because of bone metastisis.

Since keytruda is not enough for the internal stuff the trials for lesion injections with pd1 are not a good choice.

A lot of the other trials like pd1 anti kir and stuff I'm disqualified for cause I've had pd1. Although I may be missing something.

im not seeing a Ido pd1 combo or anything that might be good unless I'm missing it. Wdvax is still phase 1 and I've heard nothing about how good or bad it is.

So I dunno really what to do. Quite awhile back a lady on here posted how the pd1 anti kir trial failed her and she decided to go to md Anderson. I never heard what treatment she did or how things turned out. Her way of thinking she already did a pd1 combo so she needed something else. So maybe they have something good I just don't know about.

I just don't want to make a bad decision but I don't see any really good options. Since the t10 is getting worse I feel I only have one last shot at a treatment. I have to make it a good one or I'm probably not going to make it further. Maybe instead of Chicago I should just go to md anderson or memorial Sloan Kettering. But those typically require flying and the assistant doc couldn't say if my spine was ok for it or not based on the pet ct. They would need a mri. But he did say there was no mention of narrowing of the spinal canal and stuff. Plus I can still sit and touch my toes fine which I couldn't do last year when I was almost paralyzed. So I dunno. Also I get wore out fast after only a couple hours traveling. Also I need lots of food and drink or I get weak. Plus my parents who have been taking care of me are not getting any younger. So I just don't know what to do.

Thank you everyone one for your prayers and best wishes. I wish I had better news.

Artie

 

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newmanmark's picture
Replies 4
Last reply 4/23/2015 - 6:18pm
Replies by: newmanmark, Ed Williams

I was wondering if anyone has any information on the treatment for melanoma mentioned in the last paragraph of this article.  It looks like there's some major progress being made.

http://ottawacitizen.com/news/local-news/ottawa-scientists-hail-viral-st...

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/24/2015 - 1:42pm

I would like to know how long Keytruda treatment last. Hoping somebody on this board have experience with the treatment.
Good luck to all of you!

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/20/2015 - 10:36pm
Replies by: Bubbles

Anyone heard Weber was leaving for NY?

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newmanmark's picture
Replies 5
Last reply 4/22/2015 - 11:55am

Hello,

I started Mekinist and Tafinlar today and I'm looking for some positive stories from people who are having success with this treatment.  I am 35 years old and stage 4.

Thanks

Mark

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eturner82's picture
Replies 4
Last reply 4/20/2015 - 10:41pm

Just wanted you to know thinking of you and saying a prayer!!

Emily

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/28/2015 - 11:12pm
Replies by: SusanD713, Anonymous, jennifer83

Good Morning:

I was wondering how many on this board started as a stage 1a or b, progressed to a later stage, and the time frame of the progression.   I was dx stage 1b in June 2014 with a nevoid melanoma and I know that my chances of never having to deal with melanoma again are excellent, I still can't completely move past the thought that it one day will resurface.  

I find myself coming to this site often not just as a resource but to silently cheer on and offering up prayer to those who are so bravely fighting this awful beast.

Blessings to you all

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Janner's picture
Replies 4
Last reply 4/20/2015 - 11:12am
Replies by: Janner, ldub, Bubbles, Aiden

 I was diagnosed stage 1a (translates to stage 1b with today's staging) 23 years ago.  I've had two other primaries but am still stage 1b. I just realized that my adoptive father passed away 1 year ago on my anniversary from melanoma.  The anniversary was forgotten last year but I realized the connection tonight when someone emailed me about my responses here and I put into words my long history.  I miss my Dad but he was 89 and had lived a full long life.  The irony that he would get melanoma and pass away from it after my long history never failed to amaze me.  

Anyway, there are lots of early stagers who go on with life and stay early stage!  Never assume the worst!

http://www.MelanomaResources.info

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Aiden's picture
Replies 4
Last reply 4/20/2015 - 1:08pm
Replies by: looptwelve, Aiden, kathycmc

Hi everyone!

Here is my story.

I am 35 white male. 

In january 2015 I went to visit my new primary doctor.  I was wearing simple black tshirt and just like that my primary doctor said, " You do have lots of moles on you, you should see a dermatologist. We white people tend to have skin cancer"  Well, that  wasn't my purpose of that visit. Ok.

Anyway, after that visit I schedule a visit to the dermalogist. 

End of January 2015 I am in the office seeing dermatologist. After quick conversation, she told me to undress for the full body skin check. Ok 

She started examining my skin walking around. Suddenly she stopped and said " you do have suspicious mole on your back. I have to do the biopsy of it"  I said are you serious?  Doctor said yes, you have 50/50 to have skin cancer. I was in shock. 

Biopsy done. I am waiting 10 days to find out my final results. Very difficult time for me. 

Finally on Friday afternoon my dermatologist called and said. " I have a good and bad news. Bad news is it's Melanoma, Melanoma in Situ found in the mole, good news it's very early. It's just on the surface of the skin, and didn't even break the first layer of the skin" 

What now, I asked? She said " I don't want you to worry about it. It's very early and the prognosis are great in your case. You need to have a surgery to be done soon. After that you will be under regular check ups" Ok

Mid of February 2015 I had my surgery done at University of Chicago Hospital.  After my surgery I had my final results. All margins are clear. No additional treatment. Continue fallow up with dermatologist. 

Eventhough, my case was cought early, I can't find a peace. I think about that everyday, and trying to stay positive. Soon I am going to see my dermatologist for the first check up. 

How to live with the thought of being diagnosed with skin cancer?

Thank you all for reading my story  

Aiden. 

 

 

 

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lesli's picture
Replies 4
Last reply 4/20/2015 - 8:00am
Replies by: _Paul_, arthurjedi007, lesli

Hi All,  my scans at 7.5 weeks on Keytruda are showing universal growth in all lesioins.  In all hope, could it be inflammation?  How long to proceed treatment before considering another option (there is still a question about what that is)?  That is, what is the definition of "failed" on Keytruda?

Thanks in advance. Leslie

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jennifer83's picture
Replies 3
Last reply 4/20/2015 - 1:25pm
Replies by: Anonymous, MattF, Janner

Hi there,

My surgeon told me I was cured of my melonoma, originally diagnosed in November 2014... stage 1B - middle right side of my back... WLE and SNLB (came back negative).  I've been going to my three month check ups and have had a few more biopsies that have came back negative.  

Just this last week, my WLE scar has developed quite a lump and is super itchy.  The scar is still a deep pink/purple and has always had a textured feeling.  The color hasn't changed, but you can see the lump area has expanded the color, marble size.  

Of course, I'm going to make an appt with my derm first thing on Monday - but I was just wondering about thoughts/ looking for support/ seeking experiences.  I'm a very positive person and am banking on this just being scar tissue that may be inflammed.  Has nyone here had a similar experience?  What was your outcome?  

Thanks for listening!
 

Jennifer

Jennifer

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chowmene's picture
Replies 1
Last reply 4/18/2015 - 2:21pm
Replies by: Janner

can or is pain associated with mole growth?

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