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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Shelly in Switzerland's picture
Replies 11
Last reply 3/10/2011 - 6:14am

On Friday I was told that I do in fact have brain mets as well as edema.  It looks like the only option in Switzerland is WBR.  Their protocol is that if there are more than 3 tumours they do WBR.  After that they would do targeted therapy.  Thoughts???

Screaming, crying, and reeling with this news!  Trying to stay on the positive side of things though.  Ipi looks like an option for brain mets.  Am I correct on this? 

Shelly

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akls's picture
Replies 7
Last reply 3/8/2011 - 6:15am
Replies by: akls, Anonymous, LynnLuc, Vermont_Donna, Jerry from Cape Cod, Fen

Hi all.

I haven't posted much about me lately because it's been pretty boring :)  I went for my yearly ob/gyn exam and all was good except my thyroid levels both free T4 (low) and TSH (high) which puts my hypothyroid.  Not really uncommon after inteferon from what I hear.  After finding out my levels were off, of course I start feeling where my thyroid is.  One side is noticably larger, my Dr. said he could see it and feel it, but just one side.  So...instead of just putting my on synthroid, he is scanning my thyroid on Thurs. just to make sure there are no nodules or whatever he is looking for.  Now my mind is freaking that it's back.  Any comments would be appreciated.  I am probably just being me and worrying over nothing.  BTW I had a clear PET in July 2010.

I read the board daily and comment when I think I have worthwhile advice.  I am in awe of all the warriors on this site. 

 

Amy S. in Michigan

Stage IIIA 5 1/2  years NED Completed 1 year interferon 2009.  God is Good.

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But, has anybody heard from Amy Busby, or JillnEric in a while?

Insert Generic Inspirational Motto Here

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heg50heg's picture
Replies 7
Last reply 3/7/2011 - 12:04am

Interferon treatments to start on Monday. If anyone else is in this posistion, maybe we can share experience. Kind of afraid of the next month and then the second 11 month period as I am hearing many different stories on the side effects, but after talking with the melanoma team at St. James in Columbus Ohio I feel I really need to make it through for best chance of relapse. I will try and stay in touch

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heg50heg's picture
Replies 7
Last reply 3/11/2011 - 10:59pm

Interferon treatments to start on Monday. If anyone else is in this posistion, maybe we can share experience. Kind of afraid of the next month and then the second 11 month period as I am hearing many different stories on the side effects, but after talking with the melanoma team at St. James in Columbus Ohio I feel I really need to make it through for best chance of relapse. I will try and stay in touch

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RMcLegal's picture
Replies 45
Last reply 10/25/2011 - 8:37pm

I recently read a discussion board post by a woman, newly diagnosed with melanoma, who wrote that several of her friends had responded "at least you don't have breast cancer".  This inspired me to write a new blog post, mostly tongue-in-cheek, about melanoma awareness unfairness.   www.hotelmelanoma.blogspot.com.  Does anyone else sometimes suffer from pink fatigue?  Best wishes to all.

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mom3girlsFL's picture
Replies 4
Last reply 1/14/2012 - 6:56am

Anyone had issues with itchy skin?  Not on any treatment right now, off interferon since sept.  A little nervous because I googled itchy skin symptoms and came up with possible internal issues with liver.  Have onc appt tomorrow so of course I will bring it up, just need to shut my brain down from all the negative thinking but would also like a "heads up" if this was a symptom for liver mets?

Thanks, Laurie

Do not fear tomorrow, God is already there.

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Erinmay22's picture
Replies 5
Last reply 3/9/2011 - 10:57am

On Tuesday I under went a VAT's procedure to do a biopsy on one of the many tiny (size 2-4 mm) nodules on my lungs.  They removed one spot on my left lung.  Initial tests shows malignant cells (per my surgeon) but they are waiting for pathology to confirm what they are.  I was recently staged a 3b in November.  I was trying to qualify for Ipi trial when these spots showed up on a CT scan. 

So now I am starting to research what my options may be.  Any one have experience and info on what they did?  I am should hear from my surgeon next week some time on what the pathology report said - then I'm sure they will have some options for me as well.  But I want to do some research first.  I have no symptoms, these were just found from the CT scan. 

Thanks.  I'm sure I should be freaking out about this even more - maybe it's because I'm still on pain meds ;)  or if I have figured I can't change the results so I'll take it one day at time. 

Thanks!

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Karen wife of Phil's picture
Replies 2
Last reply 3/6/2011 - 3:48am
Replies by: FormerCaregiver, Fen

We just received the news that Phil doesn't have the B-RAF mutation. My husband's phone died during the conversation with the doc, so not sure what he has up his sleeve. We have an appointment on the 15th so will find out some options then, And the research nurse is going to touch base with us on Monday. We have done IL2, ipi, OX 40 something or other, a bit of radiation. His mets are in his lung and in his intestinal tract. We know they are growing because his pain has increased to the point that he is taking more pain meds. We are kind of at a loss at this point since all the hopeful treatments haven't panned out. The doc mentioned we would look at some other trials. I am just beginning to see mention of this Eisai and MEK/P13. Could someone post some links so I can check these out to talk to the doc about when we see him in a week. We are trying to stay positive but this was a tough blow. We need a little something to hang on to. Thanks for any info any one can give me.

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KellieSue's picture
Replies 1
Last reply 3/5/2011 - 8:16pm
Replies by: Fen

Just started B-RAF last week.

I of course will speak to my oncologist next week about this but I was wondering if anyone knows if having elective surgery while on B-RAF would be allowed.  I've read through all the paperwork and it doesn't say anything in there.

I guess it's not really elective, except for the timing. I would be electing to have it done now if I could, but I'm not looking to get butt cheek implants for vanity sake.

I had a unilateral mastecomy due to melanoma in the breast back in 2007, I had one follow up surgery in 2009 to replace the tissue expander with a real implant. I've never finished my reconstruction. I would like to make the reconstructed side look "real" and make the other side match, if you know what I mean!  :D

I imagine it would be a fairly simple surgery(from what I remember my plastic surgeon telling me at the time) and I know it's covered under my insurance as it's part of the reconstruction process I started years ago and fairly simple recovery(at least compared to some of my surgeries).

Any thoughts?

 

Kellie(from Iowa) Stage IV on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Hello-With 7 tumors including 1 on lung, my brother was put on Braf/GSK 9 months ago.  All have dissapeared except one in pelvic area-which grew and therefore, he failed Braf according to trial standards.  So his Dr. at Sara Cannon put him on GSK Braf/MEK combo.  All PET was clear except the one reamining stubborn tumor and we are hoping this Braf/MEK will knock it out.  No side effects - he feels great, but once again so mysterious why all six were eliminated and yet one still remains.  We are so close!

Best of luck to all and feel free to contact direct.

ThinkSpringSnowbirds!!!

MrsMarilyn from Michigan

sister of Gary (from Florida stage IV)

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Doug-Pepper's picture
Replies 3
Last reply 3/5/2011 - 6:51pm

I am praying for so many that are affected by this horrible disease! We are still juicing, eating more natural foods & taking supplements. Started a bible study on "The Seven Pillars of Health" by Don Colbert. Anyone have any suggestions on Alkaline water filters? Thanks, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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emilypen's picture
Replies 6
Last reply 3/5/2011 - 3:38pm
Replies by: KellieSue, P Brown, Anonymous, tennisgirl, mrsmarilyn

Hi All,

My hubby was on a MEK/P13k trial and after having an adverse side effect he was taken off the study. One of the tumours in his back has grown too close to his spine so its surgery on Tuesday, followed by some radiation and then on to PLX-4032. He got the dacarbazine arm of the study last summer so with expanded access he is allowed to get on the Roche B-Raf drug right away.

So what I'm wondering is how many people on this board are on the drug now and for how long? and if you failed off B-RAF how long were you on the drug?

We were hoping for a B-RAF/IPI combo trial but they don't have that set up yet, our onc says he expects it soon.

Thanks,

Emily

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cheryl brodersen's picture
Replies 5
Last reply 7/2/2011 - 9:38am

My husband, Steve,  has had 3 treatments, a week break, and starts the next three treatments next week...and then the scan.

Anyone have any experiences with this combo? He has been pretty sick, but his doctor said that is to be expected after the 18 rounds of DTIC he went through last year (in 14 months). He was certainly never this ill and unable to do anything. The Neulasta seems to have kicked in and he's back to being up and around.

I would love to hear anything about the A/A treatment, good or bad.

Thanks,

Cheryl, wife of Steve, Stg. IV

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

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cheryl brodersen's picture
Replies 7
Last reply 3/21/2011 - 5:36am

I was on this bb in the spring when my husband, Steve's scan showed a lit up right tonsil. Even though there are only about 30 cases of MM going to the tonsil, his was indeed metastatic. Just so everyone knows, it can happen so don't assume it's an infection (as we first did) just because it is so rare. And a tonsillectomy after 50 is NOT FUN. Good luck to all!

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

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