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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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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Anonymous's picture
Anonymous
Replies 4
Last reply 12/20/2012 - 11:41am

I have been following you all now since July. My very good friend was diagnosed with Stage IV with no primary in July 2012. By sheer luck, she had a cyst that caused her severe pain and when she had her op. to remove it, they discovered melanoma in her ovary. She was 29 then. I say sheer luck, because otherwise it wouldn't have been dealt with.

We live in the UK and she managed to get onto the GSK trial. She started on the trial in August and has had two scans. On the first scan, the mets in her lung and hip began to shrink. Her second scan showed that her lung mets were immeasurable and her hip tumour hadn't got any smaller but  it had begun to decay from within.

When we got the original diagnosis, we were all devastated, obviously. I was appointed the role of Researcher in 'Team Helen ' and my greatest source was MPIP. Thanks to all of you for providing me with information and hope so I could feed it all back to her. I think of you all every day and will you on, cheer you on and pray for you all. I shed a tear for Kevin (several) but really appreciate your  bravery, strength and sheer bloody determination.

Thank you all very much. You are pioneers.

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Snickers60's picture
Replies 3
Last reply 12/12/2012 - 5:57pm

Has anyone found anything that helps the fatigue of the ZEL ?    Vit.  B-1 (benfotiadine) has done the trick for his neuropathy shooting pains in his legs/feet at night and day, but he is still fighting pretty bad fatigue.   The B-1 saved him from taking that nasty neurotin, so that was a huge blessing.

Anyone come up with anything that helps that ???   He's still working 5 days a week and we keep our DATE DAY on Sat. to do lunch/movie or something, but it pretty much wipes him.   He's been anemic for a while.   (He's also taking a B-50 Complex).   Any suggestions or experience would be appreciated. 

THANKS, 

Nancy (devoted wife of 3 X warrior Wayne)   <><

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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JakeinNY's picture
Replies 1
Last reply 3/27/2013 - 12:19pm
Replies by: newyorkguy

Google "ketogenic diet cancer" and you'll find the Wurzburg trial in Germany, the RECHARGE trial in NY, or the trial involving a Dr. Seyfried on 2 young kids.

This diet does not cure (at least in the great majority of cases so far) but it may well keep tumors from growing. It is not designed for one particular cancer, just for those whose tumors light up on PET scans.

I'll try to get back on and get you the links but you should be able to come up with them easily.

The naysayers will say "They were limited trials or they did not include melanoma patients or blah blah blah....but my answer to the naysayers is to tell that to the people that had NO OPTIONS left and did well.

The interview with Dr. Eugene Fine, M.D. on the site "Livin la vida low carb" is honest and informative and so worth listening to.

Best wishes everyone.

Do the best you can.

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Josh's picture
Replies 11
Last reply 9/22/2014 - 10:37am

Hello,

 

I'm currently eight weeks (2 infusions) into the Merck Anti pd-1 trial, and my symptoms are getting much worse (crazy pain in knee tumor, night sweats, groin mets getting larger).  I'm writing because I really feel like things are going downhill quickly so I'm considering going off the trial and getting on some other treatment, however, I know that this pd-1 treatment is among the most promising out there. So, for people who have responded well on an anti pd-1 trial, my question is did any of you get worse after the starting the pd-1 infusions, only to suddenly get better? In other words, did anyone feel like the drug wasn't working, only to have it start working after the 3rd or 4th or 5th infusion? Thanks a lot everyone!    

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aldakota22's picture
Replies 13
Last reply 12/17/2012 - 7:19pm

  Yesterday Dec.10, was the end of month 15 on "Z".For me this drug is truly a miracle drug.Side affects for me are manageable Always at full dose.Been working full time all those months and have not missed a day of work cause I was to ill. Like I had posted earlier Dr. Anna  Pavalick demanded that I have a complete physical.Feels I am actually healthy to put melanoma on the back burner.Did have a slightly low iron count ( just under borderline).and a slight PSA concern.Will have the thrill of a colonostophy (my first) this Thursday .Also a visit with the urologist on Dec.20.I post so that maybe I can be a positve story for so many on the drug out there.Dick who posts is my inspiration.I thank Mother Mary every day and pray to God for everyone on thsi site.I really beleive that my positive mind set, support by family and this site are very powerful aids in my fight against the beast melanoma.Science & Medicine will find a life saving treatment in our battle.So many sad stories I hope that during this holiday season I can get someone who feels down, out of their funk with  a real uplifting post.I consider myself as the luckiest man in the world right now.Praying that I will have a very large lucky group join me in this celebration .Beat the Beast.    Al

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lou2's picture
Replies 10
Last reply 12/21/2012 - 12:45pm
Replies by: lou2, POW, Anonymous, Janner

Doctor's office called to explain costs involved in surgery tomorrow.  It seemed very high to me - $1000.  Small city in the south, where one might expect not to pay a premium like a big city elsewhere.  Board certified dermatologist but not derm onchologist.

It is a small spot recently diagnosed for the first time.  Details:

Malignant melanoma lentigo maligna type

Breslow thickness 0.15 mm

Clarks level II

Mitotic rate zero

etc.

Note on pathology report that it will be a 20 mm excision.  This is quite a bit bigger than the spot.

 

And a separate question.  Seems like biopsy of melanoma that is restricted to the surface, not deep, might spread these cells into deeper skin layers.  Is this something to worry about?

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POW's picture
Replies 7
Last reply 12/12/2012 - 5:25pm
Replies by: madeclaire, POW, awillett1991, jeffjohn78, Anonymous

My brother's melanoma recently started to become resistant to Zelboraf so I am looking into clinical trials on his behalf. I have found a number of sites similar to clinicaltrials.gov that present a summary of the trial-- which drug(s), length of time of study, inclusion/exclusion criteria, etc.

What I can't find is the details about exactly what the treatment regimen will be. Are these oral medications or injectable? Will the patients be hospitalized or not? If hospitalized, will the protocol be 1 day or 5 days and then home for 3 weeks? Will they have to come in for blood tests or scans every week or every month or what?

Transportation, mental confusion, and the "hassle factor" will be very important to my brother when choosing a trial. Does anyone know where I can find such details?

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A couple articles that give hope for a cure.  The first article doesn't specifically mention mel but seems to have some real promise. 

 

http://www.foxnews.com/health/2012/12/10/girl-puzzling-diagnosis-helps-eradicate-cancer/?test=latestnews 

 

http://oregon.providence.org/patients/programs/providence-cancer-center/Documents/sbrt-ipressrelease-060512.pdf 

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