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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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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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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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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Richard_K's picture
Replies 12
Last reply 12/14/2012 - 11:50am

 

Well, after a worrying six weeks, I have my eyes fixed on crossing the “3 year on Zelboraf” hurdle (March 3, 2013).  After the hiccups caused by hurricane Sandy, I had my blood tested locally and with my bilirubin back in line, I was placed on 720 mg 2x per day starting on November 7th.  I had clean scans on December 3rd, continued good blood work on December 5th, and I am continuing on Zelboraf at 720 mg 2x per day and into my 34th month on Zelboraf.  No more scans or tests until next year.

On another matter, I had a PSA last week and my urologist does not think I need another prostate biopsy for six months; it is a very slow cancer.

Dick

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meeshka6059's picture
Replies 8
Last reply 12/14/2012 - 11:23am
Replies by: meeshka6059, SidneyGracie, lhaley, Anonymous

My father is 82 years old and was diagnosed with Stage 4 melanoma about a month and a half ago. He has tumors in his brain, liver, kidneys, adrenals, lymphs, and elsewhere. He woke up one morning and couldn't move his left arm and was diagnosed at that time. He had full brain radiation for 10 days and has been on Zelboraf for about a week and a half now. His side effects are debilitating exhaustion, lack of appetite, and skin rash. Doc is taking him off for him to "detox" and may put him back on a lower dose. Fortunately he has no pain or nausea. I'm so glad to have found this website. Thank you for being here. Sending love to you all. ~m

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awillett1991's picture
Replies 6
Last reply 12/14/2012 - 10:43am
Replies by: Tina D, awillett1991, POW

Lots of talk on here about whether to stop Zel and for what. Here is my experience so far - not easy - however I don't regret my choice.

April 2012. BRAF V600D. Started Zelboraf with know cardiac met & 4mm brain met.

Sept 2012 - brain is ALL CLEAR and cardiac met is down to 7x11 mm - undetectable on PET. Chest/abd CT all clear. Stopped Zel 9/28 while still responding in order to do Ipi.

10/1/12, 10/22/12 - 1st & 2nd infusion of Yervoy aka Ipi. Diagnosed w Iritis.

10/29/12 - headaches lead to head MRI to check pituitary. Instead, diagnosed with 2 brain mets - old one, supposedly resolved by Zel, is back and now 6mm, new one 4mm. Diagnosed with hyperthyroid nodules from Ipi.

11/8/12 - SRS for 2 brain mets

11/12/12 - Ipi dose 3

11/14/12 - cardiac met rapid growth confirmed. Dr is shocked. Now 42mm x 42mm x 21mm in Rt Aorta. Restarted Zelboraf 720 mg twice daily, then stopped for 1 wk. Side lined by fever/chills and liver levels going up.

12/3/12 - last Ipi infusion, #4

12/5/12 - restarted Zel

12/6/12 - Confirmed still responding to Zel. Cardiac met shrunk slightly after only 15 days on therapy. Ipi response TBD however bilirubin, AST, and ALT up and down. ALP 6 times normal, next up is to confirm whether drug or tumor related and full scans i guess.

Plan to continue Zel at 720 mg/ day however dr is recommending 1 wk on/1 wk off due to my continued problems w toxicity. Ipi caused increased lymphadema in my leg/groin where I had total LND 2 1/2 yrs ago and fatigue is really bad. Low hemoglobin -> blood transfusion. No GI or skin issues yet :)

Heard today IPI+Zel trials not going well due to liver toxicity issues.

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lhaley's picture
Replies 22
Last reply 12/14/2012 - 10:25am

Last brain mri had shown everything was either stable or shrinking. Ct was clear.   Yesterday the mri showed that the 2 that had been stabled (radiated in June and then bleeding) is still shrinking however there are now about 20 brain lesions.   Options are now limited.

I had always said I won't do WBR but I have to try. They fit me for the mask today and will start on Friday.  Once this is finished I will be trying Yervoy. 

Linda

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Are there any clinical trials specifically for this gene mutation?

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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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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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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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Anonymous's picture
Anonymous
Replies 2
Last reply 12/12/2012 - 4:15pm
Replies by: mcanova, PSD

This might sound like a crazy question, but I had 2 nodes removed after they did the lymphangioscintography with radionuclide injections surrounding the melanoma excision site.  In the pathology report they describe the nodes as "yellow-tan, pink-tan" lymph nodes.  Wouldn't the nodes they removed, if they removed the right ones, be blue in color (from the radionuclide)? 

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EricNJill's picture
Replies 17
Last reply 12/12/2012 - 11:03am

I just wanted to update you.  After being denied by the insurance for the Yervoy, Eric's Oncologist had us submit assistance paperwork through Bristol Myers.  Bristol Myers contacted United Health Care and got them to approve the coverage of the drug!

So don't give up, even if the insurance says they will not cover the drug Bristol Myers will work with your insurance company to get it covered.

Good Luck, JillNEric in OH

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ksg1111@sbcglobal.net's picture
Replies 3
Last reply 12/12/2012 - 12:27am
Replies by: Josh, Anonymous, FeistyD

I was just diagnosed with Stage 4, mets to lung, spleen, chest wall. Can anyone advise best centers or oncologists  in Southern Californa that I should consult? I live in San Diego. Thank you..

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