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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jmbaer's picture
Replies 4
Last reply 7/21/2012 - 10:06pm

My dad started in July 2011 with a retinal detachment.

- Opthomologist found a tumor causing the detachment.

-Sent to Wills for radio therapy.

-Lung Met found and resected Sept 11.

-Lung met reappeared and resected again. Oct 11

-Jan 12, started to have some weakness on left side.. went for a mri and pt scan. and found a brain met.

-Did cyber knife to the brain met.

-A couple more spots showed up in his body. One larger one on his adrenal gland.

-Started Yervoy in March 2012.

-July 1 had gamma knife for new spots in brain.

-Had a Pt scan last week July 10th 2012  that showed a few more spots and the adrenal gland spot got larger and dr feels the yervoy didn't work.

WHAT ARE THE OPTIONS??

Dad is 70yrs old and strong.

 

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Gene_S's picture
Replies 7
Last reply 7/21/2012 - 9:07pm
Replies by: Anonymous, Webbie73, ChrisTheWilsonZoo, natasha, Donna M.

Skin Cancer Skyrockets as Sunscreen Use Increases

The first tanning lotions were introduced around 1930. The goal was to allow you to stay in the sun longer without burning. A few years later, the melanoma rate began to rise. By the 1960s there were dozens of tanning lotions on the market. Melanoma rates continued to rise.

As the rates of skin cancer increased, it became news. And the makers of tanning lotions saw an  opportunity. They repositioned their products as "sunscreen." After that, the sales of sunscreen continued to climb... along with the rates of melanoma. In fact, the per capita melanoma rate has increased 1,800 percent since the first commercial sunscreens were introduced.

In a moment, you'll see why sunscreen is a contributing cause. But first, let's examine the evidence that sun exposure is actually your best defense against this deadly disease...

Please click here to read the rest of this article.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Replies 13
Last reply 7/21/2012 - 1:39pm

My daughter is currently planning to joinIng the current Stage 3 Yervoy trial, assuming we are lucky enough to get it. We have two questions for current  participants:

1) She just got a second opinion and we learned that the trial dosage of ipi is a lot higher than the approved dosage used to treat Stage 4, making it quite a bit more toxic. 15% supposedly get a severe reaction. Has anyone experienced this and had to drop out because of the toxicity?

2) We have heard so many stories on this site from people who took lnterferon and relapsed during the treatment or shortly after. This is one factor in my daugther choosing not to take it. We haven't come across any similar stories for the ipi trial participants. Since there isn't data available yet on relapse rates, we'd appreciate hearing about relapses during or after ipi treatment, or better yet, hearing about staying NED after treatment.

Thanks for any information you can share with us.

BC

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shannonwittgruber's picture
Replies 2
Last reply 7/21/2012 - 4:23am
Replies by: shannonwittgruber, Fen

Quick history: Dad has Stage IV melanoma in his spine, lungs, breast and kidney. This is dad's 3rd recurrence since his original DX in 2007. Currently severe compression in the spine. Surgery last week to reduce the size of the tumor that was fairly unsuccessful because of perfuse bleeding once they got to the tumor.

My Father had zelboraf delivered to his home today and the instructions say to start taking it....
Dad Is on Paxil (antidepressant) and we have been warned of the interactions with these 2 meds. The withdrawal from paxil is just awful and dad is really scared and lost as far as what to do now. Been trying to get ahold of the Family DR and Pharmacist all day and we have gotten no answers.
Wondering if anyone has been through a similar situation or knows what to do here. Also wondering if Dad can be put on another Anti depressant that wont interact with the Zelboraf and lessen the withdrawal symptoms of the paxil.

I already tried the manufacturer and got nowhere because im not in the USA, the Canadian rep has no answers.

Please respond if you know the answer or know how I can find out the answer. Also what Antidepressants can be taken with zelboraf?

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Nell's picture
Replies 1
Last reply 7/20/2012 - 3:50pm
Replies by: RMcLegal

Is Yervoy approved for use on stage III patients, or is it only being used in trials for stage III?  It doesn't seem like there is much available for stage III...

One voice can make a song; one life can change the world.

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Ali's picture
Replies 12
Last reply 7/20/2012 - 3:08pm

Hi guys.  I had my first dose of Yervoy and Temodar three weeks ago (after completing 6 weeks of IL-2 and the discovery of brain mets).  6 days after the infusion I developed some pretty miserable diarrhea.  At the same time, I could feel my subcutaneous tumors shrinking.  I did end up going on steroids, from which we are in the process of tapering off of. 

I went to the Dr. this week so excited to show him the tumors that were so ugly (visible and black) are now nothing more than tiny tight seeds that you had to dig deep to find.  The biggest one in my breast you can't find at all.  I do have a few small ones hanging around, but the biggest news is, I haven't felt anything new in the last 3 weeks (that has not been the pattern).

I assumed this was the Temodar at work, as I understood IPI takes a while to kick in.  When I mentioned this he said the Temodar isn't that potent of a chemotherapy, that this is likely a reaction from the IPI.  AWESOME!!!  Now I just need to be able to wean from the steroids and we try again in a few weeks, and hope that what is happening on the surface is happening all over, brain included. 

I have scans again in September.  There was a point I didn't know if I would ever see a September.  What a roller coaster! 

Thanks for all your courageous examples. 

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Lisa13's picture
Replies 11
Last reply 7/20/2012 - 1:03am

Next week, I'll be having my first craniotomy.  For those who've experienced them, how long does it make you feel better? 

Many impossible things have been accomplished for those who refuse to quit

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AZ_Gal's picture
Replies 3
Last reply 7/20/2012 - 12:17am
Replies by: gabsound, washoegal, AZ_Gal

I had my WLE and LB on Aug 5th, 2011 and almost a year later I am cancer free! YAY! However, I have some sort of cyst or fluid filled pocket in the incision where my WLE was. My PCP doesn't seem to be bothered by it and I see my Derm this coming Monday. I am supposed to be seeing a Derm every 6 months but because I live in an extremely remote area I have yet to see one since my surgery last Aug. (2011) Just wondering if any of you had ever had this problem, or heard of it. Hoping it's just fluid buildup but a little nervous. ANy help is appreciated...THANKS!

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john partrick michael murphy's picture
Replies 10
Last reply 7/19/2012 - 10:24pm

I know I am just a piker compared to many of you, but it is a grand feeling to make it this far. I still have one tumor in my lungs, but it has shrunk 92% in a year and a half. Also I am now a proud member of the 500 plus minutes in the MRI cigar tube for all the brain scans. No new mets have been found since I started treatment at MGH in Boston. If we keep our hope, we will keep our strength.

The history of the world is the battle between superstition and intelligence.

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Nell's picture
Replies 6
Last reply 7/19/2012 - 6:33pm
Replies by: Nell, Ali, Anonymous

I have heard that local reoccurances at the primary site are common....but do they worsen the prognosis as far as metastasis to organs go? My Dr. did not change me from stage 3, but I am wondering if there may be more liklihood of further spreading because of these local reoccurances. Almost afraid to ask...don't want to borrow trouble, but thought someone out there might have experience ....

One voice can make a song; one life can change the world.

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Hello all,

Just a reminder for any mel survivors and caregivers in the central Ohio area. The James Cancer Center in Columbus now has a melanoma survivors group which meets the 3rd Wednesday of each month at 6 p.m. @ The Stephanie Spielman Breast Cancer Center.

(Search "JamesCare for Life" to get more info on this and other great cancer support groups)

Oncologists specializing in the care, treatment, and research of melanoma are frequent guests. A symposium in conjunction with MRF just started this past May and  is planned to be an annual event for those in the Ohio melanoma community.

It's just another great way to receive support from those who understand what you're going through.

Hope to see you there!

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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davidfromsingapore's picture
Replies 9
Last reply 7/19/2012 - 4:50pm

Hello melanoma patients and care givers.  I am stage 4 with mets to the brain.  Just started Temodar and whole brain radiation today.  Any of you out there have some good stories about durable responses with this combo (I hope)?

David

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

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Replies by: Ali, awillett1991, LynnLuc

Wayne and I just returned from his check up appointment.   Only did lab, - saw Derm and saw Dr. B. 

He said he had just returned from a huge conference (do not know if it was OSCO or not) - but they were discussing what to do with patients who had a complete response with ZEL, like Wayne did.  

He said only about 4% of people have this kind of response, but they now do not know really what to do with them.     They are working on a protocol about this very thing and how long a patient should keep taking the ZEL.

Also, they are talking about doing a trial for a PREVENTON drug foro Melanoma mets.   That's all we found out at his point.   In the meantime, Wayne will continue with the full meal deal (4 tabs twice a day) and visit MDA every month -

doing PETS - CATS - ETC. every other month.

This was very, very encouraging to us.    WOW.......a preventive med !!!.  How awesome would that be !  He was very in earnest as he talked to us wanting us to understand these things.....but that he must continue on as he is now -

and we want that very much  TAKING NO CHANCES !   :-)

Just thought I'd share this bit of info we got yesterday at MDA.

Nancy (devoted wife of 3X 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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Nell's picture
Replies 5
Last reply 7/19/2012 - 11:20am
Replies by: Ali, lhaley, Nell, gabsound, LynnLuc

I had a primary melanoma removed from my chest 22 years ago...This January a lymph node appeared in the right axilla. It was removed along with 9 other benign lymph nodes...Since June ..in the last 7 weeks, I have had 3 separate melanoma nodules appear in the right axilla..the 3rd one to be removed tomorrow.  I have a specialist who says radiation is not effective, yet I have read articles saying something different...My scans show that at present the melanoma appears to be confined to the right axilla....What about radiation??  Anybody have a similar experience??

One voice can make a song; one life can change the world.

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Anonymous's picture
Replies 16
Last reply 7/19/2012 - 11:13am

Hi Everyone,

I visit MPIP , as well as, MIF to gain as much knowledge as I can on Mel. 

For what it is worth, I have noticed an increase in brain mets recurrences from people that post on the BB. Also, there seems to be a trend from people that have taken BRAF & Mef inhibitor drugs.

Maybe I am wrong, but if anyone has taken BRAF & MEK, it might be interesting to post whether or not you have a recurrence with brain mets & how long you have taken BRAF orMEK drug.

Just a thought..anyone have a opinion about Recurrences with  brain mets from BRAF/MEK Drugs?

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