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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Everymoment's picture
Replies 11
Last reply 8/16/2010 - 11:35pm

Hi,

As you all know, I have had four melanomas and a SNB, all clear and still stage 1. I was a pretty balanced person before this, no pills or alchohol or really anything. All my friends used to joke that I was "naturally high." Since my last melanoma over a year ago, things have started to change. Not only I am on Cymbalta, at a high dose, but I am now drinking like a fish. I am also using food as an addiction. What happen to the balance! Has anyone else gone through anything similar?

Everymoment

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ipi in DC's picture
Replies 12
Last reply 8/15/2010 - 10:23pm

Hey everyone,

I went for two month scans last week at MD and was upstaged to stage 4. Dr Bedekian gave me my options and I am going for the IPI and Temador they have started. Luckily my insurance is paying for it with a $100 copay on the Temador. I will have a IV for 90 minutes for the IPI and take the Temador one pill a day for four days at home. And repeat every three weeks. They will do scans at six weeks (two doses) to see if it is working and to go further or stop if no responce. 

I would love any thoughts, concerns or advice for these drugs and their side effects.

Thank You,

David

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/1/2010 - 11:42am
Replies by: ValinMtl, Anonymous

I am trying to get used to the new board format....not too crazy about it as some things are not working. The Expand All option doesn't work and closes  my browser - Explorer 8.0.

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I am beginning to like the new BB but would really like to see a few additions..the ability to click to left of board and go straight back to bulletin board after reading.  Would like to see longer pages...too few reads per the page, hate having to click to the next and then the next...would it be possible to lengthen taking out the info at bottom of page "Learn More"...isn't it up at the top already?  Val

Live Laugh Love Nothing is worth more than this day!

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ValinMtl's picture
Replies 1
Last reply 8/1/2010 - 9:01pm
Replies by: Alicia15

I am beginning to like the new BB but would really like to see a few additions..the ability to click to left of board and go straight back to bulletin board after reading.  Would like to see longer pages...too few reads per the page, hate having to click to the next and then the next...would it be possible to lengthen taking out the info at bottom of page "Learn More"...isn't it up at the top already?  Val

Live Laugh Love Nothing is worth more than this day!

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Just checking to see if anyone has heard how the little girl Kadynce's check up went?  I did check her caringbridge site but there wasn't an update.  Thanks!

You don't know what your future holds but you know who holds your future!

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Lori C's picture
Replies 6
Last reply 8/2/2010 - 6:53pm

Will is now about 11 days post chemo (carboplatin and taxol, to hopefully reduce tumor burden and allow him time to participate in a better treatment, perhaps Oncovex if we still cannot get ipi).  His main problem is extensive liver tumors.  However, he had a number of skin lesions that had shown up since April - bumps on his head and two on his face.  Since the chemo, all the sub Qs seem to have reduced significantly or disappeared.  I know one cannot extrapolate response to other organs, but would this indicate these tumors are responding to the chemo?  They also went down fast after the biochemo (but that was so toxic it was stopped after 2 rounds - and the tumors returned just as fast as they'd disappeared).  Are sub Qs just more responsive to treatment?  

For what it's worth, Will has been feeling quite good the past week.  I have not seen much of any side effects from the chemo - mild fatigue but he's actually feeling better now (he's on better pain management for hip mets) and has been walking further and more than he has since April.  His appetite is good - no hair loss - no other apparent effects.  In fact, I would say he's actually feeling overall better than I've seen him feel since perhaps March.  His quality of life/performance status is considerably improved.  It could be the pain management but perhaps it is also the chemo - I guess only the scans will tell.  His former oncologist painted an extremely bleak picture three and a half weeks ago - basically suggested things may be hopeless and would go quickly downhill.  And obviously it's far too early to tell - but I was expecting things to be much worse - and today we were out having coffee and donuts and chatting like we did before he became so ill.

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Jim in Denver's picture
Replies 7
Last reply 8/9/2010 - 1:09pm

 I have been meaning to post, but have had a busy July with family.  I have not posted since late May, I think.  I have waited until I have news to report, so here it is!

As background, I was diagnosed in March this yearas Stage IV with lung mets, no primary identified then or since.  Tested negative for BRAFe, k, and g. Limited treatment options locally, so went to MD Anderson almost 3 weeks ago for 3 days,  My Onc there is Dr. Wen Jen Hwu.  I am extremely impressed with MDA - a large operation, but very personal and caring.  Scans showed barely measurable growth in lung mets, since they are barely measurable in the first place (.5 cm).  Dr. Hwu said the mets may not have grown at all over the 3 months since the first scan.  MRI of brain also negative.  She offered me the opportunity to enroll in the Ipi/Temador Trial at MDA, which I gratefully accepted.  She answered all my questions over about an hour about the trial, and I spent around another hour with her our first appointment.  Had a small tumor removed from my left shoulder that appeared about 8 weeks ago, but Dr. Ross left another on on my left thigh to use for measuring possible progress from treatment.

So Tuesday I will travel to Houston with my wife for two days to begin treatment.  The Ipi part is "high dose" - 10mg/kg.  The Temodar is oral chemotherapy taken over 4 days of each 3 week cycle.  The treatments are scheduled for every 3 weeks for 4 cycles, or a total of 3 months.  Scans are done at 6 and 12 weeks.  Maintainence can occur indefinitely if there is a benefit to the initial treatment, on a reduced frequency schedule.  Current research on Ipi is focused on using it in combination with other therapies that have shown effectiveness.  The idea is that there should be at least an "arithmetic" benefit to such a combination (i.e. 1+1=2) but possibly "geometric" benefit (e.g 1+1=3).  This is the purpose of this study.  High dose Ipi has more side effects than the lower dose (3mg/kg - available in the Compassionate Use Study), but also higher efficacy.  The side effects to both treatments should be manageable, but the list of possible ones is long.  I have read here today and in the past about side effects for each drug seperately, but will post again about how everything is going as we go forward.

My kids are at camp this two weeks, so no family issues with my first treatment.  My wife will be with me for the first treatment, and she has arranged family leave.  Our insurance (though her work) and her benefits are very good, so we are fortunate in that regard. I just spent time with my Mom and my sister and her family during vacation.  I emailed them a couple of weeks before that to let them know about my diagnosis.  They have taken the news pretty well, I think, and now understand that I have a good plan to fight this disease.  My wife and kids are encouraged, as am I, by my initial visit to MDA. I will need to tell friends here very soon since my hair may soon be a slightly different color (white!) and I will be a regular visitor to Houston for the forseeable future.  

So that is my story for the recent past, in a nutshell.  I am encouraged somewhat that the disease has not progressed much, if at all, since initial diagnosis in March.  Although my work with the U of Colorado over 3 months did not yield any results, the time spent there has not harmed me either. MDA will keep my Onc at CU informed by email about significant developments in treatment, and they will be my local backup if needed.

In the meantime, I apologize for not keeping in better touch with those of you who have become friends and correspondents through this Board.  You have helped me sustain a positive attitude and sense of humor about this disease, as well as helped with information.  I will write when I can, but may resort primarily to posting here, depending on my energy level this week.  Thank you all for your support, good wishes, and prayers - they have helped us more than you can know.

 

Many Thanks,

Jim in Denver

 

 

 

 

 

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Jim in Denver's picture
Replies 7
Last reply 8/1/2010 - 11:23pm

 I have been meaning to post, but have had a busy July with family.  I have not posted since late May, I think.  I have waited until I have news to report, so here it is!

As background, I was diagnosed in March this yearas Stage IV with lung mets, no primary identified then or since.  Tested negative for BRAFe, k, and g. Limited treatment options locally, so went to MD Anderson almost 3 weeks ago for 3 days,  My Onc there is Dr. Wen Jen Hwu.  I am extremely impressed with MDA - a large operation, but very personal and caring.  Scans showed barely measurable growth in lung mets, since they are barely measurable in the first place (.5 cm).  Dr. Hwu said the mets may not have grown at all over the 3 months since the first scan.  MRI of brain also negative.  She offered me the opportunity to enroll in the Ipi/Temador Trial at MDA, which I gratefully accepted.  She answered all my questions over about an hour about the trial, and I spent around another hour with her our first appointment.  Had a small tumor removed from my left shoulder that appeared about 8 weeks ago, but Dr. Ross left another on on my left thigh to use for measuring possible progress from treatment.

So Tuesday I will travel to Houston with my wife for two days to begin treatment.  The Ipi part is "high dose" - 10mg/kg.  The Temodar is oral chemotherapy taken over 4 days of each 3 week cycle.  The treatments are scheduled for every 3 weeks for 4 cycles, or a total of 3 months.  Scans are done at 6 and 12 weeks.  Maintainence can occur indefinitely if there is a benefit to the initial treatment, on a reduced frequency schedule.  Current research on Ipi is focused on using it in combination with other therapies that have shown effectiveness.  The idea is that there should be at least an "arithmetic" benefit to such a combination (i.e. 1+1=2) but possibly "geometric" benefit (e.g 1+1=3).  This is the purpose of this study.  High dose Ipi has more side effects than the lower dose (3mg/kg - available in the Compassionate Use Study), but also higher efficacy.  The side effects to both treatments should be manageable, but the list of possible ones is long.  I have read here today and in the past about side effects for each drug seperately, but will post again about how everything is going as we go forward.

My kids are at camp this two weeks, so no family issues with my first treatment.  My wife will be with me for the first treatment, and she has arranged family leave.  Our insurance (though her work) and her benefits are very good, so we are fortunate in that regard. I just spent time with my Mom and my sister and her family during vacation.  I emailed them a couple of weeks before that to let them know about my diagnosis.  They have taken the news pretty well, I think, and now understand that I have a good plan to fight this disease.  My wife and kids are encouraged, as am I, by my initial visit to MDA. I will need to tell friends here very soon since my hair may soon be a slightly different color (white!) and I will be a regular visitor to Houston for the forseeable future.  

So that is my story for the recent past, in a nutshell.  I am encouraged somewhat that the disease has not progressed much, if at all, since initial diagnosis in March.  Although my work with the U of Colorado over 3 months did not yield any results, the time spent there has not harmed me either. MDA will keep my Onc at CU informed by email about significant developments in treatment, and they will be my local backup if needed.

In the meantime, I apologize for not keeping in better touch with those of you who have become friends and correspondents through this Board.  You have helped me sustain a positive attitude and sense of humor about this disease, as well as helped with information.  I will write when I can, but may resort primarily to posting here, depending on my energy level this week.  Thank you all for your support, good wishes, and prayers - they have helped us more than you can know.

 

Many Thanks,

Jim in Denver

 

 

 

 

 

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Jydnew's picture
Replies 9
Last reply 8/2/2010 - 2:43pm

Hi all,

Just coming back to the boards (wow, have they changed!) because my husband has his annual scan tomorrow, and oncology appointment on Wed.  His bloodwork came back fine already.  If all is clear, he will be 8.5 years past his initial diagnosis at stage iiia.  Boy, the anxiety never goes away, but since clear scans have been the norm, it's not terrible.  Last year, they found a little nodule in his liver, that turned out to be benign on further scans 3 months later.  I'm anticipating a repeat of last year - finding something - but hope it too is benign.  Last year, they did a more detaile CT scan rather than the PET/CTs he had gotten each year prior, so new stuff shows up, I guess.

Here's hoping and praying for good scans...

Wendy

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Replies by: Anonymous, sarah.e.lindsey, FertilityDoc

I am 4 years post treatment and surgery for stage 3 melanoma. I've completed 4 weeks of Interferon, a lymph node dissection and a wide excision with a snb. I have had negative scans since 2006. My husband and I are considering adding to our family, but are unsure of the risks involved with reoccurance. If anyone has any ad vice, I would greatly appreciate it!! Thanks.

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bill58's picture
Replies 1
Last reply 8/2/2010 - 1:03pm
Replies by: lhaley

I just ran across the following link to a new showtime series about a women who was diagnosed with stage IV melanoma.

 

http://mobile.latimes.com/wap/news/text.jsp?sid=294&nid=17575804&cid=16698&scid=1857&ith=0&title=Entertainment

 

Reporting from Stamford, Conn. —-- Laura Linney wasn't looking to do a television series when the pitch came in from Showtime last year.

 

 

"I was just sort of going about my life, and series television had never been in the equation," said the 46-year-old actress, best known for her work in theater and independent films such as "You Can Count on Me" and "The Savages." "It's too tame most of the time."

 

 

But the script sent over by Robert Greenblatt, then the network's president of entertainment, was certainly not cautious material. It centered on an uptight suburban teacher who had just been handed a terminal cancer diagnosis. Oh, and it was a dramedy.

 

 

Linney was intrigued. "It was just dealing with all the questions and issues that I had been encountering on a daily basis," she said on a recent afternoon, sitting in her sparse dressing room in a low-slung industrial building that houses the set for "The Big C" on the edge of downtown Stamford. When asked to be more specific, she paused for a long time, staring off into the distance.

 

 

"Time," she said simply, focusing her intense blue eyes on her guest. "What it is and how much do we have and what do we do with it. Really something that highlighted the privilege of aging."

 

 

Linney cringes a bit at the moniker "cancer comedy" that has been affixed to "The Big C" but admitted that "there is something wonderfully impossible about the idea of a show that is comedic that deals with cancer. I tend to choose stuff that's not that easy to pull off."

 

 

She has plenty to grapple with in the 13-episode Showtime series, which premieres Aug. 16. When we meet her character, Cathy Jamison, she seems shaken awake by the news that she has Stage IV melanoma. Instead of sharing the diagnosis with her fun-loving but flighty husband ( Oliver Platt), from whom she's recently separated, she begins to act out in ways startling to herself and the people around her, including a hard-to-reach student played by Gabourey Sidibe.

 

 

It's the latest unorthodox dramedy to be picked by Showtime, which has carved out a distinctive niche with a slate of programming that marries dark themes with wry comedy. "The Big C" joins three other series fronted by flawed, impulsive women: "Weeds," "Nurse Jackie" and "The United States of Tara."

 

 

Whether viewers have an appetite for another quirky character behaving in an outre fashion remains to be seen. And launching a show with cancer as the driving narrative force presents its own hurdles. The cable channel has taken a typically irreverent approach in marketing "The Big C": Promos feature Linney sipping a cocktail as she lounges next to a sandcastle inside an hourglass, using a beach ball to try to stop the sand from draining away.

 

 

"I think the lead character is a classic Showtime character," said Matthew Blank, the network's chief executive. "When you say 'challenging, risky endeavor,' we say, 'Yeah!' If we're able to do it successfully, it just keeps pounding home what premium TV is supposed to be."

 

 

Cancer is a well-worn trope on television dramas, so much so that the disease almost feels ubiquitous in prime time. Major characters on "Brothers & Sisters," "Grey's Anatomy," " Lost," " Breaking Bad," "Desperate Housewives" and "90210" have all coped with cancer in recent seasons.

 

 

But it is far rarer to find a comedy that has tackled the topic. "All in the Family" ventured into the terrain with a 1973 episode in which Edith found a lump in her breast. One of the few sitcoms to do so since then was "Murphy Brown," whose protagonist, played by Candice Bergen, battled breast cancer in the show's final season. "There haven't been a lot, for obvious reasons," said Marc Flanagan, who was the executive producer of "Murphy Brown" then and recalls that the writers took great pains to find the right balance of pathos and humor.

 

 

"I think when people hear 'cancer comedy,' their antennas go up and they say, 'Wait a minute, there's nothing funny about cancer. There's nothing funny about dying,'" said Jenny Bicks ("Men in Trees," "Sex and the City"), executive producer and show runner of "The Big C." "But the truth is, there's a ton of high comedy inherent in any situation where you're right on the line. There's a very fine line between tragedy and comedy, and they cross over a lot."

 

 

Bicks knows firsthand: She successfully battled breast cancer a decade ago. She channeled the experience as a writer on "Sex and the City," penning the story about Samantha's bout with breast cancer, and was drawn to the opportunity to write about it again in a comedic vein.

 

 

"I thought this was such a great way of using it and finding the voice to tell it that doesn't feel maudlin or bad-TV-movie," she said.

 

 

While the show has a lighthearted tone, the story line is still undergirded by medical research. An oncologist from City of Hope consults on the script, and all the shows' writers are either cancer survivors or have loved ones who have battled the disease.

 

 

Bicks envisions each season reflecting one of the five stages of grief, the first being denial.

 

 

"I anticipate people will feel uncomfortable, and they should, in some ways," she said. "We are not going to take the safe route through telling this story. We're not going to make believe that there's a magic bullet that's going to cure her. But at the same time, we're not going to shy away from her doing some fairly outrageous things because of the situation she's in."

 

 

For her part, Linney said she hasn't been preoccupied with calibrating the right balance between humor and drama.

 

 

"I think there just has to be a trust of the universal thing that people hook into about how helpless we all are in the running out of time and how we desperately try to fight it — there's something comical just in that," she said. "Just that crazy hubris can be downright entertaining."

In the premiere, Cathy impulsively decides to dig up her lawn and put in a swimming pool and tells her bewildered husband that she is no longer willing to forgo eating onions because he hates them.

 

 

Her cast mates say that Linney brings warmth to a character that, in someone else's hands, could be brittle and polarizing.

 

 

"She's highly relatable, and I just think there's a goodness to her bandwidth that allows her to get away with things," Platt said.

 

 

John Benjamin Hickey, a veteran stage actor who plays Linney's sometimes-homeless brother and has known her for 20 years, said she brings new dimensions to roles through her approachability.

 

 

"Laura has an incredibly subversive and very sophisticated and very snarky sense of humor," Hickey said. "She knows how to find in a character the deepest, warmest colors and also knows how to turn them to ice in a second."

 

 

Linney's participation in "The Big C" — she's also one of the executive producers — has drawn in other A-list talent, including Cynthia Nixon, who guest stars as Cathy's wild college roommate, and Liam Neeson, who will play a beekeeper whom Cathy consults about alternative treatments.

 

 

The actress, whose previous television work has included the acclaimed miniseries "Tales of the City" and " John Adams," said her first time as a regular on series television has been a powerful experience.

 

 

"More than any other thing I've ever done, this is work that comes home with me," Linney said. "That's never happened on anything I've ever done."

 

 

If viewers embrace the show, she's eager, she said, to continue in the role.

 

 

"People are here for bigger reasons other than a job," Linney said. "Everybody knows that it's about life."

 

Bill from Illinois Stage IV Spine Mets, brain mets ans subq mets. starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

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SusanE's picture
Replies 5
Last reply 8/2/2010 - 3:29pm
Replies by: Tim--MRF, SusanE, Sharyn

Is there anyone here who has either considered or who has had their limb, specifically leg in our case, amputated?

In our case, Jerry's started on his toe, had toe amputated, local recurrence, had Isolated Limb perfusion, then intransits after, then tumor in thigh, started chemo, seem to have had another tumor pop up this weekend. In addition to the melanoma problems, Jerry's foot has not healed since the limb perfusion 10 1/2 months ago, and he is dealing with osteomyelitis in the foot, very limited feeling and movement in the foot, etc. We just don't know if he will ever have normal feeling and movement ever again. So far the melanoma has been isolated to the limb, and it won't leave the limb alone.

Trying to decide what to do.

Thank you for any thoughts,

Susan

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I have had two requests for patient input.

First, a group is studying how patients receive information.  They are looking for 3-4 people who can come to downtown Philadelphia tomorrow (!), Tuesday, for a one-on-one interview that will last about an hour.  They will pay a stipend.

Second, a national reporter is looking for patients on the Phase III study of the Roche/Plexxikon B-RAF inhibitor.  This would involve a brief phone interview about your experience on the trial, and does not offer any compensation.

If you are interested please let me know ASAP:

tturnham@melanoma.org

Thanks,

 

Tim

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debbieVA's picture
Replies 18
Last reply 8/3/2010 - 12:42pm

 MPIPers...

It's that time again.... happy and blessed to say ...ALL's CLEAR.  Been a long journey since 2006, but thrilled to remain NED and Healthy! 

The important take away is....always have hope.  Never give up.  I can still picture my Medical Oncologist at Johns Hopkins telling me I had '6-9 months, Stage 4 prognosis usually under a year'..and all he offered me was a vaccine trial.   I have exceeded my 'expiration date' by 34 months and remain NED.  

Always be your own ADVOCATE.  Find alternatives, go for the 2nd, 3rd, and 4th opinion.  Don't stop until YOU are ready to stop.  Be the Captain of your medical team.  Find a Melanoma Specialist to Co-Captian and the rest of your support team will fall in place.  

Wishing you all good health and happiness...

 

Debbie Stage 4 NED (IL-2 Complete Responder, 57 infusions 2007-2008)

PS....Like the set up of MPIP BB....looks good !

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