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.

Expand/ Collapse Topic
 
Replies By
View Topic
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

 

 

 

 

 

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

Gowri Sivaraman's picture
Replies 3
Last reply 8/3/2010 - 1:55am
Replies by: JerryfromFauq, Carver, akls

My father's pet scan results came out clean and the oncologist asked us to follow up with blood tests after 4 months. He has been on interfereon after his lymph node removal last year. This forum has helped in educating me what are the different options available. We think about everyday as a gift these days and i am happy for this moment even though i don't know what the future holds for my father.

 

 

Login or register to post replies.

DebbieW's picture
Replies 3
Last reply 8/3/2010 - 2:15am
Replies by: Nebr78, Kimmer, kwahlbin

This is really going to take some getting used to.  Do you have to go back after each series of posts on one subject?  I keep having to go back to the beginning to see the next post.  Is there a next button that I am missing?  I don't find this as user friendly or after 9 years I just knew what to expect on the old board.

Have a great day and NEVER give up.  Cancer really hates that!

DebbieW

9 years NED! 

Never give up!

Login or register to post replies.

Will be in the Colorado
Springs and Buena Vista areas for August and much of September.  Like to meet follow warriors in person.  Feel welcom to email me at tjellis@erols.com.

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

kwahlbin's picture
Replies 4
Last reply 8/3/2010 - 2:19am
Replies by: Anonymous, kwahlbin, ValinMtl

The bulletin board has been updated with new a new look and additional functions. To learn how to use the bulletin board and the new features, please see the Bulletin Board FAQs.

If you have additional questions, please contact us using the contact form.

Login or register to post replies.

I was wondering if we  had any other patients / lurkers / caregivers dealing with leptomeningial mets.  I know Kevin from Atl and I have them, right?  Hope you're doing well Kevin - I'd love an update when you feel like it.  We can compare notes on my intrathecial IL2 vs. your ipi plan.  Have you been able to continue that in TN?

I am still at once a week rounds (one day admissions inpatient each week for the dose).  But I am getting close to moving to once every two weeks.  At least that's MY plan, lol.  Dr. Papa may have other ideas.  I know he's had a crop of patients who have had some success with this.  I'd love to hear from some others who have done this.

The treatment is definitely tolerable in comparison to bio chem.  Of course with bio chem as the standard by which all are judged it's pretty hard to imagine ANYTHING that wouldn't rate as "well, at least it isn't bio chem!".  I stay in patient for 23 hours and then have a few days at home as a vomitting, moaning vegetable, then a few days of more normal couch potato "at least she's here" kinda days.  Then if I'm lucky I have a day or two of "good" productive unmedicated days.  Just in time to start all over!  If I go to another week off then it will be great! 

Side effects are pressure headaches, muscle aches, severe dry mouth, vision changes, naseua, dizziness, etc.    Now I think it may be screwing with my hearing - everything sounds muffled, like when you water in your ears.  Or have ear plugs in so you hear your own voice REALLY loudly in your ears and have no idea if you're volume appropriate or shouting at people.

I am so thankful that this treatment seems to be working.  Last MRI showed some shrinking of the LMD and everything else is still stable.  No luck getting back on the GSK but so far so good with the other body systems.  So that issue is on the backburner for now.

Thanks again to all my wonderful MPIP buddies for yyour love, encouragement and prayers.  Sorry so bad about keeping my CarePage and facebook updated.  And don't even get me started on THIS debacle.  I'm trying to get used to it but hate all the changes and hope we can all keep each other up to date on the latest developments.

Love,

Amy

 

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

Login or register to post replies.

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 !

Login or register to post replies.

Fen's picture
Replies 4
Last reply 8/3/2010 - 5:22pm

 Yesterday I noticed the info to the left of the messages indicating how many people are online.  The number has varied from 50 to over 200!  I find this new format difficult to learn too, but so many of you have knowledge, insight and compassion - don't give up on the board.  Many people are counting on you.

Login or register to post replies.

Kimmer's picture
Replies 2
Last reply 8/3/2010 - 11:11pm
Replies by: King, Carver

I had the SNB/WLE and skin graft that, I think,  was the true beginning of  my journey through melanoma.  I remember finding the board and being too afraid to even look at the posts as I am superstitious beyond belief! 

SO six years, lost pathology, BCC, one recurrence, SCC, 2 atypical moles and dozens of biopsies have put me in place where fear is a bit of a more tame monster.  My dear friend, Carver, once said that somebody has to be on the good side of the statistics.  Goes to show how powerful words can be, 'cos that one kind statement gave me a completely different perspective.

In all honesty, I can say that this site helps people.  It is different now, but the fact remains that it is still here and there are still so many people here with so much to give. 

And I thank you all from the bottom of my heart for your support and friendship.

Take good care, K.

PS I recently created a profile for the first time...I always thought that it would make it all to real to have an archive or something...geez, superstition and all...  Amazingly, I didn't blow up.  Silly, silly me!

And remember, no matter where you go, there you are. Confucius

Login or register to post replies.

Pages