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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acyr's picture
Replies 12
Last reply 5/30/2011 - 9:02pm

I don't know if any of you have had an update on Sharyn lately.  I shared an e-mail with her hubby who is overwhelmed at the moment and obviously scared of what the future holds for our dear Sharyn.  He let me know what she had been removed from the Ipi trial as she has progression with brain mets.  She is having difficulty and hasn't been able to get on her computer.  I know Jim didn't want to be hit by a barage of e-mails, but thought that some of you would want to know.

Sharyn is a real trooper and has been such a positive influence on this board and our discussion forum in Canada.  I can say how many times she has reached out with information and support for others.  I know I don't have to ask all of you long-timers on here - but if you can put her in your thoughts and prayers and we will continue to hope that she bounces back from this as she has done from every other hurdle.

 

Annette  IIIb

Melanoma Network of Canada

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boot2aboot's picture
Replies 17
Last reply 5/30/2011 - 7:00pm

is it JUST me or does choosing a therapy like playing darts on a dart board...you get a certain number of darts and then try for a bulls-eye...and all the while your body gets...torn down....

i am starting biochemo june 2 as adjuvant therapy and i am still questioning my decision...but clinical trials for adjuvant therapy sucks too...and delayed...i really feel frustrated with researchers right now...i almost wish they could try their own cocktails...i met some of those...researchers... and my impression is EGO MANIAC...i left one and told him he could 'play with his own life' cause he wasn't getting mine for his gold star....

it seems to me all those 'brilliant scientific types' could come up with a way to test the TUMOR instead of the PERSON for chemicals or vaccines that would be effective for the type of Melanoma...genetically speaking...

it just seems to make sense 

i am very frustrated and saddened by the comments on this board...so many people throwing the darts but no bulls-eye...it just...sucks and i am blaming ego driven researchers for this....

boots

3c

don't back up, don't back down

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Terra's picture
Replies 3
Last reply 5/30/2011 - 6:03pm

Does anyone have any comments or knowledge on TIL or IPIand brain mets. 

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emlauritsen's picture
Replies 8
Last reply 5/30/2011 - 5:30pm

I'm 5 years post stage 1b and will be having my yearly derm exam in July. I've changed doctors so I'm not sure which blood tests are used in addition to the exam. I don't see an oncologist any longer since the SNB was negative and my primary care doctor will fill out the lab request form but she was puzzled as to what tests to order. What blood tests are used to monitor for signs of recurrance or changes in a post melanoma patient?  I'm not sure I'm asking this right, so in other words what blood tests should my PCP order?

Thanks!

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kbc123's picture
Replies 13
Last reply 5/30/2011 - 3:20pm

There has been so much negative, not so great news on here lately that I am finding myself getting depressed reading.  I read about this stuff and I pray for them.  I look into their files and see where they started, where they are now, what they treated with, hospice or no hospice.  And then I pray for them again.  A total depressed stage I have been living in...

Then I thought to myself, I AM doing well.  I HAVE no distant disease (God willing that will stay that way ).  Being Stage   3-A ( wishing I was 2 or 1)  is not so bad! 

My baseline scans are clean.  My three month check up with my surgeon was Monday and I am doing fine.  No lumps, no symptoms, no nothing.  Just the same ole me, with a diagnosis of MELANOMA... A melanoma survivor!

So that being said, I am going to finish my work today, I am going to get out in that humid air, sunny day (of course with loads of sunblock and a hat!) and I am going to have a fabulous Memorial Day Weekend.  I pray for the same for all of you  !

Peace and Love to all -

Kathy

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kylez's picture
Replies 7
Last reply 5/30/2011 - 3:17pm

After 6 months of stability my brain mets came back this week. Going in for more resection next week.

In terms of clinical trials, it's frustrating that brain mets remain a forbidding zone where research and trials fear to tread. As far as systematic approaches, my body is on it's own. No body mets sounded great, but also has precluded me from any trials that might have somehow helped with cranial mets too.

I don't know if anybody looks at melanoma subtypes for brain mets. I guess if there's nothing to do, there's no reason to ask that question.

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Rendergirl's picture
Replies 7
Last reply 5/30/2011 - 2:26pm

My mom is worried about all the scans I'm getting. PET/CT, MRI, X-rays, etc... I told her the doctors wouldn't let me have all those scans if they didnt think it was needed. She's scared of them causing cancer... I already have cancer...lol. I told her I'm sure they weigh the benefits against the risks and at this point I need the scans.

Anyone know how many scans are a safe limit?

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Nebr78's picture
Replies 5
Last reply 5/30/2011 - 12:47pm
Replies by: nicoli, Nebr78, lhaley

I have had just two sessions of radiation on my spine.  Melanoma has eaten part way into the spine and also is up against the aorta????

Last night my stomach started burning and burning and couldn't get it stopped.  As I am also on light dose of chemo  I took an nauea pill as Pepsid AC, Pepto Bismo, etc.     Finally about 2:30a.m. I woke up and it had stopped.  Stomach still feels somewhat sore but don't burn.

I am due to have another treatment in about 6 hrs.  Will call Dr. soon as is early yet.    I will check this forum frequently next 4-5 hrs.

HAS ANYONE ELSE HAD THIS KIND OF PROBLEM???

 

( i have been taking quite a bit of pain pill for the back and I do know they work on the stomach.  Appreciate any reply.

 

 

 

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Did you all see this article?

My Friend Marcia from International Cancer Advocacy Network (ICAN) just e-mailed it and thought someone might like it.
 

 

Roche Leads Deadly Skin Cancer Turnaround as Dozen Drugs Coming

By Robert Langreth and Michelle Fay Cortez - May 25, 2011 12:01 AM ET  
Cheryl Stratos, a Metatstatic melanoma patient began using the drug vemurafenib in an experimental trial in February 2010. Source: Cheryl Stratos via Bloomberg Cheryl Stratos says she was given only six to eight months to live by her doctors after melanoma, the deadliest of skin cancers, spread in her body.

Stratos, a 46-year-old from McLean, Virginia, who owns an advertising sales company, began using the drug vemurafenib in an experimental trial in February 2010. Last month, the tumors in her liver and lungs had become barely detectable, “giving me my life back,” Stratos said.
 
The treatment, from Swiss drugmaker Roche Holding AG (ROG) and Daiichi Sankyo Co. of Tokyo, is part of a revolution in cancer biology. Metastatic melanoma has long been a death sentence, killing 8,700 Americans a year. Now medicines from Roche, Daiichi, Bristol-Myers Squibb Co. (BMY) and GlaxoSmithkline Plc (GSK) are among a dozen in advanced testing that are starting to rewrite the prognosis for patients like Stratos.
“The science has exploded,” Stephen Hodi, director of the melanoma center at Dana-Farber Cancer Institute in Boston, said in a telephone interview. “We are entering a golden age of melanoma therapies.”
New drugs are giving researchers an unprecedented ability to combine treatments and prolong survival, Hodi said. While the therapies don’t provide a cure, they show how progress can be made by aiming at the genetics of tumors or harnessing the body’s defenses to fight off invading cancer cells.

Data on the newest melanoma drugs are among the more than 2,500 studies on cancer treatments that will be presented at the meeting of the American Society of Clinical Oncology that starts June 3 in Chicago.

$1.5 Billion in Sales

For pharmaceutical companies, success in melanoma also may lead to billions in sales. New York-based Bristol-Myers’s Yervoy, the first to extend advanced melanoma survival when it was approved March 25, costs $120,000 for a standard course of four doses and may reach $1.5 billion in sales by 2015, according to Bloomberg survey of four analysts.

Vemurafenib, the drug from Stratos’s trial, may generate 700 million Swiss francs ($796 million) in revenue by 2015, according to Jack Scannell, an analyst with Sanford C. Bernstein & Co. in London.

Roche, based in Basel, Switzerland, has submitted the therapy for regulatory approval in the U.S. and Europe. Doctors are set to report at the cancer meeting that vemurafenib helps patients with advanced melanoma live longer.

Glaxo, with three drugs in the final stage of development for melanoma, will present at the meeting one of the first studies combining two experimental medicines attacking different molecules that encourage cancer growth.

Combination Therapy

The study combines Glaxo’s GSK2118436 drug, which blocks one mutated protein that spurs melanoma’s spread, with a treatment that thwarts a related growth-promoting molecule to keep cancer from evading treatment, said Perry Nisen, a senior vice president at the London-based drugmaker.
The study may provide a clue to whether the approach to control resistance is viable, said Ramya Kollipara, an analyst at Decision Resources in Burlington, Massachusetts.

Survival from advanced melanoma may double over the next five years to ten years as new treatments come online, from 10 months to 20 months, said Antoni Ribas, an oncologist at the University of California, Los Angeles, who treats Stratos.

“There is no doubt that melanoma is the hottest cancer in oncology,” he said in an e-mail. “It is a triumph of science translated to patients with unprecedented benefits.”

The excitement is tempered by decades of failure. Until this year, there were only two approved drugs for treating advanced melanoma, and neither had been proven to prolong life. Melanoma drugs from companies including New York-based Pfizer Inc. (PFE), the world’s largest drugmaker, Bayer AG (BAYN) and Glaxo have stumbled in final development stages.

Chicago Cubs Fan

“Being a melanoma doctor is not unlike being a Chicago Cubs fan,” said George Sledge Jr., president of the American Society of Clinical Oncology and an oncology professor at Indiana University’s Cancer Center, referring to the U.S. baseball team’s 103 years without winning a World Series.

“For the first time, though, we have not one but two drugs that are moving the needle for melanoma,” he said of Yervoy and vemurafenib, the most-advanced treatments for skin cancer. “This is a sea change for the melanoma guys.”

The disease strikes 68,000 Americans each year, according to the American Cancer Society. While patients with early stage disease respond well to treatment, the five-year survival rate for those with cancer that has spread is 15 percent.

The new medicines have limitations. Yervoy has led to long- lasting remissions in a small minority of patients, and yet most patients don’t get dramatic benefits. It extended life by a median of four months in the trial that led to its approval, and can cause fatal inflammation of the intestine and other organs.

Beyond Expectations

Vemurafenib and Glaxo’s similar GSK2118436 have shrunk tumors at a rate “beyond our most optimistic expectations,” Ribas said in an interview. Yet patients on vemurafenib have often stopped responding after six or seven months, he said. The drugs are linked to an increased risk of other, less serious skin cancers.
Still, advances in melanoma show how researchers can make progress against even the toughest cancers by attacking tumors on multiple fronts, Hodi said.

Drugs like vemurafenib aim to slow cancer by hitting a mutation in a protein called BRAF that drives growth in half of all melanomas, including Stratos’s tumors. Yervoy and similar medicines in trials work indirectly by unleashing the body’s immune system to attack and kill cancer cells.

A crucial clue leading to vemurafenib and GSK2118436 came in 2002 when British gene researchers found that some patients had a mutation in the growth-promoting gene BRAF.

First Gene Aberration

“That was the first frequent genetic aberration in melanoma” that could easily be targeted with drugs, said Jedd Wolchok, a melanoma expert at Memorial Sloan-Kettering Cancer Center in New York, in a telephone interview. “The pharma companies really went after that.”

One company that jumped on the lead was closely held Plexxikon Inc. of Berkeley, California. The company was purchased Feb. 28 by Daiichi for up to $935 million.

Company scientists made a crystal structure of the mutant protein that enabled them to test it against potential compounds, and by 2005 had devised the drug vemurafenib that blocked it. Human trials with partner Roche began in 2006.

Three years later, an Internet search for a clinical trial brought vemurafenib to Stratos. After Stratos failed to qualify for trials of vemurafenib at Sloan-Kettering because she had not tried chemotherapy, her husband, Michael Stratos, called “every hospital” until he tracked down Ribas who was performing the trial at UCLA.

Stratos started on the medicine on Feb. 28, 2010, and has had side effects including a “horrible burning flaming rash all over” and flu-like symptoms, she said.

Two months later, the tumors had shrunk 30 percent on a computed tomography scan. They continued to gradually shrink and a PET scan last month showed virtually no activity in her remaining small tumors, Stratos said.

“It is amazing,” she said. “I am one of the lucky ones, one of the outliers it is working for long term.”

To contact the reporters on this story: Robert Langreth in New York at
rlangreth@bloomberg.net; Michelle Fay Cortez in Minneapolis at mcortez@bloomberg.net
To contact the editor responsible for this story: Reg Gale at rgale5@bloomberg.net
 

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Terra's picture
Replies 14
Last reply 5/29/2011 - 10:59pm

I guess I am just looking for words of encouragement.  Eght months ago when I found out I was pregnant and Derek was on chemo I knew it was not good at all.  He had made an appoint last summer for a vasectomy but canceled when he had to have lung suergery and I took birth control.  But there we were.  He didn't want to have it and understandably so he was on chemo and stage 4 and we have two young kids 4 and 2 now, but int he end I knew i couldn't have an abotrtion and felt very strongly that I was either going to kill him or kill the child with my decision/.  It has been a rough road, we didn't want three kids, now in a couple of weeks we wil have three kids and love them very much, but he is facing death and the stress of everything is weighing on him,.  Most of the time he is in a relatviely good frame of mind, we have continued help adn child care but I am worried.  His mother made comments int he beginning that I had maybe done this on purpose and recently members of his fmaily have made comments ab out how much stress this new baby will cause and that it is unthinkable this is all happening.  I really do at times blame myself and wonder how I will feel if he does die and how much of a part this new baby may have played and my decision to keep it.  I can't go back now, but knew I couldn't deal with losing them both and with having an abortion but I am having such an emotional time feelling guilt of what he isgoing thorugh.  I really hate life right now and can't heloing feeling responsible for his feelings of stress and his possible deteroiation with melanoma, which I know is happening hnow becasue he feels it.

 

Very very scared adn upset, Terra.

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Jewel's picture
Replies 12
Last reply 5/29/2011 - 9:07pm

Thanks to all of you ahead of time for taking the time to reply.

My husband was diagnosed in Nov 2010 with Stage 3 melanoma. While he has remained NED since I wake up everyday with the fear that today is going to be the day it spreads.....it is so frustrating because you have so few choices at this stage.  Just need some encouragement.

 

Thanks

 

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hi all got a ? my moms cancer is back this will be 4 times in the same foot.  they will want to amputate  but i think this will  kill my mom  , she has had a stroke that affected the right side the masses 3 of them r on the left, she has been getting blood transfusions for 2 years now 18 in all. fluid around her heart from cardiomyopothy.

 gues my ? is how long can she live doing nothing, we know its no\t in any major organs, not in bones or brain, thank you sheri from ohio

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hi all got a ? my moms cancer is back this will be 4 times in the same foot.  they will want to amputate  but i think this will  kill my mom  , she has had a stroke that affected the right side the masses 3 of them r on the left, she has been getting blood transfusions for 2 years now 18 in all. fluid around her heart from cardiomyopothy.

 gues my ? is how long can she live doing nothing, we know its no\t in any major organs, not in bones or brain, thank you sheri from ohio

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hi all got a ? my moms cancer is back this will be 4 times in the same foot.  they will want to amputate  but i think this will  kill my mom  , she has had a stroke that affected the right side the masses 3 of them r on the left, she has been getting blood transfusions for 2 years now 18 in all. fluid around her heart from cardiomyopothy.

 gues my ? is how long can she live doing nothing, we know its no\t in any major organs, not in bones or brain, thank you sheri from ohio

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/29/2011 - 7:37pm
Replies by: ValinMtl, lhaley, Anonymous

Hi Val,

Thinking about you and hope IPI is working for you. Please post and let us know how you're doin.

Postive thoughts & hugs are going out to you!

Jan

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