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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sheri47's picture
Replies 6
Last reply 5/31/2011 - 7:34am

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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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 7
Last reply 6/1/2011 - 3:16pm
Replies by: Carol Taylor, kfalkinburg, Anonymous, jackiewin

Has anyone got IPI (yervoy) paid for by their medical insurance company??

 

How diffficult was the approval process??? What medical Insurance company approved IPI??

 

Has Medicare approved IPI yet??

 

Thanks

Jamie

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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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I have been thinking about Rocklove & Jim from Denver because these 2 wonderful people always took the time to help other Mpiper's.

Anyone know how they are doing?

Doug

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leslieg's picture
Replies 2
Last reply 5/29/2011 - 3:40pm
Replies by: LynnLuc, washoegal

Lamotragine / Lamictal is an anti-epileiptic drug that is also used to treat bipolar. Users report many "skin oriented" side-effects, and it makes one more sun-senstitive. It is known to bind to melanin-producing areas (or some such). It can also cause a fatal rash (Stevens-Johnson syndrome.)

At the end of the summer of 2009 I started on a trial of Lamictal. I was on it for only a few weeks, as I thought I had too many skin-oriented symptoms and was worried it might be "the rash". My skin was simply looking different, most of my ketoid "scars" changed appearance. At least one of my moles did, too (it turned almost black -- but with the lamictal / melanin thing, I wasn't worried). I'm sure others changed but not in such a dramatic way. I believe I saw my derm. a few months after this, but I didn't point it out to her and she missed it. Then I went for too long, not getting back 'til two weeks ago.

Of course, the mole that changed was melanoma (in situ, yay!)

But I am also back on Lamictal because we haven't been able to find an effective drug for my bipolar depressions and if I can tolerate Lamictal, it can be a wonder drug for that purpose. I have been on it for a longer time now, and at a higher dosage than I managed before.

And boy, oh boy, is my skin changing again. I have many moles on my arms and shoulders, and I tend to stare at them when I am procrastinating. But I don't have a photographic memory or many photos of myself. It seems like most of them are changing, getting darker spots, being not-so-round ...

I've googled but not been able to find any association between Lamotrigine and melanoma.

Questions:

1. Has anyone heard of or suspected an association between Lamitrigine and melanoma? (Or do I just blame the melanoma occurance on the increased sun-sensitivity of the drug?)

2. Do I bug my derm. for an exam ASAP rather than wait 3 months? (She saw the suspicious spot before she'd done my full-body exam 2 weeks ago, and I could tell she was worried, so I know she looked at least a little more carefully than usual.)

I'll take pictures of the way-things-are-now, and I see my psychiatrist on Wed. We'll probably give up on this trial. I know it may seem that it should be a no-brainer to stop the Lamictal, but the risk of death in the depressive phase of bipolar is freighteningly high. 

I'm just so, so worried that there is more melanoma, or that I am making more right now.

Thanks for listening.

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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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glewis923's picture
Replies 3
Last reply 5/29/2011 - 6:58pm

Thnaks for ya'lls concern.....I was wondering if any one would ever miss me.  Seriously, I miss talking to the board and should not be so "wierd" sometimes.  I have been reading the board some; I hope your doin' fine.  I just feel so helpless at times about myself that I feel i have nothing to tell anyone else that won't reflect my own doubts.  SOoooo many people are in bad shape, and i don't know how to "fix" it - 

 

I completed round 4 of IPI,  a CT scan revealed "stable" with existing lung tumors, and no futher abdominal spread....so this is good news i suppose.  Kinda bad news is brain tumors- about 14 i think (were like 12, so 2 small new ones, which is dicouraging after WBR and SRS)-  but, the others are stable and a couple have shrunk a little.  I went through another round of 4 SRS (Novalis TS) to try to zap 2 resistant tumors again plus the 2 new ones.

 

Hope all is well with everyone.  Was quite saddenend by recent deaths of some board members.  Just been at a loss of words lately......Love, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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24hourmommy's picture
Replies 5
Last reply 4/10/2012 - 3:11pm

 I want to apologize if I don't use the correct terms or phrases, I'm new and would like to know if anyone has had endured the side effects of Ipi.

My husband was diagnosed stage !V metastatic melanoma in 4/2011. The pet scans show it's spread to his liver, spleen, lymph nodes, etc. We were told 4-6 months.

The good news is his MRI was clear and he is BRAF positve.

He had a small "mole" removed 10 years ago and would return for blood work every 6 months and was cleared and told it was all removed. In all honesty, I believed it was fine because he went to his dermatologist regularly and seemed on top of it. I can't give more details about the surgery 10 years ago (size of mole or diagnosis) because the records were archived and we don't have those reports. I am working on getting them.

He had his first Yervoy treatment with no side effects. He had his 2nd treatment  three weeks ;ater. Now.  he has been unable to leave the house for the past two weeks due to the diarrhea. He is taking lomodil and steroid for it but had to go in the hospital overnight for fluids last week. Since we came home Thursday, the diarrhea is still bad and he is so drained.

We are scheduled for the third treatment this Thursday but his doctor said he can't recieve it if we can't reduce the predisone and get the bowels under control.

He had such a positive outlook after he recieved his treatments and I am terrified that he will be devastated if he can't recieve #3.

We live outside of Charlotte, NC and his doctors are  Charlotte Oncology. We recieved a second opinion from Blumenthal at Carolinas Medical center that said he is on the right path.

 

We have children-- 7, 10 and 13 year olds and been married for 15 years. I lost my Dad two years ago (only 60) to lung cancer. This has been overwhelming and I'm very grateful to find this site.

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Dana R.'s picture
Replies 13
Last reply 9/20/2012 - 3:30pm

This month marked 10 years since my husband got the news that his scans were clear. In Jan of 2001, lung mets turned up in both lungs. He received a biochemo regimen that was being studied at the time at MDA by Dr Legha. (high dose IL-2 plus interferon, cisplatin, vinblastine, and dacarbazine) Then a year of just immunotherapy. Our oncologist says he is "cured" because the data is demonstrating that people who live at least 5 years after high dose IL-2 continue to be free of disease at 10 years, and further out, too, I guess. So grateful for the guys in the labs doing the research!

Dana R

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FormerCaregiver's picture
Replies 9
Last reply 6/5/2011 - 12:47am

Here is my updated list of some of the most promising treatment options (depending on
eligibility criteria). Although I have tried to list them in order of efficacy, I am
really just making some educated guesses here.

1. Adoptive cell therapy (also called TIL treatment). It looks like this offers the
greatest chance of achieving durable remission in some cases.

2. GM-CSF (Leukine) together surgery when needed. Some long-term melanoma warriors are
using this approach.

3. Yervoy (ipilimumab)
4. BRAF and MEK inhibitors
5. IL-2
6. Other treatments such as chemo and biochemo.

The biggest problem that we face in trying to decide on treatments is a lack of reliable,
unbiased, and up to date information.

The other main thing to keep in mind is the medical term "overall survival". As far as I
know, only adoptive cell therapy and Yervoy have been shown to improve this in a
statistically significant amount of patients.

I look forward to your comment on the above.

Best wishes

Frank from Australia

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awg's picture
Replies 3
Last reply 5/31/2011 - 12:28am
Replies by: aynw, awg, jimjoeb

Hello,

I underwent a superficial lymph node dissection (left groin) for management of Stage IIIa melanoma on May 18th. The operation went very well and thankfully the pathology came back negative. I had a total of 4 node that were removed as part of the sentential mapping 2 superficial on the RT and 2 on LT one superficial and one deep. Only the superficial node on the LT was positive.

Prior to my questions let me say that I have spoken with my surgeon and was instructed to rest until my appointment on Tue unless my condition changes.

I would like to hear from some people who have had this procedure/

My question and reason for this post is to gage the recovery time of this operation.

1. I have two drains still in place. The output of the drains is slowing down but I am noticing increased drainage from around the primary site of the drains. Is this normal?

2. As I was informed by my surgeon the location of the incision makes it difficult to heal, femoral triangle to a few inched on the abdomen (through the waistline). I am following directions and spending most of my time reclined to limit pressure on the incision. What is normal heal time for an incision in this area if all goes well and I avoid infection?

3. I seem to have some mild swelling (no redness or heat) in my upper thigh but due to the numbness of my thigh it is difficult to gage. Is this common? When does it begin to go away?

Any and all thought and comments greatly appreciated.

Thank you,

Allen

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deirgey's picture
Replies 4
Last reply 5/28/2011 - 11:23pm

As some of you may know, my father has stage IV Melanoma. His first treatment at Arizona Cancer Center was Avastine and Abraxane and he started that some time in February. It was clearing up most of the cancer cells in his lungs and spine but the cancer in his liver was still growing so they pulled him from that. He started his 1st dose of IPI about 5 weeks ago and started having diarrhea 2 weeks ago. They did not give him his second dose of IPI and instead proceeded with a colonoscopy and found he had colitis. His doctor deemed this as a successful response to IPI and that he was 1 of 2% of people who responded so quickly to the drug!! I was surprised he was so quick to say it was successful without a scan to follow, however he is the doctor and not me :) Nevertheless, we are VERY excited with this news, however we are trying to be cautiously optimistic. :)

Anybody else had a quick response to IPI?? YAY for IPI!!!

Deidre Grief (Father Stage IV)

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