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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willtolive's picture
Replies 3
Last reply 3/14/2012 - 11:30pm

Hi all

 

Just an update about my wife:

She begun ipi treatment March 11, 2011, the scans in June revealed that ipi had worked very well.

Here almost a year after, she is still NED. It is still unbelievable. To all you Warriors out there: keep fighting..!!!

I dont know, why ipi worked so well on my wife, but she had always been positive, even when it was worse, with hope and believe in her heart.

AND she went to a chinese doctor (who graduated in Beijing) and got acupuncture twice a week. Its impossible to say what makes you a responder, but I recommend the following, because it helped my wife. Maybe a combination got rid of the cancer?!

 

1) Stay positive (like himynameiskevin - a virtual lighttower for me and my family through 2011, all my hopes and prayers goes to you our fellow warrior)

2) Keep faith  that you someday will be NED.

3) Acupuncture, one or twice a week. Be sure that it is a original chinese doctor. Here in Europe, many try to learn the profession, but I think you have to be Chinese to really understand was goes on in your body, their knowledge about the bodybalance etc.

4) AVOID SUGAR! I know it´s hard to implement, but the craving only lasts a week or two, then your mind and body has written sugar off! Remember this: cancer cells gets nutrition from glycose/sugar. Cut sugar off and let the cancer cells starve to death! Many patients with cancer have a extraordinary desire for sugar, possibly related to the desire of the cancercells. Get the natural sugar from fruits instead. 

5) Excercise at least 3 times a week. Exercise is good for the immunesystem and is a part of preparing your body to fight the cancer. Besides it is good for your mind, and maybe you will loose weight as well.

 

Keep fighting all my friend

 

 

 

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Charlie S's picture
Replies 18
Last reply 3/14/2012 - 11:20pm

After being in either the hospital or physical rehab since last halloween, Jerry is finally back at home with his family-------------under the care of hospice.

Spoke with him on Saturday and he is in good spirits, comfortable, lucid and was looking forward to going for out for a ride.   His tumor burden in and around his spine/spinal cord are inoperable and after a good, long 2+ year run on ipi, he is just out of options.

For those of you that don't know, Jerry was a pioneer when he started on ipi brain met trials in boston.  He has contributed a lot of knowledge through his trials and tribulations and he truly does hope, believe and wish that what science has learned by his trial participation will indeed help others in the futue.

He is a great guy with a great wife and two daughters. Please keep him in your thoughts.

I'll ask if it's okay to post his mailiing adress for those that would be inclined to send a card.

Charlie S

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Replies by: aldakota22, deardad

This is quite a good start! A neck lymph node almost gone as well as a small met just under the skin. Can't tell about the tumors deep inside lungs and other places but why should they behave differently?

Part of me has wild hopes that this may work 100%...but part of me prefers to be prepared to a future set-back in order to avoid too much disappointment.  

This Braf stuff seems a bit sci-fi to me - IT IS JUST TOO EASY especially after 3 years of chemos and ipi. CAN'T BE TRUE!

I'd rather take as litle of it as possible (having heard about potential NRAS mutations and dormant cancer cells possibly being activated by the drug).

Doctors say that minimum treatment is 2 months even if everything seems to have gone.

I'd be happy to hear about your experience with duration of Zelboraf intake and effect!

 

 

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boot2aboot's picture
Replies 7
Last reply 3/14/2012 - 3:06pm

 

Bristol-Myers Squibb Co. (BMY) Chief Executive Officer Lamberto Andreotti received a 27 percent increase in total compensation after a new skin cancer drug gained approval and contributed to higher sales and profits.

Andreotti’s total compensation rose to $14.9 million in 2011 from $11.8 million a year earlier, according to a regulatory filing. The pay included a bonus of $4.2 million related to the company’s financial results, share price increase and the start of sales for the melanoma drug Yervoy, according to the filing. Andreotti also received an 11 percent base salary increase to $1.5 million effective April 1, 2011, “to bring him closer to competitive market levels,” the company said in the filing.

The higher pay for Andreotti reflected, among other things, his leadership in “delivering the strong 2011 financial results” such as annual earnings per share of $2.28 that exceeded a target of $2.14 a share and “executing the Yervoy launch,” the company said in the March 9 filing with the U.S. Securities and Exchange Commission.

Bristol-Myers loses patent exclusivity on its best-selling drug Plavix later this year. It is counting on new drugs such as Yervoy to replace the expected reduction in revenue. The melanoma treatment was approved in March 2011 and generated $360 million in sales last year. Bristol-Myers in January agreed to purchase Inhibitex Inc. for $2.5 billion to gain its hepatitis C drug as part of its “string of pearls” strategy to develop new products through acquisitions.

The New York-based drugmaker also ended a one-year salary freeze for all employees in 2011, the company said in the filing.

don't back up, don't back down

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Richard_K's picture
Replies 1
Last reply 3/14/2012 - 10:34am
Replies by: Anonymous

The Connecticut legislature is considering legislation to prohibit the use of indoor tanning devices for individuals under the age of eighteen.  Get involved.  Send an e-mail to your senator and representative supporting this.

Dick

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Anonymous's picture
Anonymous
Replies 6
Last reply 3/14/2012 - 9:10am
Replies by: Anonymous, Janner, dian in spokane, SoCalDave, aldakota22

I was diagnosed with melanoma in situ 5 years ago which was removed with a wide excision successfully.  I was just looking at my scar and noticed a darkened area on scar line, it is subtle, but appears to be a purple/red spot right in area of the melanoma mole.  What does a local recurrence look like?  Should I be looking for more of a mole or could a purple spot also be something to concern myself with?  Do scars evolve this many  years out? 

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Jeff's Mom's picture
Replies 20
Last reply 3/14/2012 - 12:04am

Jeff will start IL2 on Monday.   Thank you to all who responded to my previous post.  Each reply lifted my spirits and renewed my hope that Jeff will be a lucky responder!!  There is so much support and knowledge on this board - just amazing!

I am interested in the anti-PD1 drugs out there - what is the difference between the MDX 1106 and the MDX 1105?  Molecule size??  Anybody know?

I also watched Dr. Weber's webinar on TIL...anyone done TIL? Very interesting and also the combination of Yervoy and anti-Pd1 might be a viable option as a clinical trial.  This is a Phase 1 trial with escalating dosages.  Anyone know what the usual dosage of anti-PD1?

Any info would be greatly appreciated - thanks again,

Jeff's Mom

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RC17's picture
Replies 1
Last reply 3/13/2012 - 5:14pm
Replies by: Janner

Has anyone been diagnosed with Melanoma years after a shave biopsy? In 2002 I had a shave biopsy on my back it came back Lentiginous Compound Nevus I had no further treatment. Last year my husband was putting sunscreen on my back and noticed a small brown spot was appearing in the middle of my scar. I went to my Dermatologist to have it removed, she said she has never had one come back as Melanoma. We were both shocked when it came back as Malignant Melanoma in SITU.

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Hi to all. I am a Stage IV survivor, over four years since my Stage IV diagnosis. As some of you know, I had an unusually good response to Nexavar and have been on the drug with minimal side effects since initial treatment. I did get tested a few years ago and I am BRAF positive.

I am now faced with an adrenal gland tumor that has been there for three years, not doing much of anything until my last scan showed an almost doubling of size, It is now 5.4cm. Melanoma was confirmed by a fine needle biopsy, got the path report late last week. The plan is to remove that sucker and stay on the Nexavar. I am trying to avoid moving to another treatment for as long as possible, since I also have multiple sclerocis and psoriasis, both autoimmune diseases, that make me a questionable candidate for ipi and other immune based therapies. So my treatment options are limited and I want to preserve them for as long as possible. The thinking is that since I haven't had any new tumors in three years that perhaps the adrenal gland tumor were some errant cells and the Nexavar is still giving me significant benefit. The only other tumors I have had this time are two in my lungs that shrunk considerably during initial treatment and haven't grown for about three years. At my last PET scan they did not light up at all, so we think they might not be active at all. Both my general oncologist and Dr. Daud, at UCSF Melanoma Treatment Center, conccur with this plan. Which makes me very happy, because this is the direction I wanted to take when I heard the news about the tumor growth.

 I am hoping to hear in a few days what surgical technique is recommended. My oncologist is talking to the SRS guys, the laproscopic guys, and the regular surgical guys to see if I am a candidate for a less invasive surgery than just cutting me open. In the meantime I am concentrating on having lots of fun, being with the people who I love, and trying to get my taxes done!

BTW, are there any fellow Melanoma Warriors out there who are Kaiser patients in the SF/Bay area? Haven't met anyone in quite awhile and would love to network with you!

Thanks to so many on this board who have provided me with information and support over the last four plus years. I have an intuition that I have many days, months and perhaps years of life ahead of me, and I intend to live each day as fully as possible.

Love to all!

Eileen L

 

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aldakota22's picture
Replies 7
Last reply 3/13/2012 - 12:26pm

Today I just completed my sixth month on Zelboraf.Drug for me is working as hoped.Have not had a scan of any kind since late last July 2011.Will see doc on the 3/21 and schedule one soon after.Side effects on drug are do able.Hoping to stay on this treatment for a lifetime as progress is being made on managing melanoma as a chronic disease.,Praying for myself and all other fighters out there. Thanks for keeping me in your thoughts....Al

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Please join us for a free teleconference on April 12, 2012 from 8-9pm EST.  The topic is "When Mom or Dad has Melanoma" and will be hosted by Dr. Fran Lewis from the University of Washington.  Don't forget to register!

http://www.melanoma.org/get-involved/when-mom-or-dad-has-melanoma-educational-teleconference 

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/13/2012 - 9:34am

Hi,

 

I have to travel over 180 miles round trip to my oncologist on a regular basis. With the cost of gas, we are going broke!

Does anyone know of any organization(s) that helps cancer patients pay for the cost of gas.

Thanks

Michael

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boot2aboot's picture
Replies 1
Last reply 3/13/2012 - 6:40am
Replies by: MeNDave

 

 

 

The rising number of malignant melanoma cases the past four years at Karmanos Cancer Institute in Detroit illustrates the need for cutting-edge research into some of the most aggressive forms of the still mostly untreatable skin cancer.

But that will change starting this summer as Patricia LoRusso, D.O., director of phase-one clinical trials and the institute's Eisenberg Center for Experimental Therapeutics, begins a three-year, $6 million research project as co-leader of a group of 50 cancer researchers at 12 medical centers who will study BRAF Wild-Type metastatic melanoma. 

BRAF Wild-Type is an aggressive form of metastatic melanoma that has fewer treatment options. 

More than 70,000 new cases of melanoma are diagnosed each year, mostly in older adults, with more than 8,000 deaths annually. Some 50 percent of metastatic melanoma cases are BRAF Wild-Type. 

Most metastatic melanoma patients, including those with BRAF, have a median survival rate of six to nine months with a five-year survival rate of less than 20 percent, according to Karmanos. Melanoma accounts for 73 percent of all skin cancer deaths. 

"We know that there is a desperate need for treatment for those suffering from the most aggressive forms of the disease ... for which there are very few effective treatment options," said LoRusso, who also is professor of oncology at Wayne State University's School of Medicine in Detroit. 

While only 150 patients will be studied nationwide at the 12 medical centers, including Karmanos, LoRusso said several other clinical studies on melanoma are in the works at Karmanos. 

"Melanoma has always been a tumor type of importance in our clinical program," LoRusso said. "Our melanoma service at Karmanos, led by Dr. Lawrence Flaherty, has been involved in the development of many drugs that are being investigated or have been recently approved for treatment." 

With few treatment options, Karmanos researchers and clinicians focus on recruiting patients to clinical trials to test new agents, LoRusso said. 

At Karmanos, new malignant melanoma cases have increased 12.6 percent annually to 415 in 2011 from 365 reported in 2008. Over those four years, Karmanos has treated 1,546 malignant melanoma patients, including those with BRAF Wild-Type melanomas. 

But LoRusso said the new study -- which seeks to treat patients individually based on their genetic makeups -- is expected to help develop a better understanding of an aggressive form of the disease. 

"We feel that the novel trial design, which incorporates new as well as approved drugs, is not only a paradigm shift in how we treat this disease, but will hopefully improve overall outcomes for our patients," LoRusso said. 

For example, medical researchers will conduct personalized medical trials and genomic profiling on patients with BRAF Wild-Type melanoma, she said. 

"Our goal is to match the right treatment to the right patient, based on their genetic makeup." 

Based on each subject's genetic profile, the trial will evaluate the benefits of personalized therapy. 

 

 

 

 

 

 

"(Does it) improve outcomes over the way we currently treat patients?" LoRusso said. "If successful, this personalized approach may not only benefit BRAF Wild-Type metastatic melanoma patients, but could also serve as a model for other types of cancers." 

LoRusso said the 50 researchers, who include co-leader Jeffrey Trent, Ph.D., come from backgrounds that include clinical medicine, genomic research, computer science and drug development. 

Trent is president and research director at Grand Rapids-based Van Andel Research Institute and theTranslational Genomics Research Institute in Phoenix.

"Therapy options for people who have this advanced disease are abysmal," Trent said. "The likelihood of rapid discovery in the traditional path of drug development is very unsatisfying, especially when you have a group of people who have limited hope." 

By taking care of patients in the project with individual treatments, Trent said, research time can be reduced dramatically. 

In Michigan, research members also include principals Brian Nickoloff, M.D., Michigan State University's College of Human Medicine, and Craig Webb, Ph.D., at Van Andel. 

The melanoma project is funded by Stand Up to Cancer, the American Association for Cancer Research and the Melanoma Research Alliance

For more information on upcoming clinical trials, send inquiries to MelanomaDreamTeam@karmanos.org.

 

If anyone is in Detroit area...i recommend Dr LaRusso and Karmanos and i recommend them way over Univ of Mich(blah-i had BAD experience there)....It is a good second tier hospital...first tier being of course, sloan kettering, nih, moffitt, anderson...in fact, i am thinking of moving back  to Dtown and going to Karmanos...

boots

don't back up, don't back down

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Gene_S's picture
Replies 5
Last reply 3/13/2012 - 3:10am
Replies by: Gene_S, LynnLuc, kylez
Setback in research into cancer treatment
Marilynn Marchione, The Associated Press
07 March 2012 05:07
 

BOSTON - Scientists are reporting what could be very bad news for efforts to customize cancer treatment based on each person's genes.

They have discovered big differences from place to place in the same tumour as to which genes are active or mutated. They also found differences in the genetics of the main tumour and places where the cancer has spread.

This means that the single biopsies that doctors rely on to choose drugs are probably not giving a true view of the cancer's biology. It also means that treating cancer won't be as simple as many had hoped.

By analyzing tumours in unprecedented detail, "we're finding that the deeper you go, the more you find," said one study leader, Dr. Charles Swanton of the Cancer Research UK London Research Institute in England. "It's like going from a black-and-white television with four pixels to a colour television with thousands of pixels."

Yet the result is a fuzzier picture of how to treat the disease.

The study is reported in Thursday's New England Journal of Medicine.

It is a reality check for "overoptimism" in the field devoted to conquering cancer with new gene-targeting drugs, Dr. Dan Longo, a deputy editor at the journal, wrote in an editorial.

About 15 of these medicines are on the market now and hundreds more are in testing, but they have had only limited success. And the new study may help explain why.

The scientists used gene sequencing to a degree that has not been done before to study primary tumours and places where they spread in four patients with advanced kidney cancer. They found that two-thirds of gene mutations they detected were not present in all areas of the same tumour. They also were stunned to see different mutations in the same gene from one part of a tumour to another.

That means a single biopsy would reveal only a minority of mutations. Still, it's not clear whether doing more biopsies would improve accuracy, or how many or how often they should be done.

Although the study involved kidney cancer, independent experts said the results should apply to other cancers such as breast, lung and colon. And previous research suggests this is so.

"This is an important paper," said Dr. Gordon Mills, co-director of the Institute for Personalized Cancer Therapy at the University of Texas MD Anderson Cancer Center.

Doctors there have been offering genetic testing to patients for several years and have a database of results on about 4,000 tumour samples. So far, about 40 per cent of breast cancers have discrepancies between which genes are active in the main tumour and which ones are active where the cancer has spread, Mills said.

It costs $5,000 to $10,000 to do basic gene analysis of the main tumour, and about 10 times as much to do the kind of testing the scientists in the British study did, Mills said.

And if it were done, "we're going to find a lot of information that we don't know what to do about," such as when one biopsy suggests a certain mutation is driving the cancer and another biopsy suggests a different one is, he said.

It also takes precious time. Swanton said sequencing a patient's entire cancer genome took a very large computer four months. The amount of time required is dropping, but this type of personalized analysis is still years away from being available in the clinic, he said.

Yet the study shows that the single biopsy — "the cornerstone of personalized-medicine decisions" — is not enough, Longo wrote. And "the simple view of directing therapy on the basis of genetic tumour markers is probably too simple."

___

AP Medical Writer Maria Cheng in London contributed to this story.
 

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

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