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.

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Abstract:

Cutaneous melanoma originates from pigment producing melanocytes or their precursors and is considered the deadliest form

of skin cancer. For the last 40 years, few treatment options were available for patients with late-stage melanoma. However,

remarkable advances in the therapy field were made recently, leading to the approval of two new drugs, the mutant BRAF

inhibitor vemurafenib and the immunostimulant ipilimumab. Although these drugs prolong patients’ lives, neither drug cures

the disease completely, emphasizing the need for improvements of current therapies. Our knowledge about the complex

genetic and biological mechanisms leading to melanoma development has increased, but there are still gaps in our

understanding of the early events of melanocyte transformation and disease progression. In this review, we present a summary

of the main contributing factors leading to melanocyte transformation and discuss recent novel findings and technologies that

will help answer some of the key biological melanoma questions and lay  the groundwork for novel therapies.

Narrowing the knowledge gaps for melanoma 

http://www.wistar.org/sites/default/files/content/Slipicevic_UJMS_2012.pdf 

Best Regards,

 

Jimmy B

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Anonymous's picture
Replies 6
Last reply 5/4/2012 - 2:33am

So what is one to do?  We are in Hawaii 6 months out of the year, so being indoors all year round is not an option.  Protective clothing works for a bit, but can be sticky and warm.  So on those days I'm out in sun in my bathing suit, is sunscreen safe?  The sun seems like such a wonderful thing, I smile just seeing it shine and love the warmth on my skin.  It almost seems unnatural that something so wonderful can cause cancer.  Of course, too much of a good thing is never good; but is the alternative, oxybenzone, nano zinc, etc good?  Seems like lose/lose.  What is the BETTER of the 2 evils?  Confused as I try to live my new way of life.

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j.m.l.'s picture
Replies 2
Last reply 4/23/2012 - 5:55pm
Replies by: j.m.l., fdess056

Has anyone had ear ringing, headaches, eye problems, limb weakness after taking yervoy. If you felt any of these annoyances, what did you do?

I have been suffering from these for months now. And no doctor has an answer for me.

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Dgentz's picture
Replies 9
Last reply 4/24/2012 - 8:47pm

Hi! I'm due to start IL-2 next week after a recent surgery to remove more lymph nodes was not fully successful. I'm a bit scared of the treatment, based on things I've read about side effects.

Has anyone been through it recently?

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Becky C.'s picture
Replies 5
Last reply 2/6/2013 - 9:09am
Replies by: Anonymous, JerryfromFauq, Becky C., Janner

Hi, was wondering if anyone has seen this melanoma prediction calculator at melanomaprognosis.org. You enter in your individual factors and it gives average survival rates. I know the doctors don't really like to look at these average survival rates, but it seems fairly accurate, based on what my doctor has told me and from everything I have researched. Only thing I don't  understand is that the 5 and 10 year survival rates go down. It's my understanding that when it gets that far out, the chances of recurrence goes down dramatically. I would like to hear what other peoples's opinion is of this.   

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teri0915's picture
Replies 3
Last reply 5/8/2012 - 11:18am
Replies by: teri0915, KRob

Hi everyone!! My name is Teri, im new to this site and i am so glad I've found it! There doesn't seem to be many sites for melanoma and im glad that ive found it to hopefully connect with other fighters of this disease and to hopefully share some words of wisdom, experience, advice and support. I do have a question though. I have been told to watch for unusual bruising/bleeding while on temodar but what really consists of unusal? I am very fair skinned and ive always bruised easily, or at least they show easier, but lately ive noticed a ton of bruises of my legs and i dont remember running into anything lately. Has anyone else had this problem? Im wondering if its just a mix of all of my medication together.

Live for today because tomorrow isn't guaranteed. Think positive, it could be worse!

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Hi everyone!! My name is Teri, im new to this site and i am so glad I've found it! There doesn't seem to be many sites for melanoma and im glad that ive found it to hopefully connect with other fighters of this disease and to hopefully share some words of wisdom, experience, advice and support. I do have a question though. I have been told to watch for unusual bruising/bleeding while on temodar but what really consists of unusal? I am very fair skinned and ive always bruised easily, or at least they show easier, but lately ive noticed a ton of bruises of my legs and i dont remember running into anything lately. Has anyone else had this problem? Im wondering if its just a mix of all of my medication together.

Live for today because tomorrow isn't guaranteed. Think positive, it could be worse!

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Replies by: triciad, cltml

http://www.ktvn.com/story/17634621/immunotherapy-and-cancer#.T5RSQQh4p9E.blogger   Immunotherapy and Cancer - KTVN Channel 2 - Reno Tahoe News Weather, Video

New rules of engagement for older patients

The body’s immune system does weaken with age, but it also changes, and that changes the rules for fighting disease within the body.

Dr. Curiel’s group started by examining an immune therapy that they previously had shown to work in younger hosts, including cancer patients. It’s designed to eliminate regulatory T cells (called Tregs), which are cells that turn off immune responses, allowing cancer to progress. Tregs increase in cancer. In young hosts, the drug turns off Treg activity, allowing the immune system to function better. In older hosts, even though the drug turns off the Tregs, it has no clinical benefit.

Dr. Curiel asked the question why, and in this paper his team explains the answer. In older mice, when the drug turned off the Tregs, the researchers found that another type of immune suppressor cell (a myeloid-derived suppressor cell or MDSC) exploded in number to take the Tregs’ place, hampering clinical efficacy. That did not happen in young mice.

The team added a second drug that targets the MDSC, and found that with those tools to help immunity, the older hosts can combat cancer just as well as the younger hosts. Adding the second drug afforded no clinical benefit to young hosts, as their MDSC numbers had not increased.

“We’ve shown that an aged immune system can combat cancer just as well as a young one if you remove the impediments to successful immunity, which are different than those in younger hosts,” Dr. Curiel said. “We’ve shown that if you test all your immune therapy just in young mice and young people, you’ll never learn how it works in older patients — the ones most at risk for cancer. You might conclude that drugs don’t work in aged hosts, when they do. But they have to be combined with some help.”

Human trials on the horizon
The next step is to test these concepts in an immune therapy clinical trial for elderly patients, which the research team plans to do, Dr. Curiel said.The drug that is added is anti–Gr-1 antibody and would have to get approval from the FDA, meaning Clinical Trials.

 

With that said, What if we added 5-Fluorouracil to immunotherapy like Yervoy and or Anti-PD1.

5-Fluorouracil selectively kills Tumor-Associated Myeloid-Derived Suppressor Cells Resulting in Enhanced T Cell–Dependent Antitumor Immunity.

This would be the one, two punch for elderly cancer patients. Let's Think Outside the Box.

Myeloid-derived suppressor cells (MDSC) have been identified as a population of immature myeloid cells with the ability to suppress T-cell activation in humans and mice. These cells accumulate in the blood, lymph nodes, bone marrow, and at tumor sites in many human cancers and animal tumor models, and inhibit both adaptive and innate immunity. They notably have the capacity to inhibit CD8+ T cell antigen-specific reactivity by different mechanisms, mainly through their capacities to produce nitric oxide and radical oxygen species.

Best Regards,

Jimmy B
 

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green8300's picture
Replies 35
Last reply 5/11/2012 - 3:28am

 

i was on the beach in australia half the year for 14 years,,,,i never put sun screen on,,,,,,,,,i have olive skin or so my mom told me,,,,,,,had a little thing on my back,,,,finally my dad payed for me to go to dermo,,,,turned out to be a .65 mm melanoma,,,,,i was freaked out and still am,,,,,,,,,,had a shave biopsy,,,,7mm submitted for processing,,,,,they say its a

 diagnosis   ,,,, malignant melanoma with extension to pap dermis clarks level 2,,,,,,,,

,microscopic description         there are atypical malancytes present both singly and in nests along the dermoepidermal junction, the melanocytes have large nuclei with prominent nucieoli and abundant cytoplasn with brown granular pigment occasional mitotic figures are present the lesions is broad and poorly circumscribed laterally the nests do not maintain discretion and merge with both adjacent nests and single cells, the cells with in the nests have lost cohesion , atypical spindled melanocytes are present in the nests with in the papilary dermis aswell, these nests are irregular in size and shape and the melanocytes within them are atypical, a patchy lymphocythic infiltrate is present beneath the lesion

note the neoplasm measure .65mm at its greatest thickness in these sections, the lesion is not ulcerated , a pathcy lymphocytic infiltrate is present beneath the lesion, one mitosis per square mm is identified

 

then i got it cut out and this is what came back from pathologist

excisional biopsy measurein 30mm was submitted for processing

MICROSCOPIC DESCRIPTION

there are sections of epidermis, dermis, and subcutaneous tisses present on these slides, there are atypical melancytes presentsingly and in nests in the epidermis adjacent to the prior surgical site which contains granulation tissue fibrosis and chronic inflamation and is covered with scale crust

DIAGNOSIS

skin and subcutaneous tissue with scar and persistance of melanoma

NOTE

residual intraepidermal melanoma is present in these sections however the surgical margins are clear and the neoplasm appears to be completely excised and incidental excised intradermal melanocytic nevus is also present in these sections

any input would be greatly appreciated,,,,,,,,,ive been reading everything i can find,,,,i went to two top oncologists one guy said to do it the other kind of said i didnt need to,,,,and my dermo kind of thinks i dont need to,,,,,but she also did the wide excision,,,,,,and ur kind of not suppose to do that if u wanna get a good read off the drainage points so im confused and not relaxed about the whole thing,,,any input once again appreciated ,,,,,,thanks

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i was on the beach in australia half the year for 14 years,,,,i never put sun screen on,,,,,,,,,i have olive skin or so my mom told me,,,,,,,had a little thing on my back,,,,finally my dad payed for me to go to dermo,,,,turned out to be a .65 mm melanoma,,,,,i was freaked out and still am,,,,,,,,,,had a shave biopsy,,,,7mm submitted for processing,,,,,they say its a

 diagnosis   ,,,, malignant melanoma with extension to pap dermis clarks level 2,,,,,,,,

,microscopic description         there are atypical malancytes present both singly and in nests along the dermoepidermal junction, the melanocytes have large nuclei with prominent nucieoli and abundant cytoplasn with brown granular pigment occasional mitotic figures are present the lesions is broad and poorly circumscribed laterally the nests do not maintain discretion and merge with both adjacent nests and single cells, the cells with in the nests have lost cohesion , atypical spindled melanocytes are present in the nests with in the papilary dermis aswell, these nests are irregular in size and shape and the melanocytes within them are atypical, a patchy lymphocythic infiltrate is present beneath the lesion

note the neoplasm measure .65mm at its greatest thickness in these sections, the lesion is not ulcerated , a pathcy lymphocytic infiltrate is present beneath the lesion, one mitosis per square mm is identified

 

then i got it cut out and this is what came back from pathologist

excisional biopsy measurein 30mm was submitted for processing

MICROSCOPIC DESCRIPTION

there are sections of epidermis, dermis, and subcutaneous tisses present on these slides, there are atypical melancytes presentsingly and in nests in the epidermis adjacent to the prior surgical site which contains granulation tissue fibrosis and chronic inflamation and is covered with scale crust

DIAGNOSIS

skin and subcutaneous tissue with scar and persistance of melanoma

NOTE

residual intraepidermal melanoma is present in these sections however the surgical margins are clear and the neoplasm appears to be completely excised and incidental excised intradermal melanocytic nevus is also present in these sections

any input would be greatly appreciated,,,,,,,,,ive been reading everything i can find,,,,i went to two top oncologists one guy said to do it the other kind of said i didnt need to,,,,and my dermo kind of thinks i dont need to,,,,,but she also did the wide excision,,,,,,and ur kind of not suppose to do that if u wanna get a good read off the drainage points so im confused and not relaxed about the whole thing,,,any input once again appreciated ,,,,,,thanks

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LynnLuc's picture
Replies 3
Last reply 5/9/2012 - 6:15pm

http://www.newyorker.com/services/presscenter/2012/04/23/120423pr_press_releases

Can the Body’s Immune Response Help Treat Cancer?

 

 

In “The T-Cell Army” (p. 24), Jerome Groopman looks at new cancer treatments that use the body’s own immune system to fight the disease. The idea that the body’s immune system could play a crucial role in eradicating cancer originated in the late nineteenth century, but was not embraced by the scientific community. More recently, the “war on cancer” promised that the disease would be beaten within ten years; in 1980, a possible cure for cancer, derived from the immune system, appeared on the cover of Time. But it, too, failed. Jim Allison, the director of the tumor-immunology program at Memorial Sloan-Kettering, began his career by focussing on why the body’s T-cells (the potent type of white blood cell that destroys cells infected with microbes it recognizes as foreign) failed to recognize cancer as being aberrant. In the beginning, “many people thought that the immune system didn’t play any role in cancer,” Allison tells Groopman, but, in 1987, researchers in France discovered a protein called cytotoxic T-lymphocyte antigen-4, or CTLA-4, which protruded from the T-cell’s surface. Contrary to other reseachers at the time, who thought that CTLA-4 increased the activity of the immune system, Allison and his team believed that CTLA-4 actually acted as a brake on the T-cells. “We ought to free the immune system, so it can attack tumor cells,” Allison explains to Groopman. The resultant CTLA-4 antibody is “unlike any other drug you know,” Allison tells Groopman. “You are not treating the cancer—you are treating the immune system. And it was the first drug of any type to show a survival benefit in advanced melanoma patients in a randomized trial.” In March, 2011, the National Cancer Institute announced that it would fund a network of twenty-seven universities and cancer centers across North America to conduct trials of immune therapies, and, recently, patients who had not responded to available cancer therapies have “shown dramatic and unexpected responses to a new series of treatments that unleash the immune system,” Groopman writes. Groopman speaks to two patients diagnosed with metastatic melanoma who are now in remission after receiving experimental immunotherapy treatments—though not without severe side effects. Attacks on the skin, intestines, lungs, liver, thyroid, pituitary gland, kidneys, or pancreas are all possibilities . Still, in trials of the drug, nearly a quarter of patients who had been given a seven-month life expectancy were still alive at three to five years. However, Allison warns, “you’ve got to be careful about using the word ‘cured,’ because some patients have residual tumors. But it doesn’t matter, because their cancers are not growing. And in others tumors just pop up and then go away. So it’s become something of a chronic condition,” rather than a death sentence. “The future is about thoughtful combinations, different antibodies, perhaps with targeted therapies,” Jedd Wolchok, a clinician at Memorial Sloan-Kettering who worked on the early trials, tells Groopman. “There won’t be a single silver bullet for everyone.”

Read more http://www.newyorker.com/services/presscenter/2012/04/23/120423pr_press_releases#ixzz1skFhoSmd

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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LynnLuc's picture
Replies 1
Last reply 4/22/2012 - 8:54pm
Replies by: bikerwife

 

Melanoma fought on two fronts
PUBLISHED: 12 APR 2012 00:05:33 | UPDATED: 12 APR 2012 11:30:51
SHARE LINKS:email
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JILL MARGO

The aftermath of surgery for melanoma.Photo: Dean Osland

Sometimes, when hope is low, cancer treatment can turn up an unexpectedly good result. This happened recently in New York at the renowned Memorial Sloan-Kettering Cancer Centre.

It involved a woman of 41 with advanced melanoma who had three children and had run out of curative options.

In 2004 she had been treated for a melanoma on her back, but the cancer had already escaped and seven years later, despite further treatment, had spread into her lymph nodes, her spleen and into an area close to her spine.

Although she received the newly approved melanoma drug, ipilumumab, her condition worsened. She was in pain and her outlook was grim.

To relieve the pain of the lesion pressing on her spine, doctors gave her local radiation only to this area.

What followed was unexpected. Not only did the spinal lesion shrink back dramatically, but so did the lesions in the rest of her body that had not been targeted by the radiation.

The radiation had triggered something that made the tumours in her back and lymph shrink and those in her spleen, that had appeared as distinct dark patches on the scan, vanish completely.

It is now 15 months since that occurred and she continues to do well. CT scans two weeks ago found the only site of disease was on her back, which remained stable in size.

Her unique case, published in The New England Journal of Medicine last month, described the event as a rare phenomenon.

It occurs when local radiation delivered to a single tumour in a person with advanced disease results in tumour disappearance outside the irradiated area.

It has been described in cancer before including in melanoma, lymphoma and kidney cancer.

While no one is sure how it eliminates cancer, researchers from MSKCC suggest this case may have resulted from a combination of the new drug and the radiation. They believe the immune system’s cancer-fighting response may have been turned up a notch with the addition of focused radiation.

Ipilimumab was developed at MSKKC and is the first drug ever to show an improvement in overall survival in advanced melanoma.

It is a form of immunotherapy that exploits the body’s own immune system to attack cancer. Last year it was approved for use in advanced melanoma in the United States and in Australia.

For this case study, changes in the woman’s immune system were constantly measured and changes in tumour-directed antibody levels and immune cell populations were noted at the time of the abscopal effect.

This suggests radiation may help activate the immune system to fight cancer. Trials are now under way in the US to confirm the approach of combining radiation therapy with ipilimumab for the treatment of melanoma and, interestingly, prostate cancer.

Michael Postow, oncologist and the lead author of the case study, says the woman still complains of right-sided rib pain which he believes may be due to nerve damage from the cancerous mass that was in her back.

Despite this, she now has “remarkably durable, stable, low volume disease and is clinically well”.

The Australian Financial Review

JILL MARGO
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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Eileen L's picture
Replies 16
Last reply 4/24/2012 - 10:22am

Hi, folks. I have been diagnosed Stage IV for over four years and have had remarkable success with a drug called Nexavar, which is not suppose to work at all for us. Well, my luck has seemed to run its course.  I have a tumor on my adrenal gland that was stable for three years and now has taken off. It is up to 7cm per a MRI on Saturday. Was all set to go for surgery to remove the tumor when upon examining the MRI the surgeon realized I would likely lose my kidney if she removed the tumor, since it was so near to the renal arteries. So, now both my oncologists (one generalist, another Melanoma specialist) have recommended trying Zelboraf to shrink the tumor.

I am considering getting on the Genentech Phase 1b study, pairing Zelboraf with a MEK inhibitor. My Melanoma specialist, Dr. Daud at UCSF, thinks the MEK will boost the effectiveness of the Zelboraf by about 10-20%. While that sounds great, I also am without any therapy while I qualify for the trial and I am feeling like the Melanoma is going to overrun my body while I wait for the the trial to begin. I need to hold off on the Nexavar since I need to have a "wash out" period for the study. Have already been off of it for over a week in preparation for the now cancelled surgery. Since I can just start on the Zelboraf immediately if I don't wait for the trial approval, not sure what to do. Am seeing my "general" oncologist this afternoon and will discuss with him as well. Any thoughts would be greatly appreciated.

In the meantime, I have gone from being the poster child for positive thinking, living in the moment, making the most of every day, to a crying, weepy mess. I feel hopeless and defeated. I thought that I would be sitting in a hospital bed right now recovering from a laproscopic surgery. Instead, I am sitting in uncertainty, which I know is what we Stage IV folks do all the time. I just got so use to stable scans that I was lulled into a false sense of security, that somehow I was going to dodge the bullet depite knowing that the Nexavar usually doesn't work for more than 3-5years for the cancers it is approved to treat. The fact that I got over four years of stability from a medication that wasn't even suppose to work at all is a miracle which I am finding hard to be grateful for at this time.

Well, I guess it's time to stop the pity party. I am thankful for this board, I don't come here often, but there is always so much strenght and love here. I can use whatever encouraging words are out there. Any thoughts on whether to start the Zelboraf now or wait for the trial approval would be appreciated!

Eileen L

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mandamanda123's picture
Replies 16
Last reply 10/9/2012 - 9:47am

Hi, my boyfriend has been complaining that he has limited mobility following a complete lymph node dissection (underarm).  He said that it feels like a guitar string (maybe a nerve or a ligament?) was reconnected too tightly.  When he raises his arm to a certain point, he experiences a lot of pain and can go no further.  We can even feel the "string" from the surface of his skin.  It's been just over a month since the surgery.  Just wondering if anyone else has experienced this.  Thanks.

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deardad's picture
Replies 11
Last reply 12/14/2014 - 5:13am

Hi this sounds a bit far fetched and I am sceptical, but I'm just wondering whether there is any substance or medical research related to the theory of ingesting baking soda on a weekly basis to decrease the acidity levels that is required for cancer to spread?

Has anyone tried this?

Nahmi from Melbourne

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