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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Hi
Just want to let you know my brain MRI from 11 weeks ago Proton treatment on two mets continues to show shrinkage. Other lesion in brain remain stable too. This is 4 weeks from first IPI reinduction. My blood is drawn each week and my liver numbers are very near to normal again. I continue with the 4 pills in the morning morning and 4 Zelboraf pills at night while continuing with the IPI infusions . I am a bit tired and bit unstable at times walking but all in all I feel good. I was really nervous about trying both Zelboraf and Yervoy simultaneously but so far it seems like it might have been the right decision for me. Next brain MRI not for 6 to 8 weeks unless something happens. Will update as new data becomes available, good or bad.
Thanks to all who contribute so much to this website.
Kathy D

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Greg - Kyles dad's picture
Replies 3
Last reply 4/24/2012 - 11:31am
Replies by: Becky, jag, Wilfred

A link to my son Kyle's activities after dx with stage IIIA in 2005; then progressed to stage IIIC in 2010.  He has moved on and hopefully can be an inspiration to some.

http://www.dailytarheel.com/index.php/article/2012/04/kyle_ernst_weightlifter_and_cancer_survivor_sets_sights_on_olympics

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Replies by: Eileen L, Harry in Fair Oaks, Anonymous

Hi gang. I am now doing battle with my HMO, trying to get them to cover the cost of tests required by this Pase I trial I am trying to qualify for. The study sponsors want the health insurers to pay for tests they consider usual care for melanoma patients. My insurer is telling me they don't cooperate/participate in Phase I trials. Any of you had any experience getting a health insurance company to pay for lab work, imaging studies, etc for a Phase I trial? I am appealing their decision but I would love to know if other HMOs and PPOs are covering this stuff. BTW, I am covered by Northern Ca Kaiser.

Thanks!

Eileen L

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Jbrooks's picture
Replies 5
Last reply 4/24/2012 - 11:33am

So much information should I or should I not... I am so confused, I have doctors saying well that is all there is and I should try and there are those who have done it and the melanoma comes back so strong they regret doing it.  I also have a blood clotting disorder that will be effected and that makes me worry.  I would love to hear from those who have done the treatment and those who have not done it and why.  I so do not want to regrett my decision but worry that either way  may be the wrong way to go.  I am 41 my melanoma was 2.1 in depth and one out of the two sentinal nodes had .25 tumor in the outside of the node.  They went back and took the area around the nodes and did not take all the nodes do to the fact of my clotting issue and not being able to have the swelling that may occur with the clotting issue that I have.  I don't know if any of that info makes a difference but that is what I was told.  My melanoma was contained and nonabrupted as well as nonmigrating good I guess, never thought I would say good and cancer at the same time,.

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Jbrooks's picture
Replies 1
Last reply 4/24/2012 - 7:28pm
Replies by: scots

So much information should I or should I not... I am so confused, I have doctors saying well that is all there is and I should try and there are those who have done it and the melanoma comes back so strong they regret doing it.  I also have a blood clotting disorder that will be effected and that makes me worry.  I would love to hear from those who have done the treatment and those who have not done it and why.  I so do not want to regrett my decision but worry that either way  may be the wrong way to go.  I am 41 my melanoma was 2.1 in depth and one out of the two sentinal nodes had .25 tumor in the outside of the node.  They went back and took the area around the nodes and did not take all the nodes do to the fact of my clotting issue and not being able to have the swelling that may occur with the clotting issue that I have.  I don't know if any of that info makes a difference but that is what I was told.  My melanoma was contained and nonabrupted as well as nonmigrating good I guess, never thought I would say good and cancer at the same time,.

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Rebecky's picture
Replies 2
Last reply 4/23/2012 - 7:15pm

Just checking in - 8 years NED, two healthy beautiful children (now ages 7 & 5).  Getting on with life, as my surgeon told me to those many years ago.

Cheers

Rebecky

Stage 1B (diagnosed April 2004)

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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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