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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Nell's picture
Replies 4
Last reply 7/27/2012 - 4:45pm

I have just had surgery for my 3rd local reoccurance....in rt. axilla.  Oncologist says radiation is not very effective....radiation oncologist says if it is truly localized, PERHAPS it can deter spread....Truly don't know what to do.  Just had negative brain MRI and 2 Cat scans--abdomen and chest---last PET was January.  Radiation oncologist says a new PET is needed..and if it is clear, radiation is indicated. My oncologist didn't order another PET....I am 65...I understand Sloan Kettering doesn't even offer interferon anymore, and nothing else is available for stage III....Anyone have experience with radiation for Stage III...Would PET scan offer more info that my recent tests didn't?   Thank you.

One voice can make a song; one life can change the world.

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Gene_S's picture
Replies 6
Last reply 7/30/2012 - 11:51pm
Replies by: awillett1991, ToddC, Gene_S, Anonymous
I am convinced that my melanoma was caused by "The lack of sunshine" since I worked over 40 years sleeping during the day.
I also believe that this is the reason that melanoma rates are skyrocketing today. People that never get quality sun on their skins are the most likely to get cancer (all types).  Best wishes and get some Sun...   Gene
 
See the article "Sunlight and Melanoma" at
 

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

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KMT2003's picture
Replies 13
Last reply 7/28/2012 - 6:42pm
Replies by: fdess056, King, KMT2003, triciad, Anonymous, Nell, Gene_S

I was dx with melanoma in 2007 when a mole was removed from the back of my neck stage unknown. In 6/2012 was dx as stage 3 when a swollen lymph node was removed and a lymph node dissection was also done to remove 12 other nodes which were all negative. I am being seen at Moffitt in Tampa while finishing up 20 treatments of radiation locally. My next step is the interferon/ipilimumab clinical trial at Moffitt in August. Anyone out there going to Moffitt or used either drug to tell their experiences??? I'm really worried about the side effects since I will be going back to work as a school teacher in August when I start my trial.

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himynameiskevin's picture
Replies 10
Last reply 7/27/2012 - 12:35pm

I talked to the radiation oncologist this morning, the decision to stay on Zelboraf until we know for certain what's going on inside my body was made.

A "detailed" MRI has been ordered for next week to give a clearer picture to show how many/much of the tumors in the brain are new, active and growing and which, if any are just necrosis.

A PETCT has also been ordered for next week to show the status of my body, and give insight to whether these news ones in my head are being seeded by something in my body or were there before I started Zelboraf but too small to see. The scan will also show if Zelboraf is even still working.

Depending on the scans, SRS or WBR will take place regardless, and the decision to stay on Zelboraf or trying IL-2 again in the future if all goes well will be made.

So now I just wait for scans.

Until then, thank you all for the continuous thoughts and support. :)

-Kevin

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Wally's picture
Replies 16
Last reply 7/27/2012 - 2:01am
Replies by: Wally, Anonymous, Tina D, Harry in Fair Oaks, Janner
I have had a follow-up scan (the first since my RML Lobectomy in April 2011) and it highlights a possible malignant tumour in lower part my right lung. It also highlighted a suspiscious growth on the side of my face, just ahead of my ear on the jawbone. Had needle biopsy yesterday to establish status. Lung tumour will be surgically removed IDC. If the face thing proves to be possitive they intend applying a drug called Ipilimumab and/or Interferan (not Chemo or radiation as apparently that is not effective against Melenoma). Should get results of Biopsy by Thursday or Friday. It appears this is the cause of the pain in my chest - hard to believe because my understanding is that Melanoma is painless.
Is this the right treatment?
Thank you all for your valuable input, much appreciated.
Kindest regards to all the worriors
Wally
The sun shines at the dawn of each new day even though it may not always be visible.

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bikerwife's picture
Replies 2
Last reply 7/25/2012 - 12:11am
Replies by: James from Sydney, Anonymous

Has anyone had gamma knife more than once. We had it in feb for 5 mets and they are gone. We have 2 new ones that will be gamma knifed on aug 13and I'm scared of having this procedure done again. Our dr told me to stop worrying that they got them the first time and can get them again. I do feel kinda at ease about.

Also he's still taking zelobraf which is working wonderful all tumors we could see are almost gone. Why doesn't it work in brain.

Thanks for the help

What God leads u to he will. Lead you through

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LynnLuc's picture
Replies 5
Last reply 7/25/2012 - 1:30pm

This is Brandon, and I am passing along what information we have right now. The two tumors that mom had radiation on a few weeks ago are bleeding, and that is the reason she is in the hospital. She is doing better, but information seems to be much slower coming from the doctors than before. She is going to have another scan to determine if the bleeding has subsided, but we do not know when. It will be within the next day or two. The first scan she had yesterday did reveal two new tumors in her brain. As of now, I know nothing more about those. I will be posting for the time being as the computer is proving to be frustrating for her (it's not exactly in the best of shape). I will pass along information as I recieve it

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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himynameiskevin's picture
Replies 18
Last reply 7/25/2012 - 1:21pm

This was yesterday's update... http://www.melanoma.org/community/mpip-melanoma-patients-information-pag...

I sent a few emails out for advice or trial options. One doctor replied to my email, he suggests to stop the Zelboraf, have the radiation oncologist address any growing lesions in my head, and then resume IL2 with or without Zelboraf. (after the break during radiation).

I did IL2 in September of 2010, my first therapy. I  tolerated it well, 14bags, and 9 bags. And although it wasn't my magic bullet, it did appear to get rid of the tumor in my liver. Maybe another round after every thing else I've done could be beneficial? Not sure if people ever have any luck trying IL2 more than once? Or doing IL2 while on Zelboraf?

Just want to see if any of you have any advice or insight on this. I truly trust this Doctor, he's been my guy since day one. But you've all been there since day one too, so your opinions are just as important. Any advice or insight would be appreciated.

-Kevin

 

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Thinking of her, praying for her, and sending her hugs!

Take Care,

 

Sherron, wife to Jim FOREVER

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Sherron's picture
Replies 4
Last reply 7/24/2012 - 9:02pm

Thinking of her, praying for her, and sending her hugs!

Take Care,

 

Sherron, wife to Jim FOREVER

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Gene_S's picture
Replies 2
Last reply 7/30/2012 - 7:23pm
Replies by: ToddC, Gene_S
The Healing Power of Our Skin

by Sandra Barger (2007)

Our skin is the largest vital organ of our bodies. It is a living, and functioning organ regulating temperature, protecting from bacteria and germs by the acidic properties, keeping everything in place and working with your kidneys and liver to detoxify. Our skin is the body's first line of defense. It is easily damaged by both external causes - sunlight, pollution- and internal factors such as smoking and diet lacking in vitamins.

 
Our skin has the ability to heal itself and remain healthy with the use of antioxidant vitamins, A, C and E both internally and externally. When you cut yourself your skin is able to repair itself and has the ability to recover from sunburn. Dr. Perricone from the "Wrinkle Cure" suggests that your skin can forgo a face lift with the use of topical antioxidants.
 
In recent years we have seen skin patches for nicotine/heart medication/sea sick/birth control because of the skin's delivery ability. What you put on your skin is absorbed into every organ of your body. According to Dr. Rita Goad if you peel a clove of garlic and but it between your toes within 26 seconds you will taste the garlic.
 
Today there are animal by-products used in skin care products that are toxic to our bodies. Dr. John Lee, MD. states in his book "What Your Doctor May Not Tell You about Menopause" that mineral oil absorption causes PMS symptoms and hormone imbalance. Mineral oil blocks the skin's natural breathing and excretion functions. Mineral oil can offer positive results when used for specific medical conditions such as laser surgery, burns and skin grafting in setting up a temporary protective barrier to aid in skin repair.
 
The Cancer Prevention Coalition Press release June 17, 2002 states: "Most scientists agree that cancer is initially caused by industrial chemicals and or radiation exposures.  Everyone comes in contact with these chemicals in food, water, air (Tobacco smoke), but the biggest risk now appears to be absorption and inhalation of chemicals in hair care products, mouthwash, cosmetics, lotions, skin care products, suntan products...etc"
 
The US government studied 3000 chemicals used in cosmetics and personal care products and found that: 1 in 3 of the ingredients were toxic, 1 of 3 were toxic enough to kill, 1 of 10 caused biological mutation and 1 of 11 caused reproductive problems. The FDA does not regulate the cosmetic industry as long as the manufacturer lists the ingredients on the label.
 
What is used on the skin effects everyone's health requiring consumers to educate themselves and read labels. By using pure, safe and beneficial products on your skin you can protect your self from absorption of toxic chemicals into your body.
 
With the use of botanical oils that resemble our own skin's natural oils the skin is able to absorb ingredients and work with them just like the oils that sit on the surface of your skin."
 

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

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Hi Everyone,

This week Community Health Resource Center is hosting a Melanoma Survivor Panel in San Francisco on Thursday July 26th from 4 pm - 5:30 pm. Panelists from stage I, stage II and stage IV melanoma plus an RN educator will be sharing stories and experiences. The panel will be facilitated by Social Worker, Kristy Buck who also facilitates our melanoma support group every third Thursday from 2 - 3:30 pm. Refreshments will be provided, and registration is free. Donations of any amount are accepted and appreciated. To register, call 415-923-3155 or email cpmcchrc@sutterhealth.org.

We offer educational events, support groups, health screening, and counseling to community members to support and maintain wellness and prevent disease. Information about all of our wellness events can be found at www.chrcsf.org .

We hope you can join us!

All the best,

-Melissa

 

Community Health Resource Center... the next step to better health

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Eileen L's picture
Replies 8
Last reply 7/26/2012 - 1:27am
Replies by: Eileen L, Harry in Fair Oaks, King, Jeff's Mom, Anonymous

Hi, folks. Just a quick update on what I am experiencing on the Hoffman-Roche BRAF/MEK trial. I had PET/CT about two weeks ago that basically showed my two tumors, one lung and one adrenal gland, had an overall 50% reduction in mass and are in no longer reactive. The radiologist thinks the remaining tumor might be just dead tissue. This is after only six weeks on the drug combo! Also, almost all of the side effects (rash on my legs, trunk, arms and face, joint pains, fever and chills, sores in my mouth, fatigue, sore feet and fingers) are gone except for the sun sensitivity. I just developed a new mild rash about a  week ago  on my abdomen that appeared during the week that I wasn't on MEK (this trial has me on the BRAF all the time and the MEK 3 weeks on, one week off) which resolved when I went back on the MEK.  

I am extremely pleased with the results! The biggest problem has been the number of appointments I have had. Since it is a Phase I trial they are keeping very close tabs of us at the beginning, with weekly lab draws, EKGs, doctor's appointments, etc. Now that I have been in the trial for eight weeks I go to monthly appointments, lab draws, and EKGs, and every six week PET/CT scans. I expect to soon glow in the dark from all the scans! 

Eileen L

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himynameiskevin's picture
Replies 12
Last reply 7/24/2012 - 4:27pm

Well this morning marks two years since being/knowing I was stage IV. A long journey it's been, and this mornings brain MRI has me feeling a little like I did two years ago. The images show some new tumors, there were a few tiny areas that were left untreated when I started Zelboraf. So maybe those, maybe a couple more? Radiation oncologist is going to get all the details out of the scans to have all the info possible come Wednesday morning, when I see her again, to discuss the options and treatment. I'm guessing more SRS or trying WBR for the first time, I don't know. She said they were small though, none over a cm. And told me not to lose sleep over it. I won't, I'm experencing a sense of calm, not sure what to make of that.

Anyway, I should have PETCT soon, not sure the protocol from here, if they're just going to take me off Zelboraf or if there are any options left. I may be out of the loop, I know most trials won't accept someone with brain mets. Despite the status of my head, I feel close to normal, no noticible strange neurological symptoms. If anyone knows something new I'm unaware of, I'd like to know. I've done IL-2, Adoptive Cell Therapy with young TIL and IL-2, a few rounds of SRS, Yervoy, and Zelboraf. Thanks in advance.

Warmly, -Kevin

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LynnLuc's picture
Replies 1
Last reply 7/23/2012 - 8:38pm
Replies by: Anonymous

 

Melanoma researchers have been struggling with this question: Which mutations drive this cancer that lead to ultraviolet (UV)-induced genetic damage in tumor cells caused by sunlight exposure?

There have yet to be any mutations conclusively tied to melanoma. The great quantity of these passenger mutations has pulled away from the search for genetic driver mutations that are most important in melanoma development and progression.

Scientists at the Broad Institute of MIT and Harvard, the Dana-Farber Cancer Institute and The University of Texas MD Anderson Cancer Center created a method to mark the drivers while amongst a great amount of passengers. They then found 6 genes with driving mutations in melanoma, three having damage inflicted by UV light which causes recurrent 'hotspot' mutations. The research can be found in the July 20 issue of the journal Cell.

Co-senior author Lynda Chin, M.D., Professor and Chair of MD Anderson's Department of Genomic Medicine, explained:

 

"Those three mutations are the first 'smoking gun' genomic evidence directly linking damage from UV light to melanoma. Until now, that link has been based on epidemiological evidence and experimental data."

"This study also is exciting because many of the recent large-scale genomic studies have not discovered new cancer genes with recurrent hot-spot mutations, a pattern strongly indicative of biological importance," added Chin, who also is scientific director of MD Anderson's Institute for Applied Cancer Science.

According to the researchers, each of the six new melanoma genes they identified are all significantly mutated and provide possible targets for new treatments.

Thousands of Potential Mutations Recognized, Only Need A Few Dozen Significant Ones

There had previously been a great deal of important mutations recognized as melanoma drivers, but they were falsely identified because the majority of these mutations do not seem to be caused by direct damage from UV light, including:

  • BRAF (V600)- present in half of all melanomas
  • NRAS (Q61)

Although those known mutations are valuable, there is still missing information. Compared with other types of solid tumors, Melanoma has higher genetic mutation rates. Most are attributable to passenger mutations resulting from damage by UV light, resulting in a DNA alteration called a cytidine (C) to thymidine (T) transition.

Chin, along with Levi A. Garraway M.D., Ph.D., associate professor at Dana-Farber Cancer Institute and Harvard Medical School, and senior associate member at the Broad Institute, used 121 melanoma samples paired with normal DNA and sequenced the exons (active portions of DNA that are involved in protein synthesis). The experts found 86,813 coding mutations. The consequential mutation rate was larger than in any other tumor type reported.

http://www.medicalnewstoday.com/articles/248105.php?sv=d
 

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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