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 all,

I'm from BC Canada. I'm looking for others in my area. I'm also looking for all the latest up-to-date info on Melanoma and treatments etc. My biggest concern is that I'm not getting the closest follow-up that I may need. I was diagnosed with Melanoma in March of this year. It was on my right calf. I had a flat mole there that was about 5-6 mm - not round but not too wierd looking. I noticed that I had to be more careful shaving my legs last December as the mole was more raised. Then by the end of December I was catching the razor on it. I didn't think too much about it until January, when a skin coloured "tumor" started to grow on one half of the mole. I knew I had to have it looked at but was "too busy." I finally had it looked at mid-February and my family physician removed it and 2 other fast growing moles. I didn't think anything more about it as my doc didn't seem too concerned. I got the "phone call" March 10th. It was a Nodular Melanoma Clark level IV and Breslow 2 mm Mitosis <2/mm. I had a wide excision and sentinel lymph node biopsy March 31. The surrounding tissues and lymph nodes were negative putting my staging at IIa. The other 2 moles were benign. I also had 3 Clark's nevi removed in May. My surgeon, who specializes in melanoma, wants to take more tissue from around the nevi removed from my back.

My concern is that I'm wondering if they should have been doing CT scans or anything else to make sure I didn't have anything else going on. I feel I'm a little of an oddity as my surgeon said usually older males have this type of melanoma on their scalp or shoulders from too much sun exposure. And everyone that knows me, knows that I don't go out in the sun much. Since I was pregnant with my 12 yr old daughter, I've been heat intolerant and always sit in the shade. I'm the one under the umbrella at my daughter's soccer games. And not when it's just raining either. My legs have really never tanned or even burned, but I'm fair haired (naturally that is), green eyed, have more than 50 moles (more like 50 per sq inch - lol), and burn rather than tan. I use 50 sun screen. But I also grew up in the era of no sun screen and playing outside in the sun all day when I was a child. Had plenty of very bad burns - but not on my legs. Go figure.

I would enjoy hearing from everyone and look forward to meeting more people in my position. I know I'm one of the lucky ones but also know I have a life-time of vigilence ahead of me.

Cheers,

Carolyn

Live life to the fullest. Laugh lots. Love deeply.

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Radiation Blast May Turbocharge Bristol-Myers Melanoma Drug, Report Shows
By Robert Langreth - Mar 7, 2012 2:00 PM PT

Radiating one tumor can trigger the immune system to wipe out tumors in other parts of the body and may boost the effectiveness of Bristol-Myers Squibb Co. (BMY)’s cancer drug Yervoy, doctors have shown.

Researchers at Memorial Sloan-Kettering Cancer Center are reporting on the case of a 41-year-old woman with advanced melanoma who took Yervoy, a drug that stimulates the immune system to fight cancer cells, in a clinical trial. She didn’t respond to the medicine until she got a radiation treatment to shrink a tumor on her lung that was pressing on a nerve and causing severe back pain.

Soon, all the other tumors in her body started shrinking, according to the results published in theNew England Journal of Medicine. The case is the best demonstration to date of a rare phenomenon called the abscopal effect, in which radiation to just one tumor causes other tumors all over the body to regress, said Charles Drake, a medical oncologist at the Johns Hopkins University School of Medicine not involved with the study.

“It is a really amazing finding,” Drake said in a phone interview. “It confirms that this effect can occur.”

The broad tumor shrinkage was associated with changes in the immune system that occurred after the radiation treatment, according to the report.

Harnessing the effect may enable researchers to boost the response rate to Yervoy, said Memorial Sloan-Kettering’s Jedd Wolchok, an oncologist and senior author on the case study. The radiation-linked response may occur because the radiation creates cellular debris that the immune system recognizes as dangerous, he said.

Immune System Brakes

Yervoy for melanoma is the first in a new class of drugs that removes molecular brakes on immune system cells that prevent them from attacking cancer. While it improves survival by four months, the drug causes major tumor shrinkage in 10 to 15 percent of melanoma patients. Doctors are looking for a way to improve on this.

Valerie Esposito, the radiation patient in the study, started getting Yervoy in September 2009 and didn’t clearly benefit at first. “She was definitely getting worse” until she got the radiation in December 2010, said Wolchok.

Yet when doctors performed a scan a few months after the radiation, six tumors in her spleen and two more in her lymph nodes that had not been radiated shrank dramatically, he said.

Surprise Phone Call

Wolchok called Esposito with the news as she was driving home from an appointment at the cancer center last spring.

“He was like, you won’t believe it, but your tumors shrunk drastically,” Esposito said in a phone interview. “It is amazing, it is a wonderful thing.”

Esposito, a government clerical worker and single mother raising three kids on Long Island nearNew York City, said she hopes her case can provide clues for doctors how to help other melanoma patients.

Wolchok said that a second melanoma patient on Yervoy at Memorial Sloan-Kettering had a similar body-wide response to local radiation treatment just a few weeks ago.

Wolchok is working with several major hospitals to start a clinical trial that would combine Yervoy and radiation to see if doctors can duplicate what happened to Esposito on broader numbers of patients, he said. It could begin in six months.

Sarah Koenig, a spokeswoman for Bristol-Myers Squibb Co., based in New York, said in an e-mail that the company is aware of the Sloan-Kettering case report and considers it “an interesting finding.”

Bristol-Myers is studying whether Yervoy’s effects can be enhanced with radiation, she wrote. One example of this is a trial the company is conducting of Yervoy in patients who have received radiation for advanced prostate cancer, she said.

Yervoy generated $360 million for Bristol-Myers in 2011, according to data compiled by Bloomberg.

To contact the reporter on this story: Robert Langreth in New York at +1-212-617-1886 orrlangreth@bloomberg.net

 

http://www.bloomberg.com/news/2012-03-07/radiation-blast-may-turbocharge-bristol-myers-melanoma-drug-report-shows.html

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Yervoy was featured on the Nightly News tonight. Here is a link http://www.msnbc.msn.com/id/3032619/ns/nightly_news/#46660604

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Luvmycuz's picture
Replies 2
Last reply 3/7/2012 - 7:39pm
Replies by: KRob, Lynn1962

My cousin was just diagnosed this week with metatastic melanoma, it traveled to her liver. We are devastated by this. She lives in NC and and I am twelve hours away in NY. I am hoping that someone can tell me what I can do to help her. As sad as I am I cannot imagine the pain she must be in and I want to do all that I can emotionally and educationally to support her.

Lifedoesnotrewind

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himynameiskevin's picture
Replies 8
Last reply 3/7/2012 - 7:13pm

I finished two rounds of SRS yesterday and today, to hopefully clear up my brain. Everything treatable has been treated, anything lingering, if anything, are too small to do anything about right now anyway, the additional noted "spots" are no bigger than 1mm or so and although unlikely, the doctors and I will continue to hope they’re just blood vessels or something that won’t show up in a future MRI.

I received an unexpected phone call today and it turns out my prescription for the Zelboraf has been approved, processed, shipped and I should be able to pick it up at 1pm tomorrow, not in two weeks as was expected and planned. So this is great news. Relieving. :) As with anything, I know there’s no guarantee it will work, or how it will benefit me... how soon, or for how long, what side effects I’ll experience. But I’ll be doing something that may work, something I may benefit from, maybe quickly, for a long time, with minimal side effects. It's something proactive I've been waiting two months for, and a step in a direction that could potentially save my life. So I feel good about that. I just have to stay focused, and continue to plan, hope, pray for the best possible outcome. Thank you all for being by my side through all of this. Here's to tomorrow and the next leg of the journey. -Kevin

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Shelby - MRF's picture
Replies 1
Last reply 3/7/2012 - 7:10pm
Replies by: KRob

I'd like to compile a list of melanoma support groups by state and make it available as a patient resource on our website.  If anyone has any information about a melanoma support group in your area or state, will you please provide me with some information on the group?  All information can be sent to smoneer@melanoma.org or education@melanoma.org.  Thank you in advance!

Shelby - MRF Health Educator

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Mrsgkr's picture
Replies 6
Last reply 3/7/2012 - 7:04pm

My husband Gary was diagnosed with stage 3c back in September 2011. He had a wle and lymphadenectomy on Dec 8, 2011. He has already had a recurrence and no treatment has been started. He had yet another biopsy done on March 1. No call from the ordering doctor yet, but we were able to go to the hospital and get a copy of the report. It was finalized and sent back to the ordering doctor the following day. This makes my husband feel like this doctor doesn't want to do anything to help. I am going to call other doctors tomorrow for my husband to see. Maybe one of them will help. Doing some form of treatment is better than none at all.

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So went to the dermatologist yesterday for a black mole looking spot under my nail.  Long story short thought it was a bruise, had it since 2008, always had nail polish over it and didn't pay any attention to it.  I am having surgery and biopsy on Friday and I am in disbelief of this whole situtation. I never even knew this existed.  I had been to the derm before to have moles removed, all the while this was on my toe and I wasn't paying attention to it.  Anyways I was wondering if there are any stories of of others who have this.  I am 35 yr old white female and it looks as if this is pretty rare for my demographic. I am trying to stay away from studies I am reading because I have read the 5 year survival rate was only 40%  in subungal melanomas on the toes. Any insights? Thanks in advance :)

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Jewel's picture
Replies 18
Last reply 3/6/2012 - 9:58pm

Hi Everyone,

Please forgive me for needing to rant a little. I just don't understand why SO LITTLE is being offered to Stage 3 people....basically they look you in the face and say you NEED to get worse (stage 4) before we can help you. I'm just frustrated.....and sad for everyone that is fighting this disease.

Best wishes to everyone,

Jewel

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Replies by: triciad, lhaley, Lisa13

Hi Everyone,

I just wanted to know who started ipi after finishing gamma knife?  I know Kyle is one of the people, so I wanted to know if there is anyone else?  I havn't had any steroids and I don't want to take any as I know it could mess up the ipi.  I might have to though, cause I do feel a bit of weakness in my right hand and it's quite possible it's the edema and I don't ever know if the ipi is causing inflammation.  I'm really hoping that ipi this time around keeps any other tumours growing and thankfully, I'm going every 2 months.

Thanks,

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Hi,

I am pleased to announce my new practice location. I will officially be seeing
patients beginning May 1 but will see patients on a case by case basis if it is
medically important to be seen before then. Please feel free to forward my
contact information to anyone who needs to reach me.

Please request a copy of your medical records from The Angeles Clinic and they
can then be transfered to The Beverly Hills Cancer Center's state of the art
electronic medical record. The Beverly Hills Cancer Center(BHCC) can help
facilitate this for you. The BHCC is 1 stop shopping with patient care, imaging
including MRI, PETCT, Breast MRI, bone scans etc., a beautiful infusion center
for chemotherapy, radiation oncology, surgical oncology, full lab, research
clnical trials, psychosocial support and nutrition. A more formal letter will
come soon but I know many of you have been waiting to see me for some time. I
would be honored to resume your care.

I look forward to reconnecting with you soon.

Warmest regards,

Steven

Steven J. O'Day MD
Director, The Los Angeles Skin Cancer Institute
Director, Clinical Research
The Beverly Hills Cancer Center
8900 Wilshire Blvd
Beverly Hills CA 90211
310-432-8900
soday@bhcancercenter.com
Clinical Associate Professor of Medicine USC
Adjunct Professor, John Wayne Cancer Institute

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/6/2012 - 3:15pm

Hello everyone,

I am Stage 1 patient, almost 8 years post-diagnosis.
For 3 weeks now I have persistent sore throat and it scares me very much. I went to the PCP who did strep nest: negative. The ENT didn't find anything suspicious in the throat also when he used the mirror to look down to the larynx. However, he said that it could be acid reflux related because the entrance of my esophagus is raw and inflamed. He prescribed omeprazole. Well, after 1 week on omeprazole, it is not much better. I cannot locate the pain: sometimes it feels on one side on the throat, sometimes on another when I swallow. Have anyone experienced anything like that???? This sore throat drives me crazy. Thanks for listening.

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Luvmycuz's picture
Replies 4
Last reply 3/6/2012 - 3:11pm

My cousin was just diagnosed this week with metatastic melanoma, it traveled to her liver. We are devastated by this. She lives in NC and and I am twelve hours away in NY. I am hoping that someone can tell me what I can do to help her. As sad as I am I cannot imagine the pain she must be in and I want to do all that I can emotionally and educationally to support her.

Lifedoesnotrewind

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Kellie-T's picture
Replies 3
Last reply 3/6/2012 - 11:05am

For those that are taking Zelboraf; I'm experiencing joint pain which seems to come and go (changes from left wrist/hand to right wrist/hand and left shoulder/right shoulder). I'm also getting a sore throat which also changes from left to right. Pain in my heels also but that was expected. I also run a low fever sometimes. I started 8 pills a day on the 14th of February but stopped on the 21st due to extreme side effects (face swelled and developed terrible rash). The doc reduced the dose and I started back on the 24th of February at 6 pills a day.

Have any of you experienced any of these side effects? Did you take any OTC's to help with it?

 

Thanks,

Kellie

Life is not by accident. Make every minute count.

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Rebecca and Bob's picture
Replies 8
Last reply 3/6/2012 - 10:38am

We got Bob's CT and MRI results and all is good, so we will hang on to NED and celebrate tonight. They said he could come back 4 or 6 months. They are finally saying six months which is great for us, I think we will keep it at 4 and then when he goes in July that will be 3 years from his last surgery. If all is good at that time we will feel better about 6 months.

Thinking of everyone else dealing with Stage IV melanoma and praying for a cure daily. 

 

Rebecca

Believe

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