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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himynameiskevin's picture
Replies 11
Last reply 3/17/2012 - 7:57pm

Tomorrow I'll be one week into Zelboraf. So far so good I think. No noticeable side effects yet, possibly some fatigue and weakness, but I've been experiencing that quite a bit the last two months as my sleep schedule and normal activity have been out of sorts, and with the other two meds I'm on. I've been avoiding the sun as recommended. I think being on the drug has done a lot for me mentally, doing something proactive has me feeling pretty optimistic and hopeful.. I've been feeling close to my ol' self the majority of this last week. This morning though about 20-30 mins after my dose, right before breakfast, I suddenly felt fatigued and kind of shaky. Having two seizures a month and a half ago, the fear of having another or not knowing this feeling I was experiencing.. paranoia and anxiety arose and I think was making it worse. I stayed calm, breathed deeply and the feeling faded after a few minutes, but it's kind of left me shaken me up today and has made me a bit nervous. I read that there is a rare side effect with Zelboraf that can effect you heart rate or something that can lead to dizziness and fainting. Sounds scary... not helping with this nervousness I was just getting over... But hopefully it wasn't that.. maybe it was nothing.. maybe it was a mini anxiety attack, maybe I didn't drink enough water with the dose, or maybe it was from a lack of a good nights sleep and an empty stomach.. I don't know. :/ Anyway, besides this little thing today, I'm feeling pretty good all things considered. I've got an appointment with my oncologist in a week to schedule scans and what not. Hopefully they'll say something good. And that's it for now. As always, thanks for the support, thoughts, and lending listening ears from time to time. It is all so appreciated. -Kevin  

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Judy D's picture
Replies 5
Last reply 3/20/2012 - 6:20pm

Thought I could go to Hawaii with my daughter especially if I was carefull, WRONG!  I stayed under the umbrella, used high spf sunsreen but still got severely burned or more like sun poisoned.  Severe blistering on my feet, swelling and rash on arms and back. I just want to warn others to be extremely careful so that this wont happen to you.  Vacation to Mexico not going to happen.

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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yoopergirl's picture
Replies 4
Last reply 3/15/2012 - 4:20pm

First of all I like the doctor, he is much more informed about Melanoma but he did tell me that he doesn't think the Yervoy worked for me since I have 4 new growths on my arm, he is ordering a cat scan and a MRI for the 26th, said a pet scan does not look at the brain. Also said he would have done the same thing as the other oncologist did, put me on high strength prendisone since my stay in the hospital was one of the bad side effects. I chose to stay with this doctor in Madison. He did mention maybe chemo or PD 1 if the yervoy did not work. I did read where sometimes the tumors grow while on this drug but he did not seem to think so, he will be consulting with Dr Albertini on Thursday. I came out of there pretty down in the dumps but I have to pick myself up and fight this cancer with everythin they can give me. 

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bikerwife's picture
Replies 5
Last reply 3/15/2012 - 10:44am

My name is Belva I am the wife of Lynn he is battling melenoma. I am new to this forum. Looking for support in dealing with dreaded disease. I feel alone and helpless. We have had WBRT by a doctor who never had any dealings with melanoma. Have had gamma knife to five lesions on brain. That was a breeze.

We have transferred to musc in charleston south carolina. Our new doctor and his staff are wonder. He is a melenoma specialist and very up to date. Had 3 ippi treatments after. Second noticed new tumor growth. Dr said this happens at times and didn't seem concerned. Iasked about blood work said it was good.

This is scary to watch. Thanks for listening and may God be with each of you. God heals and I'm holding on to this.

What God leads u to he will. Lead you through

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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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Phyllis in IA's picture
Replies 6
Last reply 3/19/2012 - 10:01pm

My son lives in Chicago and has been seeing Dr. Shea at the Univ. of Chicago.  He's been very pleased with the care, but somehow because of the way they bill and the fact that his office is in a hospital, his insurance doesn't cover his appts.  He asked me if I knew of another derm in Chicago that would be highly recommended, and I told him I would ask here.  An added plus would be if it could be someone on the north side (he lives in Logan Square).

Phyllis
 

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Eileen L's picture
Replies 5
Last reply 3/15/2012 - 4:52pm

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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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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JoshF's picture
Replies 6
Last reply 3/20/2012 - 7:13am

OK...finally get some scanziety. Tomorrow I have 3 month scan follow up which puts me just about 1 year mark. I'm not sure what year 2 plan is as medical oncologist thinks I can go to 6months and just neck & chest. Surgical oncologist thinks I should stay on 3 month and continue neck to pelvis and braqin MRI every 6 months. Better safe than sorry I guess. I better just get through tomorrow with NED. Scan at noon...see doc at 3!!!! God Bless All!!!!

Let's work for better treatments....for a cure!!!!

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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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eerye70's picture
Replies 13
Last reply 3/17/2012 - 1:25am

http://www.caringbridge.org/visit/kelliedykstra  I have been following several warriors on here for some time. I just loved Kellie's personality and fighting spirit. It seems as if melanoma grabs hold of the most amazing people. Kind of makes you want to be dull and boring for protection. Anyway, i get Caring bridge updates on her and her sister updated the caring bridge site of her passing. I waited to see if there would be an update here and when it didnt happen, i thought i would post. I don't want to overstep my bounds, but i thought some who had been following her posts would want to know. She was on another trial and at home with family doing well. Her last post was at Valentine's day. she had been updating almost daily, and it seemed as if the worst was sleepiness and nausea. But then when she didnt post for a week, it was not good. Seems she got admitted to the hospital for pain control and then taken off the study and went home with hospice. Her sister said her passing was painfree and peaceful with her family around her.

Again, i didn't want to overstep anything, i don't know her personally but i felt like she was family and i thought others might want to know. Debbie

Time to put on your big girl panties and deal with it!

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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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kjshaner444's picture
Replies 8
Last reply 5/31/2012 - 11:04am

Hello-

Question #1: I am really close to the end of my 12-months of Tx (Interferon, i.e. Intron-A, subcutaneous injections, 3 times/week). So, what nexxt? 

Question #2: Any feedback on photography as an adjunct to visual inspection for surveillance for malignant melanoma would be helpful (I appologize if the subject has been discussed in prior posts here).

Thank you all, so much.

P.S. Thank you Carol Taylor. Your kind response/prayer to my prior post has helped me so much these past 12 months. 

Karen

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