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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Wilfred's picture
Replies 6
Last reply 4/24/2012 - 9:18pm
Replies by: Wilfred, gabsound, Linny

While spreading sunscreen (SPF 50) on my left bicep in February - in Jamaica at the Jamaica Inn where I thoroughly enjoyed myself - I notice a lump that had not been there before. I showed it to my wife and to my sister-in-law who is a nurse. They thought, as did I, that it was something to report to my doctor as soon as I got back to the US. WE got back to MD on Sunday evening, Dr D saw me at 3:00pm on Monday. The lump is about 1 inch in diameter and on the inside of my left arm. Dr D examined me and took a cell sample by aspiration. He gave me an order for a PET/CT and asked me to get it done ASAP. On Thursday of that week, 3/8/12, I had the PET/CT done at Capital Health Hopewell Hospital.The next day Dr D called to say the results were not good and that he wanted me to see Dr Scharfman at Hopkins.  I then went to Kentucky to spend a week as chaperone to some Portsmouth Abbey School students working on an Appalachia Service Project. Yesterday I picked up some CDs of the scan from the hospital to take with me to Dr Scharfman's on Thursday. A copy of the written report was in the envelope.

The report is 4 pages; good news can be reported in a sentence. There is a lot of terminology in the report that I do not understand. While reading it again last night,I used Google search to help me with various terms. For example: an SUV of 9.4 in my left bicep, intense uptake in the region of the pancreatic tail, focal abnormal uptake right hiliar region with suspected nodule of 7mm and an SUV of 15, intense focal uptakes within the left upper abdomen and mid abdomen, uptakes in my legs, lungs, colon. There are mentions of other uptakes in other places as well. The part that really bothers me is the in the Impression section: "Multiple focal areas of increased metabolic activity consistent with metastatic melanoma."

So...finally... I get to my point. What are the questions that I should ask Dr Scharfman on Thursday afternoon? This is the eighth time the M word has been used next to my name. I am positive and upbeat, worked my *** off down in Kentucky and told funny stories to the kids. My wife and children are very supportive and I am not afraid of the future. But I do want to understand what all this means before I meet with Dr Scharfman. Thanks, Wilfred

If you fight, you may lose, If you don’t fight, you will lose.

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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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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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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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Hi MPIP members,

A reporter fora majormagazine is developing an article about treatments for different cancers and she reached out to the Melanoma Research Foundation in hopes of speaking to a female melanoma survivor with a history of using Zelboraf. The reporter is hoping to speak to a woman in New York City and age 40 or above.

If you are interested in sharing your story, please complete this survey http://www.surveymonkey.com/s/JQH7V56by April30th.

Thank you to everyone within the MPIP community for your help in educating the public about melanoma! 

Shelby - MRF

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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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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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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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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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himynameiskevin's picture
Replies 20
Last reply 4/23/2012 - 11:56pm

Hi everyone, I've been meaning and wanting to update, just haven't had anything to update on. But as of today, I've been on Zelboraf for six weeks, no noticeable side effects yet, not sure if that's a good or bad thing. One day I could feel the sun effecting/warming my skin a little quicker than normal. So I headed inside and have been really smart about my exposure since then. UPF clothing, umbrellas and such, and keeping a good eye out for any changes in my skin.

As for the good news, I had a PET/CT on Monday, my first one since starting Zelboraf. The report states that the things in my lungs are getting smaller. Finally. :) Of all the tumors/nodules in there, the largest, which was 4 - 4.5 cm in diameter a couple months ago is now reported at 2.5 -3.5 cm I think. And everything else inside me appears to be clear and normal. I know with Zelboraf, it’s most likely just a temporary fix, but maybe not, I've heard of a few people going on a year or two on the drug, and that gives me hope. Either way, it's a start, and will hopefully buy some time, maybe open up some other options. As for that steroid I'm on, I’ve tapered down from 4mg/morn and 4mg/night to just 1mg in the morning with just under a week to go until I'm completely off it. That'll be great, for it's had me feeling pretty crummy from time to time the last two months. I’ve got a follow up brain MRI on May 1st, and a couple appointments the following week, to talk and schedule another body scan. And that's it for now. Hopefully I'll be back to read and write more good news. Until then, always hoping for the best, for all of us.

-Kevin
 

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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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Lisa13's picture
Replies 24
Last reply 4/23/2012 - 6:09pm

Why is this happening??  Why would my brain tumour be growing since I had it done last November and now they say there's nothing they can do. Why can't people by resected or cyberknife!!

Some body help. I'm completely freaking out.

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

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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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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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alicia's picture
Replies 8
Last reply 4/23/2012 - 11:51am

Hello friends, I've been hanging around this board since 2006 when I was first diagnosed with stage 3 melanoma at the age of 24. I first off want to thank you all so much for your encouragement, advice, wealth of knowledge and most of all your support. Anyways after the surgeries and the interferon year I didn't think I would ever have to deal with melanoma again, especially since all my scans came back good. With each year that passed and each scan the more and more I forgot about melanoma. After the birth of my second child I developed two new primary melanomas about 6 months apart from each other which shook me just a bit. The most recent primary was jan 2011 and it was stage 2 so I had to go through the SNB/ lymphoscintigraphy thing again but thankfully the nodes were neg:-) but since the new recurrence my oncologist decided to scan more frequently than once a year. Within that same year my best friend (who was also a stage 3 melanoma patient 1.3mm lesion Clark's 3 w/ +SNB) found out on a routine scan that his cancer had returned to his rt lung. He had the rt upper lobe of his lung removed and since he couldn't find any treatment for surgically resected melanoma (stage4) he did the watch n wait with scans (his lung surf was in July 2011) by nov 2011 he began urinating black liquid and was feeling very lethargic and having night sweats. He came to the dr for scans and found out the melanoma spread to his liver, lungs, spleen, and bones. He started zelboraf but his tumor burden was so high by the time he started that he didn't even respond to it. He passed away feb 13, 2012 with his family , me and a select other friends by his side. After experiencing his battle and death from melanoma it absolutely terrifies me about scan time. I've never been like this before but I feel completely smothered at times from the anxiety this disease brings. Just last Friday I had a biopsy of a new skin lesion and I'm usually not like this but I can't sleep because I'm thinking about this lesion and praying it's not another melanoma. Normally I cope very well with this disease but since my friends death I've been having a really hard time, especially since its scan time and I'm waiting on biopsy results. My friend name is Joseph Allen Stevens. He had just turned 33 and was a brilliant ER nurse abd very athletic.he will forever be missed and loved. Thanks for taking the time to read this. Much love and God Bless,

Alicia

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