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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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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mandamanda123's picture
Replies 16
Last reply 10/9/2012 - 9:47am

Hi, my boyfriend has been complaining that he has limited mobility following a complete lymph node dissection (underarm).  He said that it feels like a guitar string (maybe a nerve or a ligament?) was reconnected too tightly.  When he raises his arm to a certain point, he experiences a lot of pain and can go no further.  We can even feel the "string" from the surface of his skin.  It's been just over a month since the surgery.  Just wondering if anyone else has experienced this.  Thanks.

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deardad's picture
Replies 11
Last reply 12/14/2014 - 5:13am

Hi this sounds a bit far fetched and I am sceptical, but I'm just wondering whether there is any substance or medical research related to the theory of ingesting baking soda on a weekly basis to decrease the acidity levels that is required for cancer to spread?

Has anyone tried this?

Nahmi from Melbourne

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goldengirls2011's picture
Replies 5
Last reply 4/20/2012 - 11:43am

Is anyone going to this event this weekend? Since I live in GA, I registered for it. I'm walking in memory of my Aunt Janet, who was a warrior for 15 years.

I hope to meet some of you if you are attending.

I was fortunate to find my melanoma very early (stage 1a).

Although I never post here, I frequently read the boards here - as it's a great way to get better educated on this beast.

Sending lots of postive thoughts & prayers to each & everyone of you!

Work hard, but play harder.

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Jeff's Mom's picture
Replies 20
Last reply 4/21/2012 - 10:31pm

Brain MRI is clear (last one was February 3rd)!!!  Jeff will have body scans at the end of this month, and we are hoping to see some shrinkage of those liver and lung tumors.  RELIEF!!!!

Bridgette (Jeff's Mom)

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Following a stage 3 diagnosis, a complete lymph node dissection was performed with the following final diagnosis: "Twenty-one reactive lymph nodes with melanin containing histiocytes. Changes of previous bipsy site with melanin containing histiocytes."

The surgeon who read the report told us that this was terrific news, and that there was no evidence of melanoma in these 21 lymph nodes or other tissue, but he said that we should discuss the pathology further with a medical oncologist. We have an appointment next week, and before announcing the good news to everyone, I want to try to understand why the lymph nodes were reactive if they weree cancer-free, and why the histiocytes were mentioned.

If anyone has any insight into this pathology, we would greatly appreciate it. Our next step is to enroll in the ipi/interferon clinical trial, no matter what these results show. Thank you so much.

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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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aldakota22's picture
Replies 8
Last reply 4/19/2012 - 6:52pm

Saw Dr. Anna Pavlick at NYU on Monday.Highl respected melanoma specialist & compassionate dr.. Knows I traveled to see her so made sure cat scans & MRI of brain (never had one done) scheduled and approved that afternoon.Last cat scans were done 7-29-2011.Neither her or I could understand why my prior oncologist waited so long.Been on Zelboraf since 9/12/11.My scans show reduction of 50-75%.No other tumors other than orignal site and brain MRI is clear.Always told had a clear head now i can prove it.Just wanted to share positive news with everybody .Read enough negative posts its always good to post positve results.Pray everyone fighting can post good news.All the best to all .  A very happy Al

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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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natasha's picture
Replies 2
Last reply 4/18/2012 - 12:11pm
Replies by: natasha, TSchulz

Hi!

I am sorry for posting to many questions here .but I am still confused over some parts of my path report.

The conclusion of my report sounds as  '' This is a severely atypical melanocytis lesion. The lesion is small and not all the features of melanoma are present , but , at worst , the appearanse could represent an early superficial spreading melanoma.No vertical growth present.  Diagnosys Melanoma radial phase AT WORST.''

What does this at worst means?

Looks like they are not sure I had melanoma at all.

Did anyone have the same confusing report?

Thanks a lot for all uour support

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Jeff's Mom's picture
Replies 7
Last reply 4/18/2012 - 9:48pm

Quick question - is anyone on the Yervoy/Zelboraf combination trial?  It's being offered at Dana Farber, UCLA and Sloan.  It looks like prior Zelboraf is an exclusion, but we are not sure.  Here's the link and information from UCLA's Jonsson Cancer Center:

http://www.cancer.ucla.edu/index.aspx?page=51&id=10964

Jeff is now on Zelboraf and doing well (side effects are mild), but we would like to have a real secure Plan B in place and this trial looks promising.  Also, has anyone heard of a Zelboraf/Anti-Pd 1 trial coming up?   

Thanks,

Bridgette (Jeff's Mom)

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/19/2012 - 4:52pm
Replies by: Anonymous, Janner, ckratina, LynnLuc

I was recently diagnosed with Melanoma in situ on my neck in March of this year.  Had WLE performed a couple of weeks later and pathology report came back clear.  I now have developed  a swollen lymph node directly  below the Incision.  Should I be concerned or am i just being paranoid? The original biopsy was done with a shave rather than excision even though my derm suspected it was a melanoma.  I understand that melanoma in situ is located in the epidermis and non invasive.  The surgical oncologist told me that he was going to take 1 cm margins because the melanoma was in the margins of the orginal biopsy.  I am going back to the surgical oncologist for a follow up visit in 1 week.

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DustinP's picture
Replies 1
Last reply 4/18/2012 - 6:15pm
Replies by: teach

My name is Dustin and I am currently a 3rd year medical student.  I volunteer with a group named Outrun the Sun, which supports melanoma research and skin cancer prevention education.  I wanted to invite you to learn about and participate in our first annual national Race in May.  This event will complement our 8th annual Outrun the Sun race in Indianapolis, IN.  

The Race in May is a "virtual, yet real" run/walk that will occur throughout May (National Melanoma and Skin Cancer Awareness month) and anyone can participate no matter where you live.  You can make this event whatever you want it to be by creating a team or by participating on your own. Here's a link to the registration web site. www.raceinmay.kintera.org.  

Outrun the Sun, Inc. is dedicated to building national awareness of melanoma and other skin cancers, educating communities about preventive measures that reduce melanoma’s incidence rate, and to raising funds for melanoma research, leading to effective treatments and a potential cure.  For more information on Outrun the Sun please visit our website www.outrunthesun.org

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imissmommy2003's picture
Replies 1
Last reply 4/18/2012 - 11:12pm
Replies by: KRob

Hello my name is Mariah Larsen; I am 17 years old and I lost my mother to melanoma in June of 2003. I am currently a Junior at Rogers High School in Spokane Washington and am working on my culmanating project. My project is on melanoma. I want to do a docudrama on the effects of melanoma. I would really love it if a parent has lost a teenager to melanoma, that is willing to be interviewed for a good cause, to email me, or reply to this post. If you are willing to do this, please put the subject as Help with senior project. Thank you for your time

Live Life to the fullest, and live with no regrets because at one moment, because at one moment it is what you wanted. Music is life. Love your mommy no matter what.

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BarbieGirl's picture
Replies 7
Last reply 4/20/2012 - 12:14am

I spoke with Allen just a bit ago, and found out his wife, Carol, passed away peacefully on April 14th.  A 'celebration' of her life was held today.  Even though Carol didn't have melanoma, I feel this needed to be posted on the main board.  Allen hung around here for many, many years sharing his knowledge, wisdom, encouragement, hope and grief with so many.  His family is there with him, and he said he's doing okay; just glad that Carol is now pain free in Heaven.  Carol and Allen would have celebrated their 40th wedding anniversary this year;  and she spent many of those years by Allen's side, fighting this beast.  She encouraged him to do what he felt he needed to do, and go where he felt he needed to go, to fight his melanoma.  Allen hasn't posted much here since the bulletin board changed, and his computer crashed, so he lost all his contacts.  If you'd like to contact him, his email address is redneck_77 @ att.net (no spaces).

I've met Allen--he even stayed overnight once in my barbie room! =)  I wanted to meet Carol sooo much, especially when I was in Ft. Lauderdale last summer, but things just didn't work out.  I chatted with her on the phone several times over the last few years.  My heart is breaking right now.  Please keep Allen and the family in your hearts, thoughts and prayers.

I love you, Allen, and I'm so sorry.  There are no words, only tears......

*Hugz* from my heart to yours,

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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