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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http://forums.poz.com/index.php?topic=15632.0;wap

9 pages long.  I am still reading it.

I'm me, not a statistic. Praying to not be one for years yet.

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Everymoment's picture
Replies 11
Last reply 8/2/2013 - 7:02pm

Keeping my fingers crossed. The guy doing the scan said I did a nice job of holding still. I then replied, "did I light up???!" He said that question was above his pay grade. It's crazy that right now someone knows what's going on with my body and I don't! 

Thanks for all of your nice thoughts!

Isabell

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Hi All,

The MRF is working on an expanded educational initiative that would require the expertise of a nurse or nurse practitioner who specializes in melanoma. He or she would need to be able to speak comfortably in front of an audience and be knowledgeable on topics like: managing treatment side effects, lymphedema, psychosocial issues of a diagnosis, etc.

I am looking for recommendations from you. Has anyone had a really wonderful experience with a nurse or nurse practitioner? If so, please let me know by emailing me directly at smoneer@melanoma.org. Thank you in advance for your thoughts!

Sincerely,

Shelby - MRF 

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Zippydodah51's picture
Replies 1
Last reply 7/31/2013 - 11:14am
Replies by: hbecker

Hi, I am writing for my sister Roberta. She has stage 1V Melanoma. Her tumor is to large to do surgery. They just started her on this drug. She is having bad side effects & had to stop it for now. Severe joint pain & burning feet. Anyone else been on this trial drug?

I am trying to learn all I can to help my sister.

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awillett1991's picture
Replies 7
Last reply 8/1/2013 - 10:03am

Scans show no new signs of Mel and cardiac tumor is shrinking just enough to stay on the trial. I will rescan and they will reevaluate in 6 weeks. The worst side effect is fatigue. I also have chills in the evenings and sweats at night. I'm having trouble w my protein, my ALP, and hemoglobin keeps dropping below 9. Otherwise, much easier than other therapies I've tried. I am thankful to God for every day.

Amy

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Tim--MRF's picture
Replies 5
Last reply 8/1/2013 - 8:10am
Replies by: Phil S, casagrayson, Anonymous, Charlie S

The FDA has proposed more stringent control of tanning beds, citing extensive data showing the ties between UV exposure and skin cancer, including melanoma.  Their proposals are currently open for public comment, which must be submitted by August 7.  

So far they have received over 500 comments--more than 300 of which have been written by owners of tanning salons.  In other words, 60% of the comments are from people who are arguing against the new restrictions.

If you believe we need better control of tanning beds, you can submit your comment to the FDA.  This site gives all of the details:  http://www.melanoma.org/learn-more/your-action-needed-fdas-proposal-reclassify-tanning-beds

Just a quick word on why I am asking you to consider this.  We know that not everyone who tans gets melanoma, just as we know that not everyone who smokes gets lung cancer.  But we also know without a doubt that tanning elevates the risk of skin cancer, including melanoma.  The best estimates I have seen suggest that at least 80% of all melanomas are tied to UV exposure.  That might not be the only factor, but it is a significant factor.  We know that tanning beds emit levels of UVA and UVB, and that those levels can vary widely from bed to bed.  We know that tanning creates a low-level addictive response.  And we know that tanning salons are marketed to young people.  

In short, we have a known carcinogen that is addictive and is being sold to teenagers.  

Tanning salon owners argue that these regulations will hurt business, and that they reflect a "nanny state" mentality.  I am a big proponent of freedom and am typically skeptical of increased government regulation.  Having said that, we as a society have determined that the unbridled sale of harmful items is not OK.  A hundred years ago, stores routinely sold Laudanum (opium) to anyone who wanted it, and the bottles included dosing information for children as young as 3 months old.  Now that is illegal, just as it is illegal to sell cigarettes to 8 year olds and whiskey to 12 year olds.  When a business owner engages in selling an addicitive carcinogen, they should expect increased scrutiny and regulation.  

OK, enough of the soap box.  Please look over the information in the link, and consider sending in a comment.  It is easy and can be done online.  Believe me, in this matter your voice counts!

Tim--MR

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Lori Stoen's picture
Replies 7
Last reply 8/4/2013 - 9:43pm
Replies by: Lori Stoen, ecc26, Gene_S

Wondering if anyone is in the trial GM-CSF / Yervoy ?? My dad was givin this as an option or to use the regulated dose of Yervoy... Wondering how the side effects are... Or  just anyone with the Yervoy side effects would be helpful.. We are so undecided ... Dad feels good now and is active doing many things at the age of 80 and he does not want to give in..... And I am in total agreeance with him. I just dont want to see him sick and I dont know if that triple the dose of the trial would be to much... Any suggestions from ppl that have been on either ?

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Lori Stoen's picture
Replies 4
Last reply 8/1/2013 - 9:21am
Replies by: DEK, Lori Stoen

Wondering if anyone is in the trial GM-CSF / Yervoy ?? My dad was givin this as an option or to use the regulated dose of Yervoy... Wondering how the side effects are... Or  just anyone with the Yervoy side effects would be helpful.. We are so undecided ... Dad feels good now and is active doing many things at the age of 80 and he does not want to give in..... And I am in total agreeance with him. I just dont want to see him sick and I dont know if that triple the dose of the trial would be to much... Any suggestions from ppl that have been on either ?

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buffcody's picture
Replies 2
Last reply 8/1/2013 - 2:12am
Replies by: JerryfromFauq, POW

Just wanted to share on a separate dedicated post the fact that a full genetic sequencing of my most recent tumor showed BRAF as positive.  First two testings, one in July 2012, the other a few months later, indicated BRAF wild type.  In fact, the second one was done precisely for the purpose of seeing if the first one might have been incorrrect.  My oncologist said that the BRAF showed up in an unlikely place on the tumor (genes?).  He also indicated that there were other peculiar findings.  The analysis is probably a very accurate one as it has been done by one of the leading genetic sequencing labs in the world at the University of Michigan.  I'm looking forward to finding out more.   I hope soon.  This is one crazy disease.  But sometimes there is good news to report.  Like being eligible for treatments that I thought myself ineligible for.

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mclaus23's picture
Replies 2
Last reply 7/30/2013 - 3:41pm
Replies by: mclaus23, NYKaren

My dad just started Z yesterday morning and had had vomiting and diarrhea. Has anyone experienced this so soon with Z or at all?

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DonnaK's picture
Replies 5
Last reply 7/29/2013 - 11:23pm

HI All-  My husband, John, has Stage IV melanoma with mets in his lungs, lymph nodes and brain.  He was on Zelboraf for 7wks but had to stop due to significant liver toxicity.  While waiting for his liver to recover (~2wks), his brain mets re-grew (they had shrunk considerably after just 3wks) to as big or bigger than the original size.  As a result, we chose to start WBR immediately and are hoping to add in Ipi at the end of this week.  (Sadly, SRS is not an option right now as the number of mets are "too many to count", although they are reasonably small.) Has anyone else been through this combination?  If so, at what point did you add Ipi and how did you control the swelling?  John is on 5mg of prednisone as he has minimal swelling, but woke up this morning with a terrible headache.  The radiologist wants him to increase his steroids to control swelling but the oncologist wants him to taper off the steroids to maximize the ipi effect.  For today, he settled for oxycodone which seemed to control the pain, but I suspect the swelling will only continue, particularly if the treatment works.  I'm trying to avoid increasing the steroid level because we will have to delay the Ipi another week, but I also can't stand seeing him in such pain. Any advice??

Also, if anyone has some positive stories with WBR and/or ipi on brain mets, I could really use a happy story to alleviate this nightmare we are living.  

Thanks!!

Donna

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BrianP's picture
Replies 8
Last reply 7/29/2013 - 11:14pm
Replies by: Anonymous, BrianP, POW

Anyone ever heard of or tried this product.  I just saw a physician that highly recommended it.  The Product info is here:

http://www.theharmonycompany.com/product/AveULTRA-Avemar-Fermented-Wheat-Germ-Extract 

 

More interesting, the supporting data/clinical study info is posted here.  The first paragraph talks about study results in patients with melanoma.  The results are overwhelmingly positive.

http://www.avemarresearch.com/TOC.html 

 

You know what they say about stuff on the internet, it has to be true, right? (that's sarcasm by the way).  It does sound legit though and they claim the inventor is a nobel science awardee.  The stuff is about $150 a month so it's not cheap.  It just seems like the claims are too good to be true without having more widespread knowledge of the product.  I did a search on here and it was only mentioned twice and neither of those mentions was by anyone that had tried the product or were endorsing it.  Just curious if anyone has any comments.

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Everymoment's picture
Replies 10
Last reply 7/31/2013 - 10:46am

Hi,

So I met with my local oncologist and she scheduled the PET scan for this Wednesday. She wasn't too concerned that I just became anemic within the last 30 days which I see as a huge red flag just in general. The fact that I've never been anemic and now all of a sudden I'm anemic with all these other issues. Anyway, only 1 more day of waiting to get scanned and then a couple more days of waiting for results. Send some happy thoughts please!

Isabell

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DeniseK's picture
Replies 4
Last reply 7/30/2013 - 6:22pm
Replies by: DeniseK, POW, ecc26

Hello Everyone,

I'm hoping someone can help me.  I just had my second infusion of Ipi on Thursday July 25th.  Saturday I woke up with the worst pain in my arm just around the sub q on my forearm.  It feels like someone is stabbing me in my arm.  My chest also feels heavy and more back and chest pain than normal.  The sub q on my arm appears to be getting larger as well.  I looked and looked and I could have sworn that this might be normal and a sign that it's working??  I don't know what to do?  Should I call my doctor? I don't think I have much room for growth with my mets and it's scaring the (bleep) out of me.

Thanks for your help

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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BrianP's picture
Replies 9
Last reply 1/6/2014 - 9:39pm

I traveled down to Moffitt this past week to enter a MAGE vaccine trial for Stage IV NED patients.  Unfortunately due to some delays with pathology request the scans I had several weeks ago which indicated no disease are now not recent enough for the trial so I had to get rescanned.  The new scans showed evidence of disease so I had to come up with a new game plan.  I'm now looking to travel back down to Moffitt this upcoming week to enter the BMS Nivo/IPI combo trial.  There's been a lot of press on this new combo but surprisingly I haven't heard of many people on this forum enrolled in the trial.  Would love to hear from someone on the trial if they could share their experinences so far.  Thanks!

Brian

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