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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MonicaD's picture
Replies 25
Last reply 8/30/2013 - 2:33pm

Hi there,

After my SNB came back positive, I had surgery to remove the rest of my inguinal/groin nodes last week (Oct 18th).  I'm really worried about the prospect of lymphedema now and would love to hear from other people who have had this surgery and what your experience has been and how you've dealt with it.  I was a very active person before and I plan to be again but worry how lymphedema is going to affect my ability to hike, bike, run, etc.  So far, I still have my drain in and it's removing a lot of fluid, which feels good so I plan on requesting to keep it in as long as they'll let me.  I'm still very much in the early phase of healing so when I'm sitting or lying down, I keep my leg elevated and also try to do some gentle massage on my leg.  Is there anything else I can be doing?  What can I expect later in terms of swelling and ability to be active? 

Thanks for any info you can give me!

Monica :)

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Leaf's picture
Replies 7
Last reply 8/30/2013 - 1:20pm

Hello,

My father has Stage IV Melanoma.  I don't really know a lot of information, nor do I understand a lot of, but I want to help anyway I can.

I'm going to try my best to explain the situation, but like I said, I don't know a lot, so perhaps I will try and keep this more general.

The insurance company denied payment for a PET scan my father had last August because they deemed it to be "not medically neccesary."   He has appealed it and it is currently being "reviewed."  I have been trying to do some research, and believe that PET scan application would clearly be classified as Staging, something that is in fact neccesary.

I feel that this scan was clearly neccesary and the insurance company is just trying to see what they can get away with.  However, more recently, my father has had two more scans to see if it has spread further.  If they deemed the August scan as not neccesary, I'm sure they will try and do the same with the two recent ones.

Obviously, the doctors need to prove the neccesity and write to the companies, but I wanted to know what others have done in situations like this.  

Please share any advice/experience.

Thank you.

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audgator's picture
Replies 10
Last reply 8/30/2013 - 7:43am

I'm not sure if this is the appropriate BB in which to post some sad news. I think my father was active on this website, especially while he was going through his treatments for melanoma. (This is his son, posting via his account.)

My father passed away last weekend from a heart issue unrelated to his melanoma or its treatment. Our family history is one of poor heart health, and my father had a longer life than both his dad & his older brother who died in their 50s. At my father's memorial service on Thursday, his oncologist spoke with my mother about my dad. My mom thanked her effusively for the treatment and making him 90% cancer free. The doctor corrected her, & said my dad beat cancer. His legacy will live on too. She told my mother that the clinical trial in which he was a participant was so successful that it will be submitted for FDA approval next year. His results will be included. Hopefully his legacy can live on in future patients beating melanoma with the drugs developed by Moffitt's researchers!

I want to thank all of you who supported my father through this forum over the last four years. Family support is wonderful in times of need, but sometimes the support of those who've walked in your shoes is even better. Going through his recent posts, I see that he gave as much as he received. I wish you all well in your continued recovery & an NED diagnosis in your future!

Sincerely,

Ben James, son of Daniel H. James

http://www.legacy.com/obituaries/sunsentinel/obituary.aspx?n=Daniel-James&pid=166425070

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JerryfromFauq's picture
Replies 2
Last reply 8/29/2013 - 11:52pm

2013 NIH report NRAS & IL-2

Full article is interesting.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3241890/
"The main conclusion from this multi-center retrospective study patients with metastatic melanoma treated with HD IL-2 is that there was a statistically significant difference in the response rate (CR or PR) based on the tumor mutation status. Patients with NRAS mutations were more than twice as likely to respond to HD IL-2 than patients who were WT for NRAS (47% versus 19%, p=0.04). This is the first time that mutation status has been associated with response to HD IL-2 therapy for melanoma. We also observed a strong trend for a lower chance of response to HD IL2 among patients with elevated serum LDH, which also has not been reported previously."

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

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Ali's picture
Replies 12
Last reply 8/29/2013 - 11:13pm
Replies by: BrianP, aldakota22, G-Samsa, Anonymous, Ali, Phil S, benp

So my 12 week scans after starting antiPD-1 were okay.  Only 9% tumor growth.  Some tumors had shrunk, some had grown.  One subcentimeter met had disappeared.  Unfortunately, much of the growth is in an axillary tumor that is starting to give me trouble (the back of my arm is numb, I get a shooting nerve pain with certain movements, and my inner arm is feeling bruised).  It looks like we will have to take care of it sooner than later, and of course we can't radiate or surgically remove it while I'm on the trial.  I am continuing on the trial till it has to be dealt with (the Dr. says he has seen 2 people have 'late' responses to the drug, which would be a fun group to join).

So.  I am weighing my options.  One of those is a TIL trial.  So far NIH won't take me for any of theirs, as I have a history of 25 brain mets.  Picky people. :)  I actually qualify for one at Moffitt that combines the ACT procedure with a BRAF inhibitor.  I would prefer not to go the BRAF route just yet (I am not anti-BRAF inhibitors, I just feel my immune system has more to give).  I am waiting for a response from Fred Hutchinson and MDAnderson who are recruiting for their TIL trials.  Any where else I should be looking into for that?

I am not entirely sure that I want to do that next, but I'd like to know if it is an option.  I certainly would love to do it some time.  I am just wondering if I tried IPI again, would it produce great results again?  Especially because I have antiPD-1 in my system now?  Hmmm.... 

I wondered if anyone has responded to immune therapies after taking the BRAF inhibitors.  Or have you heard of people responding?  The doctor says yes it happens, but I would love to see some examples.

Thank you for any information/ideas.  Thank you for your good examples of how to gracefully navigate this disease (and beat it altogether!).

Ali

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aldakota22's picture
Replies 15
Last reply 8/29/2013 - 6:15pm

  Does anyone have any info on Kellygirl,  or  Dick_K ? Have not seen  any  posts in quite awhile. Pray and hope all is well. Thanks.  Beat the Beast.   Al

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LynnLuc's picture
Replies 1
Last reply 8/29/2013 - 3:59pm
Replies by: LynnLuc

Wanted:

  • Stage III resected Melanoma patients that  are current using an interferon therapy
  • Stage III resected Melanoma patients that  did use an interferon therapy but have discontinued within the past year
  • Stage III resected Melanoma patients that either chose, or were advised, to have observation of their cancer rather than an interferon.

 

They will pay $100 to each patient for the telephone interview, $75 for the online survey.  Send you e-mail address and info to contact you and I will forward it on.

My e-mail is lynnluckeroth@hotmail.com

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Tim--MRF's picture
Replies 3
Last reply 8/29/2013 - 3:14pm

I am posting to let the MPIP community know that soon you will see a new look to the MRF website.  This revision comes as a result of a number of issues:

  • Web traffic to the MRF site and to MPIP has grown very rapidly over the past couple of years. When we went through a website overhaul four years ago, no one could have imagined the strains this volume would put on the site. (This is a major factor in why it takes so long to post things on MPIP.)
  • When we last revised the site, very few people used a mobile device to access the web.  This is changing rapidly.  Last year about 270,000 people accessed our site by mobile device, and this year we have already passed 450,000 in this category! 
  • Since the last redesign we have launched a program around ocular melanoma, and that community has sharpened our thinking on some web issues.  For example, we need to ensure our site is accessible for people with vision impairment.

Several weeks ago we solicited feedback and suggestions about the site, and a number of you responded.  Thank you for that input; it has been instrumental in how we have engaged in this project.

Our current plan is to go live with the new site on Monday, September 9.  More information will follow, but this is to give each of you early notice that the site may look a bit different in a couple of weeks.  Here are a few key points:

  • We will retain all of the old data from MPIP, including posts, profiles, etc. 
  • All of the current functionality of the site will be retained (except for the slow posting problem that has been driving us all crazy!)

Let me know if you have any questions.  I am excited about the new look and hope you will like it too.

Tim--MRF

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Hi all,

I wanted to inform you of three upcoming educational events - two webinars and one symposium. The first upcoming September webinar topic is melanoma and nutrition.  The second webiniar, scheduled in October, is focused on caring for the caregiver.  The in-person patient symposium is here in DC at Georgetown-Lombardi Cancer Center on Saturday, Sept. 21.  This is our first local symposium and we are hoping to make it an annual event.

More information on each event can be found here!  Please do not hesitate to reach out to me directly (smoneer@melanoma.org) if you have any questions. 

Sincerely,

Shelby - MRF, MRF Education Program Manager

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shansmith110's picture
Replies 6
Last reply 8/29/2013 - 7:47am
Replies by: POW, shansmith110, DeniseK

Hi out there,

Wondering if anyone has had experience with concurrently taking IPI, Debrafenib (or Zelboraf) and an MEK inhibitor?  My father is about to take his final (4th) dose of IPI next week, but he has 5 new brain mets, and doctor is probably recommending starting on Debrafenib and MEK inhibitor.  Doctors are weighing the option of having him take last dose of IPI.  

He is currently in hospital due to pituitary gland damage from the IPI, and extreme pain in his hip (probably from arthritis).  His hormone levels seem to be leveling off as of yesterday, so is fairly a-symptomatic now.

I have read of extreme liver toxicity with IPI / Zelboraf combo, but don't see much other documentation.  

Any advice or experience welcome.  We are very happy with my father's doctors, and are confortable with his recommendations, but interested in as much information as possible.

Thank you very much.

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Mat's picture
Replies 1
Last reply 8/29/2013 - 1:42am
Replies by: Lisa - Aust

Hi Everyone,

I've been on the Taflinar-Mekinist combo for about a month now and have had outstanding results.  One nuisance (minor in the scheme of things)--before I started on the combo, I developed a numbness in part of my lower right jaw and chin.  The sensation is similar to the effect of a shot of novacane at a dentist's office (albeit one that never goes away).  An MRI revealed a lesion in my jaw--likely bumping-up against a nerve.  The combo has not resolved the issue.  Any thoughts?  Is it the case that BRAF inhibitors somehow "don't get to" bone mets?  Thanks in advance for your replies.

Mat

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meldad's picture
Replies 6
Last reply 8/28/2013 - 4:16pm

Hi everyone,

I don't post much but I read everyone's posts almost daily.
I'm just wanting to know how people have gone on ippi? What side effects have you experienced and weather it was a success?
My dad is about to start his first infusion next week.

Any info would be a great help!

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mclaus23's picture
Replies 5
Last reply 8/28/2013 - 4:03pm

I've told my dad numerous times to cover up if he even travels to the grocery store...he didn't listen and has photosensitivity to his face. Has anyone had this and if so how did you treat it? He will now be wearing a hat I gave him and long sleeves. I don't think he realized how harsh it is.

Thanks!
M

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mclaus23's picture
Replies 6
Last reply 8/28/2013 - 4:01pm

Has anyone incurred a new melanoma in the form of a mole on Zelboraf? My dad has a new mole that appears as a melanoma or it could be a wart which I know is common.
He is getting checked on Friday, however, am looking for feedback from the group.

Thanks in advance!!!
M

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