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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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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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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Lisa - Aust's picture
Replies 15
Last reply 12/2/2013 - 3:44pm

Hi Guys,

Not sure if this has already been posted, but check it out and sign the petition if you like.

http://www.savelockysdad.com/

Cheers,

Lisa

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Well my 23 month run with "Z" is over as of 8/13/13. With the issue of brain mets developing "Z" is no longer the magic bullet.Now after a 2 week dry period  i am on "T"  (Tafinlar).This Tuesday scheduled for gamma knife surgery for brain mets.Keeping my PMA high that this new plan will be more effective than plan B. Little anxious of the procedure but have read posts from those who have SRS.A little scary but very doable.Need your prayers/Beat the Beast.      Al

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SteveDB's picture
Replies 6
Last reply 9/14/2013 - 7:13pm

Hi all.

It's been a year or so since I was last here. I typically come in once a year or so to say-- Hi! I'm still alive, blah, blah, blah (whatever updates may pertain).

 

I have 7 more months, and I will reach the 10 year mark from my last of 6 surgeries, from 1997-2004.

I've found myself feeling it, deeper than I had before, and realized-- I need to learn how to live again.

Cancer doctors teach and prepare us to die, but they really have no idea-- at least a few years ago-- as to how to show us how to live again, or how to live beyond cancer.

So, for whatever reason, this evening, I googled-- living beyond cancer. It appears that much forward motion has taken place in this avenue. Which is a good thing.

 

So, Hi all! I'm still alive. I don't really know what that means, but I do it one heartbeat, one breath, one minute, one hour, one day, one week, one month, one year...... at a time. I pray each day, read my bible a little bit each day, and God shows up.... sometimes profoundly, sometimes very gently, and simply, so much so that at times, I miss it.

 

Ever watched the movie-- It's a Wonderful Life?

Remember the scene where Bailey made it back to the bridge, after his journey through Pottersville? Remember his prayer?

 

God, I want to live again. Please, let me live again.

Work through it. Come back to life.

One heartbeat at a time.

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bonusfries's picture
Replies 4
Last reply 9/5/2013 - 10:32pm
Replies by: blden2186, Anonymous, aldakota22

My particulars are: 39 yr old, an 11 mm ulcerated primary with 5 mitosis rate. My WLE and SLB were both clean, as was my PET/CT. So when I was asked by my Onc whether to watch & wait, or undergo preventive treatment, of course I replied with "both".

 

I'm starting Peg alfa-2b tomorrow, and I'm excited. I know the numbers on its long term effectiveness don't really warrant such enthusiasm, but at least I get to do something proactive about this.. instead of just waiting and worrying and trying to live a normal life. It also helps that my employer gives us incredible flexibility when it comes to health issues like this, so if they are out there listening, I really appreciate it :P

 

I didn't see that many threads here about Peg experiences, so I will keep updating this as I progress through this year. Hopefully this is just one of many good news stories we'll read here over the next year.

 

Cheers!

Jeff

Just do it

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Aimileah's picture
Replies 10
Last reply 11/12/2013 - 1:16pm

Hi I'm new to this site so not sure if this is the right place to voice my concerns but I hope you can help. I'm a 28yr old female and for the last year at least I have had a small flat brown mole on the sole of my foot. However recently I have noticed it has grown slightly and has a small white area in the middle of it. Should I be worried? I mentioned it to a nurse practioner a few weeks ago and she just said keep an eye on it? I should also mention my grandad had skin cancer at a young age and that I'm a very fair redhead! Any advice would be great thanks.

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NYKaren's picture
Replies 8
Last reply 8/31/2013 - 5:09pm

Hi everyone,
I just came back from the onc and all is good. I am having a pretty remarkable response to the Trafilnar, my ear, all my scalp mets, etc. are clearing up nicely. My blood work is good.
The brain mets are having the pretty standard effect, anger, etc. and I really didn't have a clue about where I was (my husband was driving) until he drove right up to the door. I know the office is going to be looking into some kind of neuro-psychologist who might help me navigate things better. My work won't clear me for at least 2 more weeks, but I know that's a good thing.
Karen

Don't Stop Believing

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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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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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Roxy1453's picture
Replies 1
Last reply 8/28/2013 - 10:54am
Replies by: POW

I decided to have the needle biopsy on my lung. Had it done yesterday, now I sit a wait to find out if it is Mel. Hope to hear by the end of the week, if I get really lucky! The waiting is the hardest part!

ThanKs for all of your responses!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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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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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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JerryfromFauq's picture
Replies 2
Last reply 8/27/2013 - 10:55pm
Replies by: JerryfromFauq, Anonymous

I believe that inflammation is a part of metastasis and tumor growth. I also believe that diet can have an effect on inflammation. I do not believe in ignoring Western medicine to go wholly into other Holistic lines of attack. I strongly suspect that an overlap between the two is best for us.   Dr Andrew Weil (founder, professor, and director of the Arizona Center for Integrative Medicine at University of Arizona ) is again presenting his Anti Inflammatory Diet on the Dr Oz show on Aug 28th. My Oncology surgeon recommends listening to Dr WeiDr Weil believes alternative medicine should be used in conjunction with, rather than instead of, mainstream allopathic methods.   Here is Dr Weil's site. www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

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

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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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