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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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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arthur's picture
Replies 13
Last reply 9/14/2013 - 4:32pm

On July 11th I found out I had melanoma, the tumor was 6.5 mm thick and ulcerated. My oncologist ordered a CT/PET scan, MRI and a chest x-ray (the melanoma was on my right shoulder) all of which came back with no sign of metastatic disease. On August 6th I had my sentinel lymph node biopsy and excision of the local area, the surgeon got clear margins but one of the three lymph nodes removed had micrometastases. My surgery to remove more lymph nodes is tomorrow at the time of me writing this. Last week when I met with my oncologist he staged me at 3B given this information. We talked about treatment options since due to the thickness of the primary melanoma I'm at a high risk of recurrence.

I'm eligible to enter a clinical trial for ipilimumab, but I feel like Interferon would be the better choice for me. I'm 22 years old and in good shape and my oncologist feels I could handle the interferon much better which would allow me to "live" instead of spending the next year turtling up at my parent's house because of the ipilimumab since according to my oncologist it would "be rough". I'm pissed off this happened to me more than anything, I had to drop all my classes this semester and take medical leave from work(due to the surgery literally obliterating my shoulder lol), as I mentioned I'm only 22 and I've never once tanned in my life, just had some sun burn's from when I was younger but don't remember them ever being that bad. I'm looking for feedback from people who have taken either interferon or ipilimumab, anything you have to share would be greatly appreciated. Thanks for reading and feel free to ask my anything.

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/11/2013 - 7:06pm
Replies by: Anonymous

I have not seen any posts in quite awhile? How is she?

Charlie need not respond....

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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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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SBeattie's picture
Replies 14
Last reply 8/31/2013 - 5:24pm

Been reading the board since initial sx. 9/2011...scalp. breslow 2.38; no ulceration, clean nodes...2a...but mitotic rate of 10...ouch...WLE...local recurrence 2/2012...WLE, again clean nodes other side...6 wks radiation..BRAF negative...last Mon. scans (10 months from previous, can't undo that tho) showed spot in apaex, rt. lung...2.2cm by 1.2 cm...schehduled for resection this week...but I need/want systemic therapy...am in excellent health otherwise...is that an oxymoron?! anyway...followed by  oncologist, not melanoma specialist...have asked her to of course, contact a specialist...she's spoken to Dr. g Linnete (?sp) in St. Louis...is he the best specialist there? (I'm close to st. louis)...should I really get to MD Anderson...wish I could get into the ACT trial at NIH, but I assume that involves ALOT of travel...of course so would MD...but can txs be given 'from a distance'? Are there airline specials for travel? and I guess insurance doesn't cover if it's 'out of neetwork'  I understand I at least need ipi ... but would like to get a hold of nivolumab combo!!! Anyway, any input appreciated...you all are SO VERY helpful...and THANK Y OU so very very much...I've asked alot of questions!!!

SB

Sally

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JerryfromFauq's picture
Replies 2
Last reply 8/25/2013 - 3:01pm

Is IL-2 Still Indicated for Melanoma?        

                  :   http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/...

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

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http://www.youtube.com/watch?v=lT8-mVqsyPU

New Medical Approaches to Treating Advanced Melanoma -- Sloan-Kettering

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

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