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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Hello all,

I am Casie, a 2.5 year melanoma stage 3 survivor. I was diagnosed a week after graduating from college. I went through a wide excision, lymph node removal in my right groin and the interferon treatments. Since then, I have come up with a way to give back to people currently going through what I went through.

I have a website, www.wear-awareness.com and I sell stylish, comfortable melanoma awareness and other cancer awareness t-shirts. The awesome part is that $8 of each shirt goes back to cancer fighters in the form of care packages. 

Please check out www.wear-awareness.com for great cancer awareness t-shirts AND nominate someone to receive a care package full of gift cards and other goodies!

Thanks,

Casie 

Owner of www.wear-awareness.com

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/17/2014 - 12:12am
Replies by: Anonymous

As I was watching the U.S. Open golf tournament yesterday and Martin Kaymer was running away with it, they mentioned the recent passing of his mother “due to complications from skin cancer.”  She died from melanoma, and I just wonder why they use the terminology “complications from skin cancer” on the national broadcast, instead of saying “melanoma.”  It seems like an opportunity to educate the viewing public.  I don’t know, maybe I’m reading too much into it or being too picky.  When well-known people die of cancer, the media usually says “colon cancer” or ““stomach cancer”. . not “complications from metabolic cancer.”

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Gene_S's picture
Replies 1
Last reply 6/16/2014 - 8:37pm
Replies by: DZnDef

“The Quest for The Cures” 24 hour replay marathon
has started.

If you missed any of the shows before or simply want
to watch them again, today's the day.

Here’s all 7 episode links for you to enjoy :-)

http://www.thetruthaboutcancer.com/episode1/

http://www.thetruthaboutcancer.com/episode2/

http://www.thetruthaboutcancer.com/episode3/

http://www.thetruthaboutcancer.com/episode4/

http://www.thetruthaboutcancer.com/episode5/

http://www.thetruthaboutcancer.com/episode6/

http://www.thetruthaboutcancer.com/episode7/

Keep in mind that you can click on any of the videos to
pause or play if you need to take a break and you can
double click on the video to open to full screen and have
full player controls.

Enjoy,
Ty

PS. Want to join the movement and support our mission?

You can do so by pre-ordering the silver or gold package
below - plus you’ll save over 50% off for being an early-bird
supporter if you pre-order before June 15th. (Less than
24 hours left)

Here’s the details:

Silver Package

If you loved the series and want to watch it again and again
and share with your family and friends, consider supporting
our mission and pre-ordering the entire docu-series with
transcripts and audio MP3's as well as the original videos.

Learn more here about the silver package here

Gold Package

Be a hero and own the entire Gold package and receive all
27 uncut videos, audios, and transcripts, PLUS everything
included in the silver package

Learn more about the Gold package here

Thanks in advance for your consideration and support :-)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Hello MPIP Community Members,

The MRF has been invited to serve on an Advisory Board in Atlanta, GA on Wednesday, June 25th. We would love for a caregiver to join us. The attendees will be diverse (advocates, patients, caregivers and nurses), and we will be focusing on areas of unmet need for melanoma and lung cancer patients. With this Advisory Board, the pharmaceutical company we've been invited by will be working to:

  • Refine their understanding of the education and communication needs within the patient and caregiver community
  • Ensure that their patient experience program as well as accompanying educational materials are best-in-class
  • Tailor nursing educational materials and a peer-to-peer nursing speakers program to addresses the unique user needs of the community-based practice

If possible, we're looking for a caregiver who:

  • Is currently a primary caregiver for an individual diagnosed with metastatic melanoma
  • Assists an individual with all of the following tasks at least 2/3rds of the time:

o    Obtaining, refilling, or administering medications

o    Providing transportation to/from physician appointments or other healthcare appointments

o    Speaking with doctors and/or other healthcare professionals on behalf of a or melanoma patient

o    Evaluating cancer treatment options for a melanoma patient

  • Is currently receiving or has received help for their patient from an advocacy organziation or pharmaceutical company with education, emotional counseling or finacances

If this sounds interesting to you and you are available to travel to Atlanta on June 24th for an all-day meeting on June 25th, please contact me directly at smoneer@melanoma.org or at the MRF office at 800-673-1290. An honorarium, as well as all travel and meal expenses, will be paid. 

Thank you for your consideration and I apologize for the last minute request. 

Sincerely,

Shelby - MRF

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Socks's picture
Replies 3
Last reply 6/16/2014 - 12:36pm
Replies by: Socks, arthurjedi007, RJoeyB

Any good recommendations for where to find the UV index for the day? The weather app on my phone (Living Earth) said 11 at the same time that AccuWeather.com said 5 and Weather.com said 9. I try to stay indoors between 10 AM and 4 PM anyway and I have SPF 50 Broad Spectrum sunscreen, face lotion, and lip balm as well as a UPF 50+ wide-brimmed hat but when the UV Index hits 11 or higher, I generally just stay inside, period, to stay on the safe side.

So where do y'all get your UV index info from? Or am I worrying about it for nothing?

"Be who you are and be that well." - Saint Frances de Sales

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NYKaren's picture
Replies 9
Last reply 6/16/2014 - 12:36pm
Replies by: NYKaren, kylez, ecc26, Bubbles

Hi, after just failing the BRAF combo drug, it will be onto PD1. (1 tumor on MRI was 11 found on gamma knife, some on already existing or new tumors). 

I know you have to be brain met free or stable for a certain amount of time; is it always 4 weeks as I've heard from NYU)?

anyone know about Sloan?

i'm finally getting what I've wished for, PD1, after failing all the standards (although the BRAF combo lasted me the longest --8 months--I'm terrified now. 

Anyone who's on PD1w/brain mets, PLEASE let me know how you're doing. 

Thanks

karen

Don't Stop Believing

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Hello folks. It's (thankfully) been a while since Ive been on here, but as of late, I hadn't had a need to worry. But...in the last few weeks, I've noticed some obvious regrowth at one end of my scar, it's a very raised, blueish nodule... Also, the lymph node right under my ear has almost doubled in size just over the weekend. (ear being primary site) Please read my profile for more primary info.

My lesion began as "severe atypia", but with a 'differentail diagnosis' of Level 2 stage 1A.... HOWEVER...

I did not get a thickness until AFTER the initial biopsy, AND the full excision. So when I finally got a thickness from the path report after the 3rd report, of .8mm, it has already been chopped up twice.

Possible it could have started as a greater thickness? Possible surgical-enduced spread?

They did not deem SLNB necessary at the time, but now I wish they had.

What else could this be? Should I be worried?

 

I am seeing my primary family doc tonight.

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Anonymous's picture
Replies 12
Last reply 6/16/2014 - 9:38am
Replies by: pathdoc, Anonymous, jnaakins, natasha, shellebrownies, Janner

I have now read 4 stories lately about in situ that has spread to organs and I'm feeling very afraid.  What I thought was not a big deal has suddenly become a very big deal and I feel my mortality is threatened.  My Doctor has even said, this WILL NOT kill you.  Now I wonder if she is competent.  Is there certain pathological traits that will make some melanoma in situ more likely to spread?  For those that did have cancer go elsewhere after being told it was incapable of spread, what were the traits on your path report and did you get a second look?  Did you have regression or was there a possible part of your lesion that was deeper?  Was it read by a dermatopathologist?  Thank you for the information.

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Anonymous's picture
Anonymous
Replies 0
MeNDave's picture
Replies 4
Last reply 6/16/2014 - 3:12am

OK folks, quick question.  Will Dave's previous history of optic neuropathy and need for high dose steroids on IL-2 exclude him from the anti-pd1 trials?  He goes to the Hillman Cancer Center on the 12th to see about the MK-3475 trial.  His oncologist (God Bless him), although pushing Dave to do the IPI,  is also calling Memorial Sloan directly for him to see about their IPI/MDX-1106 combo (or any anti-pd1s).  Hopefully we'll hear back from him soon.

I just don't want to wait two weeks for an appointment, only to find out he won't qualify anyways.

As always, thank you....

 

Maria

Don't ever, EVER, give up!

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Vicki88's picture
Replies 6
Last reply 6/16/2014 - 12:16am

My husband was recently diagnosed by a shaved biopsy from a spot on his nose.  He also has a streak under his fingernail that has not been addressed.

Upon the diagnose of melanoma, he was referred to a dermatologist specializing is Moh's surgery who is recommending removal with plastic surgery repair the following day.

My question is that, with no full body exam done by either dermatologist, is the normal proticol?

Also, since we failed to point out the streak under his fingernail, is there possibly more going on and if so, is seeing a specialist with Moh's surgery enough to address a more systemic possiblity?  He did do a physical exam by feeling each of his lymph nodes.  Is this enough?

I read that some melanoma's, if caught early and by their location, were less likely to spread.  Only, I do not know where these types of melanoma's are, nor what types of tests are needed to determine if they have or have not spread.

It is just over an hour to see these doctor's and would be the same amount of time to go on to MD Anderson. 

Should we go on to MD Anderson to have the whole body addressed?

Thank you for answering...Vicki88

 

Vicki88

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/15/2014 - 10:42pm
Replies by: Anonymous, Janner, kathycmc, SABKLYN, Julie in SoCal, Teochasse

I took my little girl to the derm for a rash, and had the doctor look at a small mole on my shoulder.   He told me he is certain it is melanoma.  I had no other spots or crazy moles. I've never had anything before.  He asked me where I want "treatment". I don't even know what treatment consists of.  He initially told me he would call in a week with results. After the biopsy, he said why don't we just schedule an appointment to discuss the results.  I looked at him and said "melanoma like I have cancer?!" He seemed certain after doing the biopsy I did.  

Can they see this just from the biopsy?  

 

I was in year at this point, and looked at the nurse.  I said "I can't believe this just happened, I'm getting married in a month". I said this thinking I can't be diagnosed with cancer now, I've got a lot of fun and exciting things to plan for. Dress fittings, and picking out the cowboy boots for the flower girls.  Her respond was "oh you are worried about the stitches and incision?"- I looked at her with my jaw dropped, and said "I don't know what you mean"- she said oh and said I'll ask the doctor if surgery can wait until after the wedding. She came back in and said "the doctor said we will discuss that next week".  

The things they said give me no hope it's "nothing". My fiancée and I are getting married in a month and have 5 little ones between us. This can't be my "story"?! God has blessed us beyond words, and I feel like next week I'm going to hear it's all about to be taken away.  

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amuah29's picture
Replies 3
Last reply 6/14/2014 - 11:42pm

Does anyone have any information on the joint pain side effects from the Yervoy trials? Thank you.

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kathy38's picture
Replies 6
Last reply 6/14/2014 - 10:57am

Hello, I was diagnosed on Friday, May 30th. The depth of my lesion was 4.2mm. I had a wide excision on my scalp and a sentinal lymph node biopsy done on Tues June 3rd followed by a PET scan on thur. The lymph node and PET both came back negative. Which is awsome! I am stage 2, and very confused and overwhelmed. I feel like I am a ticking time bomb, just waiting for it to show up somewhere else. Before I found the melanoma my husband and I were planning on moving to the south, Alabama/Georgia area. We live in WI now. I am hesitant to leave now, he thinks I am "cured" and we shouldn't change our plans for "what if" I also heard that health care isn't very good in the south, is there any truth to this?? I'm looking for advise on how to proceed with our future.

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5dives's picture
Replies 12
Last reply 6/13/2014 - 11:45pm
Replies by: 5dives, Anonymous, RJoeyB, JoshF, Janner, Tim--MRF, mary1233

Hello all, 

I am writing with what may seem a very basic question. I recently received "the call" from my derm that I have a superficial spreading melanoma, .96 mm, Clark's level 4, mitosis rate 2, brisk TIL. At first glance, I see that this will probably be 1b, right? 

Derm says .96 is close enough to 1 mm to warrant the SNB, and he referred me to the cancer center at Loyola Medical Center. Surgeon = Godellas, doctor = Joseph Clark. 

I see that Dr. Clark is heading several clinical trials, and my derm said he "lives and breathes" melanoma. He said that if he had a loved one with melanoma, he'd send them to Dr. Clark.

My question: I see this term "major cancer center" thrown around on this board, and I have to admit...I don't know what it means. I know many feel melanoma is too serious to be treated anywhere but at a major center, and I live in Chicago, so there's probably a "better" choice here...but I wouldn't even begin to know where the nearest "major cancer center" to me is.

My cousin died of melanoma, and I'm 45 with three boys...I do NOT plan to mess around with this disease. Bull by the horns, and all that.

Any thoughts appreciated.

Best, 

Elaine

http://melanomadame.blogspot.com/

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