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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jrtufo's picture
Replies 7
Last reply 10/9/2017 - 2:34pm

For those of you on now or previously on (thank you trial folks!) the MEK TAF combo:  How long were the side effects with joint pain and inflamation with you?  Just started this combo and have already had to reduce the dosage due to skin reaction-now a week later I've got the joint and muscle pain...Trying to catch a break here!

JTufo

JulieT

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jetdoctor67's picture
Replies 7
Last reply 10/12/2017 - 5:54am

Hello,

Well my story is I was recently diagnosed with nodular melanoma (on my ear). My dermatologist removed most of the tumor with a shave biopsy on my left ear and was told the tumor was .04mm in size and .65mm deep undetermined (meaning the biopsy did not get the root of the melanoma so not sure how deep it is) and my clark stage is 1B.
My dermatologist referred me to the University of Chicago to have a melanoma specialist provide additional treatment (I'm told any tumor above the shoulders you have to see a plastic surgeon). Well the initial appointment was Sept 26th with the surgeon and he wants to remove the rest of the tumor and do a SLNB. My surgery is scheduled for October 25th.
He told me not to worry, but I feel like he tells everyone that. My wife also tells me not to worry but to be honest I'm shaking in my boots . A month ago I knew very little about melanoma and after much research and reading message boards this disease or "Beast" as it is referred to is nothing to take lightly.

If anyone is willing to share their story...I'd much appreciate it!!!

Thank you,

Terry

 

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Anonymous's picture
Anonymous
Replies 0

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Anonymous
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Anonymous's picture
Anonymous
Replies 5
Last reply 10/2/2017 - 10:44pm
Replies by: Anonymous, stanjuza

So it appears that change seems to be the biggest factor when it comes to detecting melanoma. My question... is there a point at which melanoma STOPS changing? For example let's say you aquired a new mole 5-10 years ago and it has never changed. It popped up one day and stayed the same. Could that be melanoma? Or would it just continuously keep changing??

thanks! 

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/30/2017 - 7:37am
Replies by: Jamie1960

I am a 60 yr old M. For the past yr I have developed a number of new moles, ranging in size, color, height above skin, and two in particular get itchy.
Should I be concerned

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/2/2017 - 6:55pm
Replies by: Anonymous, cpauli

Has anyone heard of a pin head size melanoma? I have a jet black mole which can't be bigger than a pen mark.. it is dark blue black and has been there a good 4 years, hasn't grown in size. I have had a few  one precancerous and a few atypical moles removed in the past, but they have been big brown ugly moles or weird. This one seems ok, just real dark and not totally flush. 

I read a few articles that say melanoma can be found in very small diameter moles, but are always early stage.. 

 

 

 

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AZSoCal's picture
Replies 4
Last reply 10/5/2017 - 3:40pm
Replies by: AZSoCal, ilikepralinen

Hi All,

I'm currently in week ~6 of a blind study getting either Nivo, Nivo + Ipi, or just Ipi.

My Creatine Kinase levels have started to increase significantly. I feel fine, but the doctors don't want me working out or doing too much strenuous activities.

I had to skip treatments last week when my levels approached 2000, but they were back down to the normal range 4-5 days later. I got another dose yesterday, and it shot back up over 400 a day later. There's a chance they'll need to take me off the meds entirely if it continues.

I'm trying to control it through my diet -- eating anti-inflametory foods, staying away from sugars / carbs, avoiding alchol, etc. 

Wanted to check to see...

...if anyone else experienced similar side effects?
...if so, how did it progress (or regress) over time?
...anything unique you found that helps control it (outside of diet)?
...and how common this is (as I didn't see CK levels mentioned very often in other posts)?

Thanks all!
Aaron

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/3/2017 - 9:39pm
Replies by: Anonymous

Had a deep nodular melanoma on arm about a year ago - 2c following WLE and SNB. On the watch and wait protocol, having been offered and declined interferon. Reading here was invaluable getting through and adjusting to diagnosis. Thanks to all of you.

My first colonoscopy this year was all fine except for a "nodule below dentate line" firm and ulcerated, not a hemorrhoid, maybe a skin tag but Mel is tricky so doc referred me to another specialist for anoscopy since it was "outside her area".  I procrastinated until my primary doc saw order and insisted I make appt. 

Anyone had a biopsy from this area ? Having a little anxiety. Ugh. 

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stevenallenschwartz's picture
Replies 7
Last reply 9/29/2017 - 11:50pm

I just received my results from my Petscan. No cancer as of today. This has been a long journey with heartbreaks and anxiety. This forum has been so good to me during my moments of doubt! I want to share my gratitude to all and my thanks to Keytruda for getting me clean. 

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jc2dad's picture
Replies 4
Last reply 10/4/2017 - 5:42am

I spent several hours last night on the memorial pages, paying particular attention to those memorials that had a link and maybe a photo.  Many of the stories were so inspiring.  What I noticed as I was scanning through the pages, is a significant decrease in memorials post approximately 2011-2012 range.  There were many, from the past 5 years, but not nearly as prolific as prior to the introduction of all the new treatment options.  For me, it gave me a ton of hope, and thought I would share this positive observation.  Keep fighting and believing in Faith!

Jonathon

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/29/2017 - 7:56am
Replies by: Jamie1960

Hi I'd appreciate any input. I have a few moles/ or freckles and are kinda weird and have an irregular border. which I know means I should get them checked out, but the thing is that the two doctors I have brought them up to say I have nothing to worry about because I'm only 18 and then they don't give me a referral to see a dermatologist. One is on my shoulder, the other one is on my breast. Are these abnormal or am I worrying for nothing? 

 

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Kyrarosee_'s picture
Replies 1
Last reply 9/29/2017 - 12:05am
Replies by: Anonymous

I had a mole sent for a biopsy 2 weeks ago today. MY dermatologist told me it would take 2-3 weeks to come in and she’d call me with the results either way. I’m tired of waiting and not living my life because I am in constant fear. She found 5 moles she doesn’t like and said whatever the result of this one is, is the result of them all so knowing I could have 5 moles that are MM scare me so bad and I just want to know already. 

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Anonymous's picture
Replies 3
Last reply 9/29/2017 - 12:45am
Replies by: jc2dad, Anonymous

Is it possible, or has anyone ever had one type of melanoma and then develop another?  Trying not too worry too much but have bruise like marks on both big toes. Could also be from blood thinners is am on. 

Thanks for any info. 

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