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.

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The National Cancer Institute at the NIH just told me my wife is ineligible for any trial there. Ever. Their reason was not that there was evidence of active brain mets, or that we had to wait three months from the last brain met treatment. It was that my wife's brain tumors bled (requiring the craniotomy and Cyberknife) and she suffered a seizure as a result of the brain irritation from the Cyberknife. "The seizures make her ineligible".

I think we all know how terrible it is to have this disease and it's metastatic. It's worse if you have brain mets because you are excluded from any clinical trials that I can find, unless you are BRAF positive (which my wife is not). So the hope is that your brain is at least free of disease for long enough after a particular brain met treatment that you can slide into a clinical trial - like the adaptive cell therapy and andeslukin combo. 

If anyone knows of any clinical trial that does not have brain met exclusions or this new "no seizure clause" I'd love to know about it. 

And for anyone getting Cyberknife or any other form of brain radiation, be sure to get on sufficient anti-seizure meds (not just steroids) prior to and well after the treatment. Because then at least if you are clear for a period of time you at least have a shot at an NCI clinical trial.

We are of course devastated by this news.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Janner's picture
Replies 2
Last reply 6/28/2011 - 8:30pm
Replies by: LynnLuc

Not sure how much I like this or not as I doubt two of my melanomas would have been of concern - but it is worth being a conversation piece at least.  If it makes even one person more aware and sends them to a derm, it's probably worth it!

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StevenK's picture
Replies 26
Last reply 6/10/2012 - 2:45am

My oncologist told me I have a decision to make. My depth is .6mm, but it is Clarks Level IV. It was excised with clear margins all around, but he says there is a 2% chance it has spread to my lymph nodes. A Sentinel Node Biopsy is the only way to know that for sure. It seems like a pretty large procedure to do when there is a 98% chance that it wont be of any benefit. I hate to admit that the size of the scar that it will leave me on my face and neck is a factor for me. To be honest, if it was anywhere else besides my face, I wouldn't have such a dilemna.

My oncologist told me that he himself would not get the procedure done if he was in my shoes. He said that 98% is pretty good odds. He did offer me as an intermediary procedure an ultasound, but he said that's not nearly as reliable as an SNB. I know that I'm lucky to be dealing with the kind of odds that I am. I'm deeply thankful for that. I'm leaning towards the ultrasound and so is my sister, who has been wonderfully supportive. May I ask... if you were were in my situation before, what did you do and why?   

Much thanks, Steve

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TracyLee's picture
Replies 12
Last reply 6/30/2011 - 12:47am

Hi Y'all,

About 1.5 weeks since my second ipi transfusion.

I'm suddenly seeing painful, swollen nodes on the "good" side.

Anyone else experienced anything similar? I have been trying to cheerlead myself that it is just ipi doing it's slash/kill of cancer cells, but I'm a bit down right this minute.


Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Replies by: LynnLuc, Anonymous

Please if you get a chance, listen to the full interview of Dr. John Kirkwood on the lastest therapies for Melanoma. It might help save your life or loveone's life.

Get a cup of coffee and a pad and pencil.


Jimmy B

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Carol Taylor's picture
Replies 6
Last reply 6/29/2011 - 6:01pm

This amazing couple has made another, at Eric's insistence. Jill has her hands full so I hope she doesn't mind if I post this for her here. I know these are meant to be shared and are on youtube.

Grace and peace,


Life's short. Eat dessert first. (This blog post contains links to my story).

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MRFUser2011's picture
Replies 3
Last reply 6/28/2011 - 9:03pm

I read, with some concern, the posts by others regarding Dr. O'Day perhaps not being at the Angeles Clinic anymore.  I called today and spoke to someone there and was informed that Dr. O'Day is definitely still at the AC, is on an "indefinite leave of absence" and is expected to be back by late July at the latest.  I was assured that he is not leaving AC and that the other doctors are only taking over his appointments while he is out on leave.  His assistant, Maggie, is also on leave until next week.  Maybe they just needed a break!

Blessings, Shari

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DeniseK's picture
Replies 7
Last reply 6/29/2011 - 4:27pm

Hi All,

Question about Interferon....The first month of high it in the hospital or do you go to the hospital everyday?

Do they give you a port immediately or just for the at home 11 months?  Do you have to have a port? 

Still deciding if this is the right treatment for me and if I'm going to be hospitalized for a month I'm not sure I can do that.

I still have more tests to do, PET Scan, Brain MRI, and LDH Levels tested.  Still haven't seen an oncologist but that's all happening this week and next so Interferon may not even be needed or a good treatment. 

Anyone having headaches from just stress or anxiety?  This is not cool!!  Of course my mind is messing with me and I'm thinking crazy brain tumors have invaded my head!!  I just want the tests ASAP to put my mind at ease!!  I saw someone got xanax for anxiety!  That sounds really good about now!  As well as some strong pain killers!! 

Thanks for all your help!


Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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ShariC's picture
Replies 11
Last reply 6/28/2011 - 3:23pm

Hi All - Word from the Doc today via a PET scan after my latest chemo is that it isn't effective enough slowing down this mel.  No more treatment is recommended.  I don't have time to wait for Yervoy.  The chemo was very hard on me and I didn't want to do it again anyway.   I've got a 9 year old, and plenty of family and friends around me.  I'm more peaceful than I thought I would be. Of course, my concern is for painfree. 

Thats it...for now.  I'll try to keep you all up to date.  I intend to manage this tumor load as long as possible and have some quality time left for journaling and perhaps a scrapbook.  Life is good...truly is.  Just sucks and is unfair sometimes.  - Shari

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JSJ80's picture
Replies 6
Last reply 6/28/2011 - 2:26pm
Replies by: JSJ80, Carol Taylor, Pat from Ohio, Anonymous, Sherron

I'll be leaving July 25 for an 8000 mile Harley ride to raise money with M4M.  Route is LA to Seattle, route 90 all the way to Martha's Vineyard (ok Woods Hole ferry actually), then down to Charleston, SC and back along the Gulf through TX.  Staying with lot's of friends along the way but . . . don't know a soul in Seattle (!).  Or between Atlanta and Dallas (!).

James Jones

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jimjoeb's picture
Replies 2
Last reply 6/27/2011 - 9:16pm
Replies by: Carol Taylor, awg

Hurray and thanks to God!

Now on to the oncologist to see what are the options and recommendations for me as a IIIa.

Be Not Afraid-God is with you always Stage IIIa

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JACKS WIFE's picture
Replies 8
Last reply 6/28/2011 - 4:01pm

My Sweet Husband was diagnosed with MM --regressed scalp and appeared in left neckLymph nodes.  This all happened in May of 2006.  He has had neck resection, high dose radiation and 5 months of interferon.  His liver would no longer tolerate these meds, so he was removed from that treatment in April of 2007.    All scans and dermitologist biopsies have been clear. 

Last week he had a CT scan....fairly routine.....and it has been returned with lymphadenopathy in the supraclavlcular, subpleural nodularity in both lung bases, enlarged left thyroid lobe and multiple enlarged nodes on the right side neck.

Scheduled for a PET/CT this week.    As you can expect, I am very concerned and have been told that the "supraclavicular" is a very unwanted area of recurrence.  Can anyone tell me if that is true and Why?



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Rendergirl's picture
Replies 13
Last reply 7/2/2011 - 10:53pm

I have pre-op tomorrow and Tuesday I have my surgery. I'm having a tumo removed from inside my leg in back of the knee. They are going to use a nerve block, injecting me in the lower back, which I'm really scared about. I'd rather be put to sleep. They have to make sure the Melanoma hasn't spread which is why they're removing the tumor. I'm really nervous about the surgery and the pathology. I could use any good wishes and thoughts right now.... thanks.



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Hi Kevin

I was just wondering how your treatment is going on, hopefully still well? :-)

In case you´re not satisfied with the effect of your therapy, have you considered Ipilimumab?

It seems that my wife is a complete responder, thanks to Ipilimumab (and her positive mind).

I wish you the very best fellow warrior.


kind regards



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Shelly in Switzerland's picture
Replies 2
Last reply 6/27/2011 - 9:54am

I am wondering about side effects of the STR. I have been wheelchair bound ever since the
WBR the middle of of March.
I begin the linac treatment (STR) this week, 5-10 doses. My left foot does not cooperate at ALL!

I want to fly to Seattle. Anybody out there who has regained use of their limbs?

Basically I am wanting to know length of recovery time after STR.
Am I crazy?

There is no will but God's will. Today I seek his peace.

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