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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Shelby - MRF's picture
Replies 5
Last reply 3/14/2011 - 10:50pm

The Melanoma Research Foundation has partnered with EmergingMed to offer a free, confidential, personalized service that helps melanoma patients navigate clinical trials.  Online or by phone, customer service representatives will help you quickly search for clinical trials that match your specific diagnosis and treatment history.  Learn more about this new service by following this link:  ..  

It is our hope that this partnership will result in melanoma patients learning more about every possible treatment option available to them.

Shelby Moneer, MRF

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mom3girlsFL's picture
Replies 3
Last reply 3/14/2011 - 9:05pm
Replies by: BethA in VA, mayeast, lhaley

Had CT abdomen/pelvis and chest xray on Tues 3/8 (a week ago)...posted no news is good tired (anxious) of waiting and called thurs aft and left voice mail-didn't want to have to wait through call back.  Got brave and called today (okay, not too brave, called at 5:45) and left another voice mail.

Not to be a pest, only NED since november after groin dissection...what would you make of this???  I'm thinking "no news is good news", but I've also called -they know I'm nervous-and no one has called me back...


Do not fear tomorrow, God is already there.

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My ipi re-induction wasn't effective so I'm onto Avastin and Taxotere. I've read that it's used to treat other forms of cancer...I was wondering if any other melanoma person has tried it or is in a trial at this time? I've read a few studies that seem promising.


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LynnLuc's picture
Replies 1
Last reply 3/14/2011 - 5:49pm
Replies by: lhaley

Since I finished the basic part of my trial on March 2, 2011...I have the MRI of my brain, the CT of  my neck, chest, pelic etc, apheresis and blood work first app't is at 715 AM and my last scan is at 630 PM...what a long day down in Tampa...

I am back to work and looking forward to only having booster infusions of the Anti-PD-1 every 3 months...hoping to remain NED and getting some energy back!

I won't see Dr Weber tomorrow so he will call me with the results on Thursday.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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adgesoph's picture
Replies 13
Last reply 3/14/2011 - 4:34pm
Replies by: LynnLuc, Linda J, Anonymous, adgesoph, NicOz, KatyWI, Carmon in NM


Hi, I've posted here just a couple of times for my dad.  He has stage IV mel. - lung mets, and a couple tumors in his head and neck area.  This past week he has been at Vanderbilt getting ready to start the GSK Braf/Mek combo trial and passed all the screenings until they did a cat scan of his brain and found 2 small brain mets.  So now he's not eligible for this trial-talk about a major let down-we were all so excited he was going to start this medicine.  But Vandy does have the GSK Braf trial for brain mets and they are now trying to get him into this.  Is this the way to go or should he do gamma knife??  The brain mets have thrown a huge curve ball in everything because I thought I was up on my melanoma research but haven't looked into what's best for brain mets.  

My parents are still at Vandy waiting to here if my dad can get into this new trial (they live 12 hours away).  He's had radiation before for tumors in his head/neck area and it didn't work and he lost all of his hair in that area and still has big issues with dry mouth and not tasting things well.  So radiation isn't something my parents want to do again because it was a bunch of pain and trouble for nothing.  Is Gamma knife the same??  Any thoughts on this braf trial for brain mets?  I know it's new and has had some success but with only a small number of patients.  Also, anyone else have experience at Vandy?  So far my parents love it (doctors, staff just impressed in general), just wish they could start a trial.  

Thanks for any input you can give me.  I feel we really need to so something fast with this small brain mets!



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chrisS's picture
Replies 9
Last reply 3/14/2011 - 6:23am
Replies by: akls, Jan in OC, Anonymous, Carmon in NM, chrisS, Vermont_Donna

I wrote 2 weeks ago before our Maui vaca that my wife found out about brain mets. Was concerned about flying. The vacation was awesome! Came back and had her stereoscopic surgery on Wed. She was fine that night, and went to work the next day. Yesterday received a call from her work that she was having multiple seizures! She was taken to the ER and I'm in the ICU 15 hours later. There was no bleeding, thank GOD! She is under now and I'm waiting for neurology for the next step.
Has this happened to anyone else? I'm so mad at the stereoscopic surgery doctors made it seem so chill and never warned me that this was a possibility. Maybe I'm stupid for not thinking about it but I can't think of everything! What if she was home alone or driving??
I assume she will lose her license for safety. Anyone know of services in san Diego for this?

Concerned husband

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Cancer Sucks

What else do you tell yourself when naked fear once again seeps inside your bones and curls around your heart to hang on for dear life, Cancer Sucks. Driving home Bob and I become lost in our own thoughts, each trying to catch our breath with the news given at his doctor’s appointment. I notice tears falling slowly against my husband’s cheek as he tries to compose himself, my heart is breaking. We are both in shock once more and losing control in our life has become familiar ground. Talk of summer vacation this week has slowly disappeared in the background as we come to grips as our reality swiftly changes not knowing what our future may bring us.

In only 30 days 2 new lesions have appeared by Bob’s left eye. The melanoma cells have traveled from the tumor bed site that he recently had surgery on in January and gamma knife in February. The cells left there and have traveled in the lining of his brain (meninges) and have settled around his left eye becoming large enough for the MRI to detect. The doctor has recommended Whole Brain Radiation, 5 minutes per day/15 days. It’s the only way to treat the whole lining of the brain and for any melanoma cells that could be located anywhere else in his brain.

Radiation kills the bad cells and good cells, we know this... some memory loss, loss of his white hair and it will make him tired. He will start by Thursday end of day. Bob is getting headaches more often now and has difficulty sometimes with speaking, he is still working.

Also, I ask of those who are on this discussion board and know of WBR and have gone through it themselves to please add to this thread. My husband could use the support as this has shaken him badly. I do appreciate it and whatever words of encouragement you can give we certainly will appreciate it.

Thank you.

Please keep Bob close to your hearts in the following weeks.

Peace to all.

lovingwife to Bob, stage 4

If you would like to contact Bob

If you would like to contact our family blog site:

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Ellen's Brother's picture
Replies 7
Last reply 3/13/2011 - 11:40pm

Hi, My sister has melanoma stage IV. It would be great if there were any support groups, people in the same boat that she (and me) could meet. We live in New Hyde Park, NY.  I'm also perplexed by our health system. My sister is on disability using Medicare. Getting appoints, treatments... everything is in slow motion, meanwhile her health declines by the day. I'm frustrated, disgusted, and worried. Any advice would be welcome. Right now my sister is being treated through Winthrop Hospital. The tumors on her lungs were discovered December. It's now March. It's like all her doctors have forgotten her.


Thanks all,

Tom Mennin

Always hoping for the best, Tom M

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MaryMary73's picture
Replies 3
Last reply 3/13/2011 - 10:00pm

Maybe I'm being paranoid but after being diagnosed with a thin tumour back in late 2010, I'm wondering if a beauty mark on my calf may be another melanoma. It's small and round but kinda dark but not black or's brown. It doesn't fit the ABCDE's of melanoma lesions but not all melanomas fit that mold.

Should I speed up my first appointment with my dermatologist or just see him in April like I am suppose to (which is the 6 month mark post-diagnosis)?

Also, what will the dermatologist do during that first follow up appointment? Will he look at my skin from head to toe?

The only real wisdom is knowing you know nothing -Socrates

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Lisa13's picture
Replies 3
Last reply 3/13/2011 - 5:27pm
Replies by: Erica A, Carver, RMcLegal

I've recently had a wide local excision as well as the superficial lymph nodes removed from my right groin. 1 has tested postive for cancer, 1 other was very enlarged since my immunity was fighting the cancer and I'm still awaiting the remainder of my pathology report. My melanoma is deep (at least 8mm). PET scans show NED, but I'm high risk for re-occrurance.  That being said, I'm researching high dose Interferon and clinical trials using ipillmumab and a vaccine hoping to keep this away for as long as possible.  I'm also meeting with a naturopath next week

Is there anyone whose had a deep melanoma and lymph node involvement who've done any of these treatments and feel it's been beneficial?  My oncologist doesn't think Interferon is worth the side effects for the low benefit it's claimed to have.  I have a 16 month old daughter, so I feel I need to do whatever I can do keep this away for as long as possible, or until a fabulous drug becomes available that gives Stage 3 a much better prognosis in life.




Many impossible things have been accomplished for those who refuse to quit

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Anonymous's picture
Replies 2
Last reply 3/13/2011 - 1:29pm

It loads, and loads, and loads, but no chat window.  Running win xp with chrome, IE9, Firefox, dual core processor pentium 4.  All my internet EXCEPT this chat room works fine.  Whassup?

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Anonymous's picture
Replies 1
Last reply 3/12/2011 - 11:01pm
Replies by: aestep

My brother passed away from Melanoma in November, 2010.  One request he had was for me, his brother, to get involved with Melanoma Awareness and fund-raising if possible.  I've started a small awareness campaign and blog called "Black is the New Pink" ( but I am having difficulty finding any fund-raising or awareness events in the Raleigh, NC area.  If anyone knows of something...a run, walk, auction or whatever, I'd love to know about it personally and mention it in my blog.

Thank you...

Black is the New Pink - Fight Melanoma

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Replies by: adgesoph, NicOz

If anyone here is interested in reading it, there is a GSK melanoma trial for brain mets at


A Study of GSK2118436 in BRAF Mutatant Metastatic Melanoma to the Brain


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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Terra's picture
Replies 7
Last reply 3/12/2011 - 3:04pm

we just received news that derek has mets in his liver, largest 1.3 cm, in his lung and one on his 6th rib that is 4.5 cm - we will discuss treatments in one week a Princess Margaret in TO - with this news and no trt or worse yet no trt that works how fast might this happen - please give me hard facts - he is trying to balance quality of life with treatment - I know he won't continue with trt after trt if 1 or 2 doesn't work and need to know e.g. for leave at work etc. - not making sense I know pls answer as you might be able to

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I have not heard anything back from my CT abdomen and pelvis nor my chest xray from Tues 3/8 yet.  I called Thurs afternoon and left a message and still did not receive a call back.  I am putting the "no news is good news" mantra to the test this weekend!  Clear scans would put me "officially" 6 mths NED from a radical groin dissection in september. 

So, doing a partial happy dance and hoping to shake my booty full force by next week!


Do not fear tomorrow, God is already there.

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