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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davidroten's picture
Replies 0

Has anyone ran into pseudotumor cerebri wife is stage 4 now and has been diagnosed with this condition.

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LynnLuc's picture
Replies 4
Last reply 9/27/2011 - 12:36pm

I also saw Dr Weber and discussed going back to work. He thinks it's a great idea and says I am doing awesome. He also says I am ona good drug and feels very good and believes I will continue to have positive results...dare I hope! I have 2 more treatments and then I go to anti-pd-1 (MDX 1106) every 3 months....hoping to remain NED! Just wanted to share the news!

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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carol b's picture
Replies 6
Last reply 2/4/2011 - 9:59pm
Replies by: DonW, carol b, KellieSue, Fen, triciad

I will find out tomorrow if i am B-RAF positive. Many prayers are needed as i feel it is the best treatment for me.. I found a new tumor under my breast on the rib bone last night about the size of a pea. I guess mel has broken out of the lymph nodes. I dont know what to think about that. Any ways, prayers for u all and thank you all for your stories of inspiration and hope. Praying all is well with all of you

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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elefk's picture
Replies 2
Last reply 2/2/2011 - 2:05pm
Replies by: Lori C, King

I am stage 4 without ckit or braf mutations. What are your best ideas for treatment?

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elefk's picture
Replies 2
Last reply 2/2/2011 - 4:24pm
Replies by: LynnLuc, Fen

I'm stage 4 and my melanoma oncologist is recommending a clinical trial using sutent and avastin together. It blocks the formation of new blood vessels that feed the cancer. Does anyone have any experience with these drugs, eitther first or second hand?

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Jydnew's picture
Replies 7
Last reply 2/7/2011 - 11:20am


Due to the big ol' storm coming through the east, my husband's oncology visit was canceled tomorrow.  But his bloodwork shows that he remains NED.  It was 9 years ago this month that he was diagnosed with Stage IIIA Melanoma - 1.33 mm non-ulcerated primary on the the tricep area of his right arm.  He had microscopic deposits in 1 node, found on sentinal node biopsy.  He had a complete lymphandectomy 6 weeks later  - other nodes were clear.  He did no additional therapies.  He gets a CT scan each year, and semi-annual bloodwork, and semi-annual oncology and dermatology visits.  We are vigilant but don't live in fear.

He was diagnosed a week or so after we returned from our honeymoon in New Orleans, a week after his 26th birthday.  We celebrate 9 years of marriage and 9 years of NED, as well as his 35 and my 33 birthday this month.  It's a good month...

I post an update for him every 6 months because I wanted to see these updates 5, 6,7,8, 9 years ago.

Wishing you all the very best health,


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Suzan AB's picture
Replies 2
Last reply 2/1/2011 - 7:42pm
Replies by: Suzan AB, LynnLuc

I received hard news today, mets/tumors in my right lung have grown and shown increased uptake.  I have one node in my left lung and nodes above and below my collar bone.  I have read that complete lung removal with treatment has a better survival rate than just getting clear margins (I have a paralyzed right hemi diaphragm with aceiation (misspelled?)  to the lower part of my lung with a large node sitting in there as well as a couple of nodes in the upper part of my right lung too.).  Seeing Dr. at UCSF on Thursday to discuss treatment.  Any suggestions will be greatly appreciated or stories about treatments that worked.

My best to all...I am kinda of numb right now...

Suzan AB

Presently...One Day At A Time.

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Hi Everyone,

     It has been awhile since I have posted.  I lived here at one point from 1999 until around 2007.  It was my life, my support, my escape, my everything as I walked the walk of lung mets and brain met.  I had just gotten divorced when dx with my brain met and this is where I would come  to laugh, to cry and get opinions.  MPIP was my ROCK and I would like to think all of us were ROCKS for each other.  I remember the laughs we had in chat and at times we had to take a deep breath when a newbie came in.  We all knew each other, we knew our families, we got together in Asheville twice, florida, Vancouver, Camano Island, and Dallas.  I know I personally would never have gotten through those difficult times withoiut everyone here. 

Kathie and Tim, Don W, Dian from Spokane, Angie, Mustang Sally, Charlie S, Kim K, KIm Iowa, The Indiana ladies, Claire and Meghan, Guten Tag, Nan, Leslie F and David, Dan and Jackie T, Kag adn her husband Jim, Johno, John from florida, Bill MTL, Pam and Mike Ok, Claudia V., Mary P, Dawn C, Debbie R, Debbie NC, Barbie Girl, Melissa L, Melanie, Heather who had moved to canada to be wtih the love of her life,Whoha, Bill Fla, M arie and Ed, Wendy, Mr.Ed, Shannon, Amy B., Jackie Doss, David from Richmond and later WI..Carver, Janner, Lennie, Misty, Swatts,Jack NYC,and my friends Bonnie and Chip who are still with me on this journey despite loosing thier spouses......   and oh so many many more.    I love and miss all of you soooooooooooooo much. 

I was dx in '95 and did well until the middle of my divorce...  and 4 1/2 yrs. later.. Wham!!!!!!! Lung Mets..  then ten months later Wham!!!  Brain Met.  I decided to do alternative therapy.  Why?  I knew my options and I knew the survival rate. I PERSONALLY did not want to be sick if I had a short time to live. I had just gotten divorced..  LIFE IS TO LIVE TO LOVE AND TO LAUGH..  and that was what I wanted to do.....

I chose to do Anthroposophy medicine giving myself injections.  of mistletoe, astragalus and formica.  it worked for me.  I also decided to be very very selfish I NEEDED TO TAKE CARE OF CAROLE.  As patients and caregivers we have to do that.  We have to take the time for ourselves , down time and just time for ME..  BE SELFISH,  DO WHAT YOU WANT TO DO.. TAKE CARE OF YOU. 

I know how difficult this journey can be NEVER EVER GIVE UP HOPE and do the treatment YOU WANT TO DO.  YOU KNOW YOUR BODY,  IF YOU DON'T AGREE WITH YOUR DOCTOR, TELL HIM.  I left a doctor because he would not respect I WAS THE PATIENT..  it was MY LIFE. 

Ten years has not been without it's mountains to climb.  I keep putting one foot in front of the other...  In this time I have built a new house, lived in Sanibel Florida and Asheville, NC before coming back to reality and live life at the beach.  I have been blessed to see both of my daughters get married to wonderful young men and to see the love of my life.. MY GRANDSON come to this world.  I alwasy knew a perfect man would come along.. He is 2 1/2 and the love of my life, he makes me laugh, laugh til tears roll down my face, we talk and then Mommy has to be ther translator.  lol.  He makes my heart smile.  I am so blessed.


















IT DOESN'T MEAN LIFE IS PERFECT BY ANY MEANS.  Just look for the gifts this beast has brought us.  take the time to tell everyone in your life how much you love themi, write them letters for them to treasure, take lots of pictures, make lots of memories.  Hang TOUIGH AND KEEP MOVING FORWARD.  To each of you I wish you love, light and joy in your life

Love and Light


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Anonymous's picture
Replies 1
Last reply 2/1/2011 - 2:50pm
Replies by: LynnLuc

Good day,

I am new & trying to learn.

Please tell me the difference between a cutaneous tumor vs sub cutaneous tumors.

Thank you for your help.


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We are conducting a global study on malignant Melanoma and seek those diagnosed Stage IIIC or IV to participate in one hour telephone interviews.


The purpose of our study is to understand the full impact of malignant Melanoma on patients, including the physical, emotional and social impacts.  


In the interview we will be talking with you about the journey you’ve been through since receiving your diagnosis, covering topics such as the impact of your condition on your daily life and your experiences with different treatments you may have received. The results will be used to assist in new product and treatments under development for this condition.


All information gained is reported anonymous and respects patient’s confidentiality rights.


Honorarium is $200 for participation.


Interviews may be scheduled between 8AM & 8PM February 16 through February 23.


Please respond with interest or questions to contacts below.


Kind Regards,


Jan Mallery-Groom RN

Clinical Research Support Services

+510-922-9710 /

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Terra's picture
Replies 3
Last reply 2/1/2011 - 7:26pm
Replies by: Anonymous, lhaley, Sharyn


My husband, Derek, had lung surgery on Jan 17 for a lymph node in his right hilum, that had been there for 2.5 - 3 years.  The surgery went well, it was longer than expected because the node had grown into the outer lining of his trichea and windpipe therefore they had to take out his entire upper right lobe and part of his windpipe and trichea which they patched up with lining from his heart and then patched his heart up with a mesh.  He is recovering very well, this is his second lung surgery since progressing to stage 4 last spring with a nodule on his left lower lobe.  We are hoping he is now cancer free, waiting to see the onc and schedule a scan, we know there are suspicious spots in other places so we are hoping for a systemic treatment of some kind.  Several onc from the tumour board meetings in Toronto viewed his scans pre-surgery and all agreed there were too many questions about each spot to think any of the others were cancer - hoping they are right!


Thank you so much to Tina (& Tony) from Australia who graciously answered my questions about removing a right hilar node and who suggested we get another opinion from a cardiothoracic surgeon vs a lung surgeon - which we did and thankfully after 3 opinins we found someone who said yes it was resectable!  Thank you so much Tina!



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NicOz's picture
Replies 7
Last reply 2/2/2011 - 3:49pm
Replies by: MaryBZ, KatyWI, NicOz, cindyeh

Won't be around for a couple of days so just wanted to wish you all the best with your surgery. Will be thinking of you and sure you'll find it a piece of cake! Take care, don't over do it when you get home, and get lots of sleep to help the healing along.

Go get 'em, girl!!



Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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MRFUser2011's picture
Replies 13
Last reply 3/6/2011 - 10:11pm

I am scheduled for VATs next Tuesday to remove a 2.1 cm lung nodule in my lower right lobe.  CT and PET/CT confirm it has doubled in size in 3 months and has high FDG uptake.  I know this surgery can be very straight forward and if all goes well, I can expect a fairly quick recovery.  I would appreciate positive feedback regarding things that might help this procedure go better or make me more prepared (please don't scare me!)  

So if you have had VATs and there is anything that you wished you had known ahead of time because it would have helped you pre or post op, please let me know.  Thanks!


Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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LynnLuc's picture
Replies 2
Last reply 1/31/2011 - 11:10pm
Replies by: Lori C, Amy Busby

Yesterday while visiting my friend in the hospital as she had her surgery to remove a grapefruit mass of melanoma from her intestines...the nurse said somethings about care,insurance etc etc..

She said there have been  many times that during chemotherapy  insurance companies would drop their clients because of the expense of chemo so then they would have to stop treatment and wait until they get approved by Medicare or Medicaid...that really shocked me...the she also said a lot of insurances only allow you so many days as inpatient given a specific  treatment even if the patient hasn't recovered enough...she came right out and said that if the pateint is on Medicare and Medicaid that wouldn't happen to them...that totally was the opposite of what I thought...I thought Medicaid and Medicare would cover the least....

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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ValinMtl's picture
Replies 13
Last reply 2/2/2011 - 10:36pm

My doctors believe that melanoma has now spread to my left groin (confirmed to me tonight)...was always on my right leg before.  The ipilimumab did a wonderful job of 'stopping' my cutaneous growth problem on my leg but now have several new subcutaneous growths on the right leg plus am swollen in the left groin area. Last scan in November showed 20% increase in left groin area and 30% decrease in right.  I have a Pet scan this Friday and - the 2nd CT scan on 21st to see if I am eligible to re-enter the ipi trial.  The only other option I have here is the Dicarbazine and IL-21 50/50..of course, I would like the IL-21  but with 2 arms of a trial you never know where you end up. They have B-RAF trial but I am negative, darn.

I would like a back-up plan if I'm thrown off the ipi trial. Preferably IL-21 or biochem, is anybody aware of a trial that I could possibly be eligible for, having done ipi and interferon. In the meantime, I keep ploughing through the clinical trials.  Many thanks for any help offered.  Val

Live Laugh Love Nothing is worth more than this day!

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