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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B-Trent's picture
Replies 12
Last reply 10/13/2012 - 1:00pm

Hi, my name is Brian Trent and I was recently diagnosed with Stage IV melanoma on August 15th, 2012.

My life with cancer started back in April 2007 where I was diagnosed with stage 1 with a .7mm lesion on my left shoulder.  I was very lucky to live in Houston, and found myself at MD Anderson where I was told I had a very early stage of cancer, but everything was treatable.  After a few scans, blood test, etc., I had surgery to remove the tumor in my shoulder and a lymph node under my left arm.  Scans and lymph node all came back negative.  Continued to go to MD Anderson for the first 3 years for check-ups/scans, then was told I could just see a normal dermatologist twice a year. 

As quick as I was told I had cancer, it was told it was all gone.  Kind of felt like it never happen, except for when I had check-ups at MD Anderson (never an easy place to go). Even on the 5 year anniversary of my initial diagnosis, it past without me even thinking too much about it.

A couple months ago in Aug, I started to notice a small node under my left arm.  At first didn't think too much about it, but decided to get tested.  Many scans and biopsy later, I was told I had Stage IV M1B (metastasized to the lungs) and needed to start treatment very soon.

I'm currently at MD Anderson getting the Mage-3 vaccine with HDIL-2 regimen.  So far I've done two rounds:

Sept 17th -- 23rd: Mage-3 vaccine + 10 out of 14 doses of HDIL-2

Sept 24th -- 30th: Week-off, which by the way, I got married :)

Oct 1st -- 7th: Mage-3 vaccine + 8 out of 14 doses of HDIL-2

Oct 8th -- current: off week

I'm on this site looking for information, and fellow friends fighting this same disease.

Oh, if anyone knows of any tricks for stopping the crazy itching sensations during the HDIL-2 treatment, please let me know!!!

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Richard_K's picture
Replies 6
Last reply 10/13/2012 - 7:35am


On October 9th, The Skin Cancer Foundation awarded their 2012 Skin Sense Award to the PGA Tour, Lucy Danziger, Editor-in-Chief of SELF Magazine, and Genentech with Genentech being honored for their drugs Erivedge and Zelboraf.  The Genentech award was presented by a patient currently using Erivedge and one using Zelboraf.  The honor of being the Zelboraf patient fell to me.  It was quite an honor.


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islandbreeze's picture
Replies 17
Last reply 10/12/2012 - 12:17pm

I had a biopsy of a flat mole and came back as malignant melanoma stage 4 with clear margins and 1.25mm deep. The dermotologist suggests chemo just in case a cell is moving around in there,the lesion was on my left loin on top of my hip joint.Plus I have many more moles and freckles all about on Im guessing a few of them moles need to be biopsied . I am not taking chemo or radiation.I will not live the rest of my days sufferiong the effects of these treatments.SO I am praying that all is clear after running tests.

Ive been ill since 2010 after my TAH and have been in my bed night and day .I go out once a week and that is a major thing for me as I exhaust myself easly.Chores at home cant be done without breathing heavy and feeling faint- its like my bones and muscles are cracking and about to burst & have to lay down to rest.Even taking a shower or fixing my daughters hair.I take pain pills that dulls the pain in my hips and spine daily so I can manage to get up and get something done.

So this stage of melanoma is terrifying as I dont know yet if its affecting any organs until imaging is naturally my children are afraid to lose their mom.

Time is a versatile performer. It flies, marches on, heals all wounds, runs out, longer then rope and will tell.

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I am going to the patient symposium tomorrow at MD Anderson.  If anyone from the board is attending please look me up so we can meet!


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Dr. Jeff Infante from Sarah Cannon Research Institute will join us next week, October 17th at 4pm Central Time, 5pm EST, 2pm Pacific time, to discuss the future of BRAF/MEK therapies in melanoma. Please send any questions
To register, go to: ... s/register

Phone Call-In:
+1 (917) 338-1451

Participant PIN: 982249# Free webinar: 

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himynameiskevin's picture
Replies 23
Last reply 10/11/2012 - 9:49pm

hi everyone this is Brenda, Kevin's wife.

i just wanted to let you all know that Kevin went HOME with the angels this past Sunday. I dont have much to say other than it was a beautiful moment. When we first got the news that his brain mets had began to bleed and there was nothing left to do, i told him that he couldnt go HOME with out letting me know, i wanted to be there holding his hand. So around 11:45pm on saturday i started to fall asleep and was awoken aroung midnight by Kevin trying to say something. I opened my eyes and he was facing me with his eyes slightly open, he was no longer breathing but his heart was still beating, and i knew, he was waking me up to say goodbye. I held his hand, told him i loved him and how proud i was of him, and thanked him for letting me share this moment with him. 

Through out this journey with him i was terrified of the thought of losing him, but when the time came, i couldnt help but look at it as a gift. We're not religious people, but i do believe with all my heart that we come to this world to experience, and when we're done we go HOME. And the fact that he is no longer sick, or stressing about scans, or dealing with treatments is the only thing that keeps me going. 

That makes Kevin a winner in my book, he handled this battle with gace and finess, and its not about beating the cancer, its about not letting the cancer beat you, and Kevin stayed strong until the end.

I know most of you didnt get to know Kevin as a healthy person, but i hope his attitude through out this will inspire you, and if theres anything to remember Kevin by, is his integrity, compassion, kindess and patience.

Kevin wore a pendant around his neck that read "never be lost", and i hold on to that pendant when ever i start to miss him, i wish i had a pendant for each and everyone of you to remind you that no matter how hopeless you might feel, you are never lost or alone, because Kevin's spirit will always be there holdong your hand.

i love you all, and so does Kevin.

love and healing

<3 Brenda, Kevin's wife.

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kpcollins31's picture
Replies 2
Last reply 10/11/2012 - 6:18pm
Replies by: JerryfromFauq, dellriol

I had surgery on 9/25 to remove an "in-transit" lymph node in my upper left arm that came back positive for melanoma after the biopsy. They also performed another SNLB - took two additional nodes in my upper arm and one more in the traditional armpit location. Surgery was done by Dr. John Stewart at Wake Forest Baptist Health cancer center -- seems like a great doctor - very confident, very personal.

Just had my follow-up this morning - PET scan clear, aside from the one bad node, the others came back negative so this is the best news I could have.

Doctor originally suggested I consider the Polynoma vaccine trial (POL 103A), but apparently I cannot qualify because my primary was greater than stage 2A. Since I am not interested in the interferon vs ipi trial, we are doing the wait and see approach with a 3 month follow-up.

For those scared of the lymph node biopsy, do not be - 11 days after my surgery, I was pitching batting practice for my son with the same arm I had surgery on. Recovery is not bad at all. 

I am ready to beat the beast.



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dellriol's picture
Replies 6
Last reply 10/11/2012 - 12:57am

Went in today for my checkup after 6 months on Z.  So far my brain tumor is stable to slightly decreased, but my lung tumors are way down. CAT scan noted 6  nodules before, ranging from 4mm to 1.2 cm. Now they find 4 nodules and the biggest is 5 mm.  They have also noted lymphadenopathy in the past and say NONE now.  I'm taking 6 pills a day, and since they started me on 10 mg Prednisone to go with it, my side effects are minimal.   Just had to share my news.

This ain't no hill for a stepper.

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I officially start my 14th month on Zelboraf.Thank God that I am B-raf +.This drug is a lifesaver for me and so many more.Dealing with the side effects for me has been tolerable.They do sort of come and go as I contiue with"Z".I aim to be a glimmer of hope to many stage 4 fighters.I have been following the posts of Dick who is going on 31 months of "Z" and still counting.Hang in there.They will find a cure.Meanwhie never forget to thank God and live. Beat the Beast.  Al

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Rik's picture
Replies 12
Last reply 10/10/2012 - 9:35am
Replies by: Rik, POW, lhaley, kellygrl

Dear all,

Four years ago a melanoma was found on the back of my brother. Fortunately, they can be surgically remove and no metastases were found.

My brother is now 31 years old and father of a beautiful daughter of one year.

Unfortunately, in April of this year, they found a metastasis. This time in his head. Fortunately, they could again surgically remove the tumor. The tumor was located on the outside of his brains. Again there were no metastases found after the scans. 

Unfortunately, it ran all wrong from than. My brother showed a bacterial infection to have walked in the operation; meningitis. He went into a coma by the meningitis. Fortunately he awoke, but he had some damages in his brains and physical he was bad at that moment too. He had to rehabilitate. He was working on that for the last two months in the rehabilitioncentre. 

The result of a routine MRI came last Friday, this revealed that again metastases were found in his head, this time at 3 places. We all did not expected this. This week we had many conversations in the hospital, they can not surgically remove the tumor because they are in the brains. Radiation is dangerous and not recommended by the neurologist. The last remaining option is medication, Zelboraf. The hospital, here in the Netherlands, is not very keen on it. They indicate that the probability that Zelboraf works on brain tumors is 40 percent and find the side for my brother too dangerous. Zelboraf in the Netherlands is only recently officially approved drug, but data regarding Zelboraf and the effect on brain tumors is very limited the oncologist told us. We are now busy deepen what Zelboraf can do for my brother and whether this without many nasty side effects. If Zelboraf can extend my brothers life with months (they diagnosed him to life for 6 - 9 months) this would be so beautiful. His daughter is 1 year old, and every month they can life together (in a reasonable way) together is so important for all of us.

Please let me know if anyone has experience with Zelboraf with a brain tumor and what the effects have been. My brother is indeed in a bad condition by the complications of the previous operation. We want to exclude that Zelboraf damages his life even more, without the chance that Zelboraf works for him is very large.

Thanks in advance! All comments are welcome. This is so important for my brother! 

Kind regards,

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Here is a link to the results of the HyperAcute Melanoma Vaccine with PEG-Intron trial at Ochsner Medical Center New Orleans. I completed twelve rounds of high dose interferon with vaccine in September of 2009.

I was Stage IIIB with a primary on my upper back. 2.5mm ulcerated nodular amelanotic, Level IV.  Had the usual wide excision in January 2009 and Sentinel Lymph Node Mapping. Unfortunately the Lymph drainage was traced to both sides of my neck. Sample nodes were removed from both sides in March 09 and a microcell found on the left side of my neck. A neck dissection in May 09 removed 26 additional nodes with no additional cancer found. I started the HyperAcute vaccine with Interferon in Jul 09.

The trial went well with the normal sickness from the mega doses of interferon but no issues from the vaccine.

I have been NED since 2009. The results show 11 of the 25 Stage III's and IV's still here. I developed vitiligo (a slight case on my arms) which apparently was a good sign.

I don't know if they are going to repeat the trial, or if anyone who frequents this forum has heard anything about it, but I wanted to share the published results that I found. For those of us who stay on top of all the treatment possibilities, it's an interesting read of using our own immune system to reject introduced melanoma cells marked or spliced with mouse genes.

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Ronskidtexx's picture
Replies 7
Last reply 10/9/2012 - 9:24pm

My second quarterly scans came back this week. After being told I may have a year to live 8 months ago, I continue to be NED! I had a radical neck dissection, with 57 lymph nodes taken (clear) as well as a tumor in soft mass of rib area. The tumor taken out of my neck was over 1 Pound in weight. Radiation to neck (5 sessions) was my follow up treatment. Am currently on no meds.

The power of prayer works. I will never give up.

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Laurie from maine's picture
Replies 39
Last reply 10/9/2012 - 9:21pm

A couple of years ago people on this site did what I think they called an old fashioned bell ringing -  I believe the way it went is everyone went on and signed in and said they  were ringing a bell in memory of someone.


I wanted to say bells are ringing loud and strong here and maine for kevin!

laurie from maine

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simone's picture
Replies 3
Last reply 10/9/2012 - 7:38pm
Replies by: simone, Swanee, Janner

Hi and sorry... I really hate to take the time from all of you with much more serious issues right now.  That said, I'll try to keep it brief and thank you in advance for any feedback.

In the last 2 yrs since my diagnosis with Melanoma (1B), I have had 1 or more basal cells diagnosed after every visit (every 4 months).  I've been using the Plastic Surgeon that my group  recommended but now wonder if I should be using the Mohs surgeon for these?  My basal cells are all on my face or chest and I imagine I'll be running out of skin soon if I keep using the Plastic Surgeon b/c it's usually 10 stiches per basal.  I am asking now becasue at the rate I'm going (and at the rate my family members develop basal cells), I thought I should come up with an educated plan.  My Mel Specialist does not like the topical chemo (sorry do not have name) because it makes it hard for her to track.

Any thoughts?  Once again, sorry to ask such a trivial question but I didn't kow who else to ask.  Thank you very much.


By the way... Celebrating 2 years NED this weekend!  :)

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Billy Mac's picture
Replies 1
Last reply 10/9/2012 - 6:46pm
Replies by: DeniseK

Hi, I just joined . Check my info. I have stage 3a melanoma, and we are talking about radiation followed by peginterferon. I am complicated, I also have the autoimmune desease Sarcoidosis, this make other treatments bad if not impossible. Any ideas?

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