MPIP: Melanoma Patients Information Page

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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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lmato17's picture
Replies 14
Last reply 10/20/2010 - 5:50pm

I am being offered PLX4032 at Yale. Im not sure if I want to take the drug as I feel like it is a tease. All the research shows that the tumors start dissipating and then after months they come back with a vengeance. Has anyone taking this drug and had long term positive results? What are the side effects? Decisions decisions!! Im so sick of it. Any help would be greatly appreciated.



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Janet2's picture
Replies 3
Last reply 10/13/2010 - 9:49pm

My first whole brain radiation and my subcutaneous tumour on a different machine is planned for tomorrow morning (stomach) and brain afternoon and my second session is Monday for both. I don't know how I will be after it, but keeping my fingers crossed.


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sarahandkawika's picture
Replies 2
Last reply 10/13/2010 - 9:54am

Okay, I blew it and let the stupid Derm do a scrape biopsy on my arm. I won't bore you with details. But this spot is a dyspastic nevus. and of course there are leftover cells in my skin. So, this derm says let him remove all the cells (nope!). MY derm specialist says it is all up to me whether I do or don't, everyone has varied opinion...So I would have the surgeon who did my graft remove the rest if I do...but the question is do I ?

Any Opinions?


Sarah, stage 3A NED 3 months

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emilypen's picture
Replies 4
Last reply 10/12/2010 - 8:31pm
Replies by: King, Brandi, lhaley, Fen

HI all,

My husband had a PET scan this morning as it's day 28 of the study he is participating in.

We just heard that all the previously existing lesions and tumours have up to 50% SUV reduction. The doctors are thrilled and so are we.

CT scan on Nov. 3rd will hopefully show shrinkage, but we know it's working. He's reduced his pain meds and is in no pain.


Finally something is going in the right direction. :-)


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Lori C's picture
Replies 4
Last reply 10/14/2010 - 11:40am
Replies by: Sherron, rj, Fen, Pat from Ohio

I want to thank the remarkable people - patients, caregivers, and everyone else - from this board for their unending support during the time Will was fighting this disease and now, for your overwhelming kindness to me. 

Having lived in Israel & Australia, where melanoma is epidemic, I long had a fear of this disease.  3 years ago, I lost one of my dearest friends to it, after a courageous 9 month battle during which the cancer responded to absolutely nothing.  As she was guardian to her brother's 3 children - he and his wife had been killed in a car accident a year before - this disease seemed to me a vicious, relentless thief.

Will, and his fight, became a part of me in a way that I guess only caregivers can quite understand.  No matter where I was or what I was doing, all of my love and attention really belonged to him.   Will's lifelong fight for autonomy and independence astonished me in it's focus, and he brought the same courage to the fight against this disease.  But he could not do the research, find the resources, and weigh the many variables needed to really battle this monster, and that is where you all provided the most invaluable help.  My only regret is that I didn't find this board far earlier, and that is a profound regret. 

Right now I am feeling, as Jung said, "a fatal resistence to life in this world."  I miss him too desperately to imagine getting through this day, let alone those which may come.  For anyone who didn't know Will, but might like to, here are two - very incomplete - pieces I wrote about him

I will keep checking this board because I care so about all of you and because I need to stay connected to you.   I owe all of you more than I could ever possibly repay.

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Has anybody heard from Kevin from Atlanta?  He used to be on here quite a bit.  I hope everything is ok.  If you read this Kevin please post and let us know how things are going.  I think you may be finished with the Ipi by now???



I can do ALL things through Christ who strengthens me! Phillipians 4:13

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Misty Dobson Duanes sister's picture
Replies 6
Last reply 10/13/2010 - 12:45am

Hi friends,

This bulletin board is all too familiar to me....I just lost my brother January 30,2010 after he fought Melanoma for almost 8 years. I found this bulletin board years ago and after my brother passed and I posted the news I did not return to the bulletin board because for many reasons related to grief and coping.I miss my brohter desperately and I was with him until after his last breath, I told him I would continue fighting Melanoma in his name and that I would tell people how amazing he was.....this is my Mission in life until the day I die I will fight Melanoma.

Now I need your help. I am putting together a presentation so that I can talk to school aged kids about Melanoma and hopefully prevent a Melanoma diagnosis. I need to put some stories together ..I especially need to accompany the stories with a picture of the person who has had Melanoma whether they are a survivor or since passed from this horrible cancer. I need these young people  to relate and the best way to do that is to put together something that will keep their particular younger people and people that as a young person did something they feel may have led to a Melanoma diagnosis.

Please contact me at I would love to share yours or your loved ones story with others so that we can make a positive impact and save lives with awareness..... Please help. I look forward to hearing from you.


Misty Dobson

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I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

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I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

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ed_CT's picture
Replies 17
Last reply 11/8/2019 - 1:58am

More good news to share with "the community".   Just had my latest CAT scans and I'm still NED now just over 5 years since going Stage IV, 6 years since initial diagnosis at Stage III.    A brief history-  Diagnosed with Melanoma on left ear  Sept 2004.  One sentinal node microscopic involvement.   Went on a Cancer Vax trial in Jan 2005.   Scans 6 months later showed it had spread to liver and neck.  Had tumor removed from Neck - left Mel in liver so I could do a trial.   Started trial of Nexavar and Temodar.   Also went on an almost Vegan diet (ate some fish) and started taking Tumeric supplements.   Within 4 months liver Met had shrunk to "scar tissue".  Stayed on drugs at full strength for 1 year.   After 1 year they reduced the Nexavar dose by 1/2 and kept Temodar the same.  Stayed on this regimen for another year and then dropped the Temodar (this ended my involvement in trial).   Stayed on the Nexavar alone (still 1/2 dose with lots of breaks - more as time wore on) until I finally ended it in Dec 2009.   I still take Tumeric but not as regularly as I probably should and I have started eating some meat, eggs - dairy in the last couple years  although I still eat lots of vegitables and drink soy milk and avoid meat most of the time thanks to a very good wife (I guess she still wants to keep me around).  Unfortunately from what I understand out of 146 people in my trial of Nexavar / Temodar,  I was the only one with a "complete response".  I'm sorry it didn't work out for more people. I'm a little disappointed that my Onc at Yale still thinks I should get scanned in six months but I guess caution is a good thing.   Maybe I can convince the people at U of Penn I see to let me go 9 months.  

Hope this post gives people here some  bit of inspiration.   There a quite a few of us "Stage IV" survivors lurking on this board.  


Best wishes

Ed from Connecticut ("Ed_CT" - formerly just "Ed" until they forced me to change it.)

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Charlie S's picture
Replies 11
Last reply 11/14/2010 - 6:18pm

Almost to this minute, four years ago is when my ear on your chest  heard your last and final physical heartbeat ..

Wherever you are, the beat goes on.


Charlie S

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killmel's picture
Replies 2
Last reply 10/13/2010 - 3:22pm
Replies by: Sherron, Amy Busby

Hi Amy,


I have been away from awhile and just saw your post to Jamie.

You are always in my thoughts....I hope you are doing well. Please post an update. We all love you!

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Jaime.30's picture
Replies 2
Last reply 10/9/2010 - 7:08pm
Replies by: Jaime.30, amybusby

Eston was on Interferon for 10 months and it was stopped in late August due to what was thought to be stage progression to stage far doctors say the inflammation in his brain was not from Melanoma because not one cell was found.   He still seems to have what we call around here Interferon fog...memory slips or sometimes he just does not seem with it and some days he will wake up and you would have thought that he had just had a shot because everything hurts.  His joints are sore most of the time still.  I was wondering if this happens with a lot of Interferon patients.  Will these side effects go away eventually.  We have not seen the Oncologist since stopping the Interferon to ask these questions because he has been seeing the Neurosurgeon and was expected to go on to do his appointment is not until the end of the month.  Thank you Jaime

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EricNJill's picture
Replies 11
Last reply 10/14/2010 - 4:45pm

Eric's vacular tumors have been bursting.  We've been bandaging them up and tonight I changed one of the bandages because it was seeping so bad that it saturdated his sock at work today.  When I removed the bandage the odor was so bad I almost got sick.  I cleaned it with alcohol and still the odor was from the tumor awful.  His leg has recently become very swollen and this area as well as an area on his thigh where he has other vascular tumors is red.  I outlined the redness in pen to see if it grows, but I'm beginning to think he may have an infection.  I have never smelled an odor like that from his vascular tumors after they burst.  He is also running a fever of 99.1 right now.

I called earlier to our specialist in another state but they were gone.  What are your thoughts?  Anyone else had this happen?

Thanks, JillNEric in OH

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Anonymous's picture
Replies 4
Last reply 10/9/2010 - 8:36am
Replies by: A, Janner, EricNJill, Jaime.30

I recently developed pimple-like thing which is not a pimple. It is red in color and drives me crazy when I think about skin metastases. However, when I press on it, the color goes away. Is it possible for skin metastases to  "blanch"????

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