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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Lois54's picture
Replies 1
Last reply 6/4/2011 - 4:04pm
Replies by: NancyGM

Good morning--one of my friends posted this on my facebook. It is produced by DCMF in Canada, titled "Dear Sixteen Year Old Me"----very powerful!!! 

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Nebr78's picture
Replies 9
Last reply 6/11/2011 - 10:29am

Well, I opened my big fat mouth when it would have better to keep it shut.  I am the guy that has a friend that knew 2-3 persons that went to Mexico and came back supposedly cured.  (I got some emails that were quite disagreeable with my statement, quite disagreeable.  Thats ok.

My friend has reported to me they found a tumor on the neck of one of them.   They biospied it and he has  Mr. M. on his thyroid.   Friend said the guy spent $30,000 for what.

I apologize for maybe upsetting some people.  Of course it don't hurt to stir the pot once in a while.

The United States is not curing many people either.  I have 8 more radiation shots on the melanoma that has entered my spine.  Don't know how much chemo I have left.  I still can't help think there should have been a cure found by now, or at least  a treatment that will slow any and all Melanoma down promptly.  I  am having a bit of trouble getting a copy of my previous 2 ct-scans, one 6 wks. ago and the other maybe 9 months ago.  I want pictures of them.

I wish I could post the image that was made for me of the last scan.  And the  answer as to why in the h__they didn't start this radiation sooner. (Maybe someone sent them to Mexico????????) It is a darn good picture of the mass, spine, and aorta.    Thankyou

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Best wishes and prayers to all that this might help to fight the "beast".


Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Here is an interesting abstract about GM-CSF:

For more info on this drug that seems to have many names, including Leukine see:

Best wishes

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Replies by: nicoli, gabsound


I'm sitting here reading a book, with a sappy movie on in the background, and I hear this commercial come on TV about "so why are you dying for a suntan?".  So I immediately hit rewind so I can watch the whole commercial (thank God for DVRs). 

The commercial is pulls NO punches, and the visual is simply awesome.  While the voice over talks about all the things the viewer is doing to stay healthy, it pans over what looks like a closed coffin.  The coffin then opens to reveal a woman in a bikini lying in a tanning bed!  The commercial then very clearly states SKIN CANCER KILLS!!!  The commercial also refers people to a link on the Style Network's website for more information on skin cancer.

While melanoma isn't specifically mentioned, I absolutely LOVE that the commercial is so "in your face" with the tanning bed and that skin cancer kills.  And I got an even bigger "giggle", if you will, that the commercial is on the Sty!le Network - and in prime time no less!  How perfect is that?


"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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Becky's picture
Replies 8
Last reply 6/5/2011 - 8:42am

Ben had a Pet scan yesterday and my mom scanxiety was in full force. He got the news today, all clear :)

Kepp fighting, everybody



Mom to Ben, age 22. Oral melanoma (tongue) stage 3, one year of interferon. 23 months NED

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FertilityDoc's picture
Replies 4
Last reply 6/4/2011 - 9:15pm
Replies by: King, Carol Taylor, lhaley, awg

I just had my now biannual CT scan. Nothing of note to be found. The conditional survival curves tell me the numbers are looking a little better even though I know there is guarantee. I was diagnosed with Stage IIIB Melanoma in 04/2009. Had 2 positive nodes with microscopic disease but an ulcerated lesion. Had 2 weeks of the pity party but then moved on. I cursed the Meyer-Kaplan curves did. I know my tumor biology would determine the future and I have no control over that. It is the luck of the draw. I did the full year of interferon. Now 2 years later I sleep peacefully. I read the posts here at least once a week. I have to stay vigilant and read on the subject. None of know what the future holds. Sometimes I get teary eyed late at night when I read the heart wrenching stories here. My heart goes out to all desperately fighting for more time with their loved ones. One of reasons some of us come here is to read about the success stories. Hope is our most powerful ally. I post here today to remind everyone there is hope. Don't give up. Hug those close to you. None of us know what tomorrow will bring but treasure the day.

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LynnLuc's picture
Replies 8
Last reply 6/4/2011 - 5:29pm

I had my appointment with the ophthalmologist today...Dr Weber wanted me to go to one because I was having vision I know I am just getting old...and the fact my allergies will not ho away way down in sunny, humid and moldy Florida.  The anti PD 1 drug can cause blindness on rare occasions so we wanted to be sure my eyes were ok.. The eye guy says I have very healthy eyes,lens are clear and good, the nerves are great, the pressure is good and all the other stuff inside my baby blues are handing life very well. I have 20/20 for far away and I need plain old readers  to read close up...

Driving home was a challenge though..eyes dilated and numbing drops still in full effect  in them...sun so bright  it was like standing with a search light in my eyes...put on amber sun shades and drove slow all the way home. Went off the road a few times and had a laugh at my self because if the cops would have pulled me is a social worker who had the biggest pupils ever...I bet they would have had me do a pee test right on the side of the road! 5 hours later and they are still wacked out!

Aw... the windows to my soul show nothing going on...tis good news! On the 8th ( Wednesday) I get the scans, blood work and visit Dr Weber and if I am NED still I go on to  take my first booster IV of anti PD 1 since the trial 3 months ago.

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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sheri47's picture
Replies 1
Last reply 6/3/2011 - 8:03pm
Replies by: LynnLuc

 i know with breast cancer once you have radiation you cannot have it again in the same spot, with my mom the offered radiation for pain and to shrink the 3 masses  my question is if the masses grow bigger after rads can she have it again for pain control

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chenrydh's picture
Replies 6
Last reply 6/5/2011 - 9:56am
Replies by: chenrydh, Gene_S, Vermont_Donna, nickmac56, Anonymous

HI there - I will be finishing up my 4th infusion of IPI on the 8th of June, then will be following up with the scans over the next several weeks.  If the IPI has worked does anyone have any idea how long it would be inbetween time in order for me to do it again?  I've been told my other patients, as well as my drs. that the IPI has shown to have worked far after the last infusion so wasn't sure if it would be given again or I'd go into a wait and see pattern.  With melanoma and how fast it spreads I just am concerned about the length of time especially since I have mets in my brain and lung.  Thanks and to all who are dealing with this terrible disease stay strong and know that so many people are praying for you.  <3  

With God all things are possible. Never, never, never give up.

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jblue's picture
Replies 6
Last reply 6/7/2011 - 1:44am

Janaury 28th 1980 - June 3rd 2007


Our little girl  Josslyn

4 Years old



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boot2aboot's picture
Replies 0

More mel was found under my armpit...seems to remain local...found out this new info while in hospital for port placement consences urges more surgry with radiation and biochemo after....or something stronger if it has spread....won,t rescan until surgery and rad is done....last pet was may 17...

don't back up, don't back down

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boot2aboot's picture
Replies 8
Last reply 6/4/2011 - 3:15pm

More mel was found under my armpit...seems to remain local...found out this new info while in hospital for port placement consences urges more surgry with radiation and biochemo after....or something stronger if it has spread....won,t rescan until surgery and rad is done....last pet was may 17...

don't back up, don't back down

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Carol Taylor's picture
Replies 16
Last reply 6/4/2011 - 3:41pm

Carolb's sister-in-law posted this on Melanoma Prayer Center's wall less than 25 minutes ago:

brother just posted this...AT 10:35 her BP was79/65, at 10:45 it dropped to 61/22, at 10:55 it dropped to 48/30, they put her oxygen back on her and now at 11:00 its 51/27

Please lift her up.

Lord, in Your mercy, we lift CarolB to You. See her thru this and hold her family. Amen.

Grace and peace and sorry for how small that copied/pasted,


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

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Ranisa's picture
Replies 4
Last reply 6/6/2011 - 6:30pm

Had orginal mole removed on July 7, 2010.  Melanoma Dx on July 21st.  SLB and WLE on July 26th.  Results of SLB on August 5th.  Report says no cancer they got it all when they removed the mole on the 7th.  BUT I didn't get the report of all clear until the 5th.  I am just so looking forward to that 1 year mark.  Even if it is just a month sooner....kind of curious.

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