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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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 ...new 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...
Boots

don't back up, don't back down

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Replies by: nicoli, gabsound

OMG! I LOVE IT!

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?

BIG WIN!

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

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Geez................  trying to research and be proactive is important but time consuming.  :-)    Since I'm less than 2 months in on this MM journey, I can only imagine how much time and how many questions have already been spent in the proactive research phase by other patients/participants on MPIP.  

I spoke with a clinical trial specialist today and the only clinical trial in my area is one with high dose Interferon, so I will speak to my oncologist about it.  I know there are both pros and cons regarding Interferon, and I am in daily prayer asking for guidance about making the right decision.

Molecular profiling (utilizing the Target Now program) was also mentioned.  Has anyone participated in this?  If so, was the information gained beneficial to your treatment?

Sharon in GA, stage III

~ Life may not be the party we hoped for, but while we're here we should dance. ~ (Unknown)

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see:  http://www.oncologystat.com/news/Bristol_Roche_Finally_Start_Combination_Melanoma_Trial.html

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

Gene

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

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I start my first ever treatment for my stage IV melanoma on Monday, June 6th at California Pacific Medical Center with Dr. Wang and Dr. Minor.  The regimen is IL-2 + interferon + 3 chemo drugs.  Here's a link to a whitepaper that helped to convince me to go this route.  http://theoncologist.alphamedpress.org/content/14/10/995.full  That, and the fact that my mutation is wild type NRAS Q61 so the new BRAF stuff isn't available to me. Although I like the approach of TIL therapy at NIH, I do not have a big enough tumor for them to work with, just many in the lungs, one lymph node and a bone met on my rib. 

Choel, username boot2boot on this board, started her biochemo today at a hospital in Ohio.  I spoke with her Tuesday and she seemed to be doing pretty well, but about as fearful as I am of the treatment.  Are there any veterans out there of biochemo or even IL-2 who can chime in and help me get my head into a better place?  I will be sure and post my experience as soon as I am able.

Thank you in advance for your comments.  This board has been invaluable to me.

God Bless.

Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Charlie S's picture
Replies 21
Last reply 6/3/2011 - 11:03pm

Over the past few months, several marketing companies have recruited people via the bulletin board to participate in paid marketing research.

Three questions.

Did you respond to the post, did you participate and did you get paid?

I am somewhat concerned about patient exploitation occuring here that benefits commercial enterprise.

No, I do not work for the MRF, but I do suspect pharma creeping in here and I do not like it, and it needs to be rooted out on any  patient forum before it takes seed.

Charlie S

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Here is an interesting abstract about GM-CSF:
http://abstract.asco.org/AbstView_102_84329.html

For more info on this drug that seems to have many names, including Leukine see:
http://www.chemocare.com/bio/sargramostim.asp

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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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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awg's picture
Replies 8
Last reply 6/3/2011 - 7:41pm

Hello Everyone,

 

I recently had a node dissection (with muscle moved) on May 18th and I and looking for feedback on recovery process.

I currently have all sutures still in place as well as 2 drains. The drains and sutures are schedules to be removed on June 10th. My drains are still producing between 75-100cc per day. I do not have any lower leg edema at this time but I do have some swelling and tightness in my upper thigh on the lateral portion.  I have no problem walking but the tightness is noticeable and my stride is guarded (by choice) to protect my incision site and sutures.

In your experience...

What is a normal average time for the fluid output to drastically decrease and or stop?

Will the tightness and swelling in my upper thigh decrease over time?

What are some techniques I can do once the drains are removed to assist in moving the fluid?

 

Thank you,

 

Allen

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alicia's picture
Replies 3
Last reply 6/3/2011 - 6:55pm
Replies by: SharonK, alicia

Hey friends,
I have an app to see a Dermatologist Dr Ellis in Nashville soon. Just wondering if any of you have ever been to him and have any tips as to what I should bring or questions to ask while there. I have had 3 melanoma primaries first in 2006 stage 3 with positive sentinel node did interferon, second was July 2010 stage 1 Clark 2, and third melanoma primary surgery this Jan 2011 stage 2 Clarks level 4. I see a dr at Vandy who is referring me to dr Ellis cause he says I have a genetic mutation and all melanomas occurred after pregnancy thinking the decreased immune system plays a big part in these new primaries. Im still seeing my local derm In ky but my dr at Vandy feels it's important to see this derm cause he sees a lot more melanomas and possibly may have a clinical trial or better advice. It's just a bit far 5 hr drive and I just wonder if u all think it's beneficial or would I be just fine seeing my local derm. I want the best care and to be ahead of the game if something does pop up. Have any of you ever been to him and what did u think?
I just turned 29 and was diagnosed with my first Mel after just turning 24 I feel like I have a black cloud over me but Im still trying to live life to the fullest and enjoy every moment with my babies n family. I know a lot of you are dealing with way more scarrier situations than me and I continue to pray for u all as I read the devastation on this board. Thanks for taking the time to listen and be there for me. You all are truly great:-)

Thanks so much for your time,
Alicia

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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 ...new 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...
Boots

don't back up, don't back down

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carol b's picture
Replies 16
Last reply 6/3/2011 - 10:26am

First Thank all of you for you words of encouragement and all your prayers. Im going back in the morning to see how many bags of IL2 i can take.. Please say a prayer for me as i know you all will.As My friends and melanoma family i

will take you with me to the hospital in my heart. I will talk to you in a week or so..Prayers for all of you. Patients and caregivers.

Carol Bellinger

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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EmilyandMike's picture
Replies 3
Last reply 6/2/2011 - 11:11pm

A few years ago, I never thought I would follow an oncology conference with excitement. But here I am and I am sure you have seen a lot of news on melanoma due to the upcoming ASCO conference this weekend since melanoma drugs are a top focus at the conference. The results of the Ipi trials are what I am waiting to hear about, but here is a good overview of the "Drugs to Watch at ASCO".    The last paragraph seems interesting - regarding the drug P28 for solid tumors:   http://seekingalpha.com/article/272953-drugs-to-watch-at-asco-2011

AND 

This press release came out today announcing a Roche/BMS combo trial for the BRAF inhibitor and Ipi.  Good news!

http://www.fiercebiotech.com/press-releases/roche-enters-collaboration-b...

Our experience with melanoma: http://emandmichael.wordpress.com/

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Rocco's picture
Replies 16
Last reply 6/2/2011 - 3:52pm

You'd think I wouldn't, but I still do - get nervous that is prior to scans.  This Saturday bright and early I'll be warming up the CT and MRI scanners at DFCI.  Would welcome any and all good vibes, prayers and kind thoughts you'd care to send my way!  My husband who is a kidney cancer survivor just received an 'all clear' from his scans 2 weeks ago...so I  hope to follow suit.

-Rocco, Stage IV sinc 2005

Luke 1:37

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Carol Taylor's picture
Replies 1
Last reply 6/2/2011 - 3:01pm
Replies by: EmilyandMike

Yesterday I found a site that updates medical news from around the world at least daily. Though they cover lots & lots of diseases, conditions, palliative care, insurance, trials, etc... this is the link to their melanoma news, which includes new trials & meds.

http://www.medicalnewstoday.com/sections/melanoma/

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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