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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Olytown's picture
Replies 1
Last reply 9/23/2018 - 3:27pm
Replies by: jennunicorn

I'm a stage III melanoma survivor and following surgery 2 years ago, I have had good body and CT scans. I used to be very active outdoors : running, hiking, kayaking, swimming, body surfing, etc.  I've become afraid to even go from the house to the car to go to the store. I do follow the advice of my oncologist to choose outdoor activities during times that my shadow is longer than me. I cover up with UPF clothing more than relying on sunscreen and I even wear UPF gloves.  I have become somewhat outdoor-phobic though, and it is limiting my previously active lifestyle. Sometimes I get depressed about it. When does it feel safe to be outside again? I have turned down some fun invitations due to fear. 

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aldrichdesigner's picture
Replies 3
Last reply 9/23/2018 - 2:28pm
Replies by: HeidiZ, MelanomaMike, Gene_S

Think we could all use this boost from time to time to understand just what's possible these days. All survivors please respond but I'm selfishly interested in the stage 4 numbers ...

I'm going on 1.5 years since being diagnosed stage 4 and another 9 before that when they found the primary. So I'm already at 10.5 years since my very first positive biopsy. Currently stable and on keytruda and really hoping to get another 10.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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Momofjake's picture
Replies 13
Last reply 9/23/2018 - 11:29am

Okay!! 

Hi there:) I just want to post some happy stuff even though we are in the hard place. This board just makes all the difference. I am the quiet reader most of the time and Jake is pretty private so I try to respect that. 

But the odds of Jake from Utah and Brian P from North Carolina being in California and meeting for a visit are just too slim to be a coincidence. Jakes first talk with anyone really. Brian was great and Jake got motivated!! He is ready to start a trial with Dr Hamid in LA and seeing if he is eligible for Brian’s trial in Houston! Brian helped get the doctor on board. 

The wreched beast has made its way to Jakes heart, brain, bladder, bowels, bones, muscles....but Jake is okay:) He feels pretty good despite the SRS, terrible biopsy through his entire torso yesterday and the constant travel. We got this. 

Many thoughts and prayers...that means you Celeste! The board changes lives. It’s changed ours. We got this!!

With gratitude for you all here, truly, 

Kerri

 

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Hi guys, in my original post this morning titled My CT Scan Report is In (i think that's what it reads), iv replied to each of you & thank you again, by doing so, the day flew by & im done sulking & "oh god im gunna die sooner then expected!" Lol...you all Rock!
Mike..

Im Melanoma and my host is Mike..

www.covvha.net

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RichInLife2's picture
Replies 1
Last reply 9/21/2018 - 10:10pm
Replies by: bjeans

Hey, anyone know how to contact MRF support for an problem I'm having with my account? I've searched around on the website but I can't find it anywhere. Thanks.

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mike_nj's picture
Replies 4
Last reply 9/22/2018 - 7:31pm

Greetings

Just wanted to stop in and say hello.  Name is Mike from near Princeton NJ and turned stage 3B back in 2004 after a stage 1A diagnosis back in 1999.  Working as a chemical engineer and hope to retire next year.

Went to high school with George R R Martin who wrote Game of Thrones.  We were in the chess club back then but he was no match for me!

So far all is still well with me since then after axilla dissection, radiation, and clinical trial back at UPMC with peptide vaccine called Mel43.

Back when I progressed to stage 3B, the mpip chat room was a literal life saver.  Every evening, after work, I got to know many of my colleagues with this disease and we supported each other every night as we chatted about everything, melanoma related or otherwise.  Not sure where the chat went, but it was really dynamic back then.

Some of us did OK and others were not so fortunate and I was thinking about a few members earlier today.  I recall a brave woman form the UK named Imo, who joined us in chat frequently,  and I remember her last post "Off I go", as she was traveling somewhere to get treatment and that was her last post.  There were many others though that beat the odds. 

Wishing all the new patients and those battling this for a while the best and hope you all well.

Mike K

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Raeofsonshine's picture
Replies 5
Last reply 9/22/2018 - 2:33pm

Hi there!
Any thoughts from anyone with the same sort of history would be so greatly appreciated.  Had 2 rounds of Ipi/ Nivo late last year.  Due to a plethora of problems - as we have all faced on treatment- we stopped infusions.  Last treatment was 12/2017.  Scans in May showed great response- in transit mets in leg - 7 or more- had shrunk or disappeared completely.  Fast forward to scans in August and I have 2 new growths in the leg, confirmed with a core biopsy- active mel.  For real?  BRAF neg so looks like the only option I get right now is TVEC.  This is only because my doc does not want to pull enough tumor together for the TIL trail and still leave plenty in my leg for monitoring.  I asked if I could just "wait and see if it continues to grow" and he does not want me to wait.  Thoughts from those that have had the TVEC injection?  Should I be getting a 2nd opinion?  My doc is at University of Colorado Melanoma Clinic so I know I'm not dealing with someone that isn't abreast of current options and information. 
Thank you all and I hope you all have a great weekend and stay strong!
Ann

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