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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MelanomaMike's picture
Replies 4
Last reply 9/23/2018 - 10:52pm
Replies by: ed williams, Anonymous

Hi family, alotta you know Whats up with me currently (3 diff Immunol meds arnt working for me), my question is, is it safe to say that trying Chemo meds like Interferon, Interleukin, Proleukin and other types not a even worth trying? Is that like going backwards? Im gathering that those meds have very little success with our desease compared to the Pembro, Ipilimumab & Nivolumab that iv done already...just curious! Please share..thanx!

Im Melanoma and my host is Mike..

www.covvha.net

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/24/2018 - 12:00am
Replies by: MelanomaMike, iskitwo

I have not posted any updates in a while so here it is... I am official 10 treatments in (treatments every two weeks) So far the treatment side effects have been pretty mild. I have lost the thyroid which was no surprise since my doctor had warned me that is was a possibility. The fatigue has been overwhelming at times but I have been working full time and still full time momming to a 6 & 9 year old. So for those that have asked if it is possible to keep working and keep doing the thing you love to do the answer is a big YES!! Some days you may need that extra nap or bed at 7pm but you can do it!! I have now had my second set of scans since starting Nivo and last scans showed NO cancer!! I have really had to take a deep breath and process that....I guess because I know how tricky this cancer can be. But today I am going to enjoy every moment....the best lesson I have learned in this journey!! I still have 8 months of treatment ahead of me but so thankful for treatment options. I lost my grandfather to melanoma 24 years ago and I know how lucky we are now to have all these treatment options. 

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Olytown's picture
Replies 3
Last reply 9/23/2018 - 11:46pm

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 10
Last reply 9/23/2018 - 8:47pm

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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