Off-Topic Forum

The MPIP Off-Topic Forum is a community bulletin board that provides the melanoma community with a safe space to share experiences and to give and find support from others who can relate to having or caring for someone with a melanoma diagnosis. Please note: if you have an urgent question about melanoma to ask the community, visit the main MPIP Forum.

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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Nad T's picture
Replies 2
Last reply 8/9/2010 - 6:02am
Replies by: Anonymous, dian in spokane

Check in, Gene Hackman.

No funny shit.

Danio

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Amy Busby's picture
Replies 6
Last reply 8/13/2010 - 1:40pm

Hi all!  Sorry I have not been around much, although quite frankly it doesn't look like I've missed much!  haha

That was NOT to be taken as a challange to create controversy or heaven forbid start some political bs posts!  Yikes!

I just wanted to let you all know I'm still hanging in there with this intrathecial IL2 (into a post directly to the part of the brain that produces the spinal fluid).  It sucks of course but I am able to avoid many of the worst side effects from systemic IL2.  I don't have swelling or water retention so therefore I'm not really in danger of any kind of organ failure, just brain problems and severe naseua / spinal type headaches.  But I've had no seizures or anything.

My fluid has been coming back clear of mel. the last few weeks and my last scans even showed some lightening of the enhancement in the lining of my brain.  That's called leptomeningial disease (LMD).  They don't really measure it the way you would solid tumors but you can absolutely see it's either shrunk or become less active when you see the pictures.  That's a nice bonus and Dr. Papa says is a pretty unique response since I have not had to added any WBR or Temador or anything.  Straight IL2 like this is more a clear the fluid / stop the progression treatment.  So I'm thrilled about that obviously.  No new body spread either which is a big relief since I've had to be off the GSK BRAF inhibitor.

I've been more active on facebook lately so ya'll can look for me there - Amy Griggs Busby.  But I am getting the hang of the bb changes so I'll try to pop in more.  Of course I'm peppy now since I have had a brief IL2 break.  Tues I go back in and will then feel like shit and too tired to post, lol.

Love,

Amy

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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KyCyn's picture
Replies 8
Last reply 8/7/2010 - 4:36pm

My poor, dear brother, he's had a time of it lately - prostate cancer (he had his prostate removed, so far so good), some other type of cancer that I can't even remember, much less pronounce, that is also so far so good, and last weekend, he was working on a garage door for his job and the spring somehow came loose.  It crushed three bones in his right hand, plus laid open a couple of fingers, and sliced open his left arm as well.

Bless his heart!  The silly man drove himself home, calling his wife when he got close to meet him in the driveway because he thinks he's cut his fingers off.  He doesn't remember the accident or the drive home, and his wife said he was in shock when he got to her.  Luckily, VERY luckily, it was his hands/arm that got hit and not his head or chest... and also, VERY luckily, he didn't pass out on his way home, and also, VERY luckily, a hand surgeon from Louisville was doing rotation in our town that day and did the surgery that evening.  The bones were so crushed that they couldn't put pins in, they had to put plates in instead.  Don't know what that means for long-term prognosis, but they did say he'll have some type of movement.  I have a feeling it's going to be a long process.

But beware those garage door openers!  I have a friend who knew someone who was seriously hurt, and she is so spooked she opens her garage door before going into the garage... I have to admit, I'm a little more leary, too.

So that's my news of the day :)

Cyn

 

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Fountainhead's picture
Replies 8
Last reply 8/8/2010 - 11:20pm
Replies by: dian in spokane, KyCyn, DonW, Fountainhead, Anonymous, TinaR

Really. Must we start a new thread about everything? HOW INCONSIDERATE!!!!!

By the way, here's a pic of my wrench beside a plate of cookies:

 

 

Enjoy.

-Fountainhead

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/10/2010 - 3:01pm
Replies by: Anonymous

In my opinion, some of you are being rude and obnoxious by knocking other threads off the page, with your repeated experiments in picture posting.  No one is going to go to page 2, so please allow some recent threads to endure for a while.

Try to economize. Keep you experiments within the same thread, please. After all, how would you like it if I wrote 5 or 10 more separate posts about board manners?

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Kimmer's picture
Replies 1
Last reply 8/5/2010 - 3:59pm
Replies by: kwahlbin

I just noticed that the other pics I tried are the size that I intended...you fixed them from their colossalness!  Trying one more time:

 

Hubs at the Helm  Hubs at the Helm

 

This time I used one of Photobucket's preset sizes from the edit menu; might have helped too.

Thanks!  You rock.
Take good care, K.

And remember, no matter where you go, there you are. Confucius

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Just Keep on Hanging In

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Bonnie Lea's picture
Replies 1
Last reply 8/5/2010 - 9:57am
Replies by: Bonnie Lea
Just Keep on Hanging In

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Bonnie Lea's picture
Replies 1
Last reply 8/5/2010 - 9:12am
Replies by: Anonymous

 

This picture size I made into 200 what evers.  Tis for my ruminating kitties.

Just Keep on Hanging In

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Anonymous's picture
Anonymous
Replies 0

You thought they were collecting the garbage when they went down the aisle with a plastic bag in their hands repeating, "You're trash, you're trash, you're trash" ?

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Anonymous's picture
Anonymous
Replies 0

Testing....

 

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