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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Bonnie Lea's picture
Replies 1
Last reply 7/30/2010 - 5:38pm
Replies by: Kimmer

so my brain is working but mayhap too much.  I only want to show one pic-a-chure not the whole thing.... (only six) but still)  I shall try again another time.  Don't worry I won't drive you all totally insane, but I am like a bear with a sore backside or a mean dog (is there such a thing?) with a bone to gnaw on.

Just Keep on Hanging In

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KyCyn's picture
Replies 2
Last reply 7/30/2010 - 5:23pm
Replies by: StanN, Kimmer

Every single time I log in, it doesn't recognize my password.  Every. Single. Time.

So I hit 'forgot password,' I get sent a link to create a new one, I put the password in, put the code in, hit SAVE, and we're good to go.

Until I log out and try to come back again.

Could this have anything to do with 'cookies?'  (and don't laugh if that's a ignorant question, or at least laugh quietly!).

The reason I think that is because I believe the 'cookie' disable thingy is on my work computer...

 

Cyn

 

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Bonnie Lea's picture
Replies 1
Last reply 7/30/2010 - 5:33pm
Replies by: Kimmer
Just Keep on Hanging In

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/30/2010 - 4:19pm
Replies by: Bonnie Lea

Dancing skeleton puppet

http://www.youtube.com/watch?v=1WpD7i4RxnY

 

 

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

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Kimmer's picture
Replies 2
Last reply 7/31/2010 - 8:59am
Replies by: Kimmer, jag

Hey John,

I just read your profile.  I really didn't know that you have been through much.  Sure glad you are here!

My son recently took a bad fall at work and has suffered his second subdural hematoma.  Luckly this time did not require surgery, but his brain injury is more severe; cumualtive damage to left frontal lobe.  We are happily getting him back up to speed without so much thrapy this time and it looks like he will be able to return to his normal life. 

He was originally give Dilantin for the first head trauma.  That was 10 years ago for the subdural hematoma which was evacuated; craniotomy, coma, whole 9 yards; he took the Dilantin with no ill effects for 4 years and was given the green light to discontinue it..  His latest anti-seizure med was Keppra.  He kind of languished for 8 days making no real progress cognitively even though the CT scans showed that the trauma was resolving.  No EEG or MRI was ordered.  I asked for them to put him on Dilantin from the beginning because I knew that he had no problems with it before, but what do I know?  They liked Keppra better, no blood serum levels to check, less bad for the liver, etc.

At day 9 after the injury, he became very disoriented, could not follow simple commands, and was speaking gibberish (aphasia).  It was horrible.  Neurosurgery had been following his case and they were wringing their hands, psychiatry requested an EEG, neurosurgery said NOPE, so Psychiatry called in Neurology who said that he was having non-convulsive seizures and ordered an EEG.  The EEG confirmed this and low and behold he was given IV Dilantin and a bunch of  IV B vitamins (Rally Pack).  He was coherent but sleepy in 4 hours. 

Either he is in the 1% of people who have severe adverse reactions to Keppra or it did not control the seizure activity.  (I still question why an EEG wasn't done as soon as possible.)  I noticed in your PatNet that your seizures became worse on Keppra.  Are you still taking it?  Do you have any 'insider info' about the medication.  The folks at the hospital were a little mute about it...I guess I had pitched a bit of a fit early on about the Dilantin.

I would appreciate opinions or findings on this medication.

Many thanks, K.

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TinaR's picture
Replies 21
Last reply 7/31/2010 - 7:14pm
Replies by: bcl, jag, TinaR, Anonymous
 
 
I can't handle these changes in  my life...I come to the board and it's like operating inside a kaleidoscope.  I feel so shrieky, nasty and awful about this...I will stop until I can control myself.

 

 

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Kimmer's picture
Replies 1
Last reply 7/29/2010 - 9:12pm
Replies by: Carver

Testing a link for photos....

 

http://i316.photobucket.com/albums/mm352/floridogz/P3010105.jpg

Full sun Beagledogz.  I tried sunscreen on their noses, but they just lick it off.

Y'all take good care, K.

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jag's picture
Replies 2
Last reply 7/30/2010 - 3:59pm
Replies by: Bonnie Lea, Yawn

 Sorry, somebody had to do it.

John   

Warm fuzzys, hearts and smiley faces to everyone.  The new board is like heaven. 

Insert Generic Inspirational Motto Here

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Bonnie Lea's picture
Replies 6
Last reply 7/29/2010 - 9:03pm
Replies by: Kimmer, jag, Anonymous, Bonnie Lea
Anonymous's picture
Replies 7
Last reply 8/1/2010 - 2:57pm
Replies by: DonW, Anonymous, Carver
Yawn's picture
Replies 21
Last reply 8/1/2010 - 12:01am
Replies by: Nad T, Jerry from Cape Cod, Anonymous, Carver, jag, Yawn, Fountainhead

n/t

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n/t

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Carver's picture
Replies 1
Last reply 7/29/2010 - 3:03pm
Replies by: Bonnie Lea

Hi Cyn,

If I were you I would let the MRF know about the Cyn issue. I saw your post to Bonnie. I'm starting a new thread because I think this may be an issue for others. Maybe you should put a comment under one of the MRF moderator post or email direct or there is also a feedback link. The reason I say that is it's possible if you had a patnet, you are the other Cyn and your patnet didn't get synched up with the new format. By that I mean when you tried to register there was a glitch and the patnet one you had kept you from registering with your name. I know I'm not making sense but I do think that it's possible you are both Cyn's. There have been responses about the issue of the patnet and profile synching up for some. Mine did work, my old patnet is now linked to Carver and is my profile but it didn't work out for some and they (MRF) will fix that. Hmmmm I checked (did a profile search) and there are 3 Cyn's. There is a stage IV Cyn who joined in 1998, a stage 1 Cyn13 who joined in 2002, a stage 2 CynD who joined in 2007 but the join date is automatically generated from the patnet and mine said 2007 although I joined in 2005. I think mine could have something to do with my changing patnet name from my original CS to Carver after a year or so. I feel like you had a patnet but I don't see it with your new name so you will probably have to synch that up (get the MRF to). Cheers, Carver PS I hope you're having a blast sailing. I'm jelous! I used to love to sail and had a boat but don't anymore.

"A closed mind is a wonderful thing to lose"

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Bonnie Lea's picture
Replies 2
Last reply 7/29/2010 - 6:33pm
Replies by: Bonnie Lea, Carver

due to things beyond my control..... seems I am too high a risk for new chest things.  ah well I am still me, although more and more like that turkey carcass left on the counter at Christmas Time after everyone has had their way with it.  hmmm.  Doctor feels we have been soooo lucky all these years what with melanoma, resections of things, and earlids and breast cancer, and shunts and stuff that it is like playing roulette and the pesky shunt tube is all the way to the bottom of me abdomen.  

lets hope the CT scan of my brain shows that I have not at least scrambled that.....

Just Keep on Hanging In

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Bonnie Lea's picture
Replies 7
Last reply 7/29/2010 - 1:56pm
Replies by: Anonymous, KyCyn, Carver, Bonnie Lea, Kimmer

Is anyone else out there?  or where did we all go?  I am going to at least  try to see how this all goes.  Afore I pass zee judgement.  Yesterday I went to the nuerologist....I confessed (like to a Saint)  and mentioned I had done a face plant onto our deck mid june and had a black eye and protruding eyebrow bone thing, but did not seek medical aid.  (I know I know)  way too embarassed. but with a shunt I should have known better.  He scheduled me for a CT scan (takes a long time remember?)  well  last night the hobbithall phoned, and I am going in TODAY at 4:30 for said scan of brain  (shunt and checking for subdural heomatoma or some such nonsense!  I promised from now on I would be a good Bonnie Lea.  HMMMM  I also have an appt to see my fav PS regarding the horrific scarring from the boobectomies and talk about possible what to do about the keloid that are bigger than your Mount McKinley!

 

what a busy week since coming home from my camp-a-thon. 

Just Keep on Hanging In

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