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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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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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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bcl's picture
Replies 2
Last reply 7/31/2010 - 7:03pm
Replies by: bcl, Carver

 

I loved this feature of the old board; it added clarity on the main board and humour OTB
Questions (related or otherwise) are often asked within a thread by patients, these can be overlooked if not for others changing the subject line to draw attention to the post. One thread could efficiently accommodate multiple concerns.
 It seems to me this was not a frivolous feature, but one that enhanced communication -a worthy goal on a cancer board.

 (Posting this here to avoid crowding the main board, but I see it primarily as a main board concern.)

 

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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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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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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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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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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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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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kwahlbin's picture
Replies 1
Last reply 7/29/2010 - 9:21pm
Replies by: Anonymous

The bulletin board has been updated with new a new look and additional functions. To learn how to use the bulletin board and the new features, please see the Bulletin Board FAQs.

If you have additional questions, please contact us using the contact form.

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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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Bonnie Lea's picture
Replies 6
Last reply 7/29/2010 - 9:03pm
Replies by: Kimmer, jag, Anonymous, Bonnie Lea
MarieM's picture
Replies 6
Last reply 7/29/2010 - 8:13pm
Replies by: jag, Kimmer, Bonnie Lea, yoop, Nad T, bcl

I know it has been long overdue for me to move on. But I will sooooo miss the many of you I've befriended over the years. I guess I will just have to wonder about you all......

So sad....

Marie

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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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n/t

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