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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Thank You for being here!
        
(Message started by: janet on May 10^th, 2004, 6:35pm)

Title: Thank You for being here!
Post by janet on May 10^th, 2004, 6:35pm

Hello all....I'm brand new to your wonderful support group....was in remission for nearly 18 years, then the clusters came back following chemo...already got some supportive responses from several of you about this...thank you so much. I'm amazed at how many of us there are - more amazed that NO ONE can seem to figure this horrible beast out....no one should be in this kind of pain these days. Blessings to you all, and thank you again. I'll check in frequently to see if I can be of help to anyone and for additional support. here's to pain free nights - and days! Janet

Title: Re: Thank You for being here!
Post by HypnoticFreddy on May 10^th, 2004, 8:00pm

Janet,

Welcome and sorry to hear about chemo as well. Double-whammy. I find it interesting to hear how CHs can go in remision for such long times ( 18 years). I have certainly read about people with similar long-term CH-remissions on ch.com over the years. But that is a LONG remission.

CHs are a terrible disease(cancer ceertainly is worse), and certainly more research needs to be done.

So far it appears that the hypothalmus portion of the brain plays a role. Wouldn't it be wonderful if they found a univeral cure!!!! My feeling is in many cases CHs are MANAGEBALE. Hopefully you can find some treatment that helps.

Kepp postivie.

-Scott

Title: Re: Thank You for being here!
Post by TxBasslady on May 10^th, 2004, 10:47pm

Welcome to the board, Janet

Sorry to hear that you have these dreadful ha's.

Hope you've read up on all the info. Sure helps to have it when you see the doc for meds.

Stay with us...let us know how you're doing.

PF vibes,

Jean