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Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

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Old 01-28-2005, 10:44 AM
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Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Well whatever the name that desease as one tough sledder that will beat the crap out of it.

Good Luck we"ll hope all goes well.
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Old 01-28-2005, 11:04 AM
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Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Thanks so much everybody! GregP, thank you for the links. Wellby, would you mind if I called you or would you be bale to call me. I would be happy to put it on my nickle. I would like to speak with someone who has been through it to get their perspective. Th lady I met last night seemed a bit melodramatic, so I would like to hear another's thoughts. You too GregP. Would you mind if asked you a little baout what your dad went through? Some things that concern me are how debilitating will these treatments be?

Tantrum,
Sorry about tomorrow night. I hope I can still make next weekend!
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Old 01-28-2005, 11:38 AM
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Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

SHANE,if your treatment scenario leads you to any of the NEW YORK CITY hospitals please let me know.I only live about 25 miles from NYC and I have room for you at my house and I'll will make sure that you will have a way in to the city.
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Old 01-28-2005, 12:02 PM
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Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Shane,
Stand tough brother, you WILL BEAT THIS!!
Dean and Robin
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Old 01-28-2005, 12:58 PM
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Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

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Originally Posted by sy goldberg
SHANE,if your treatment scenario leads you to any of the NEW YORK CITY hospitals please let me know.I only live about 25 miles from NYC and I have room for you at my house and I'll will make sure that you will have a way in to the city.
Sy,

Thanks so much. My parents still live in northern NJ so we are all set. However, your kindness is much appreciated!
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Old 01-28-2005, 12:59 PM
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Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

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Shane,
Stand tough brother, you WILL BEAT THIS!!
Dean and Robin
Mean Dean! They say Manatee's are a good for treatment!
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Old 01-28-2005, 01:19 PM
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Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Shane, Give me a shout. 903/880-6266

Mark
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Old 01-28-2005, 01:22 PM
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Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Thanks for the support GLH!

Wellby,

I will call you in a bit okay?
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Old 01-28-2005, 01:49 PM
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Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Shane,

Feel free to call me at home or work (I'll PM the numbers). I didn't want to post too much about my father as in his case they didn't diagnose it until it was effectively too late, so please don't take it as the only possible outcome (hearing the name again put quite a lump in my throat as well). Getting an early diagnosis puts you way ahead in the game.

My other general recommendation is to take it very seriously and find where is the absolute most advanced research center for Wegeners and go there. I'm not familiar with where Lake George is, but it doesn't sound like a major metro center.

Johns Hopkins is very near us. It is very advanced in many fields (was light years ahead of Albany NY for my father in laws blood platlet problem). If they have a good facility for Wegeners please feel free to stay at our house if you want to have them give a diagnosis.

-Greg
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Old 01-28-2005, 02:01 PM
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Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

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Originally Posted by GregP
Shane,

Feel free to call me at home or work (I'll PM the numbers). I didn't want to post too much about my father as in his case they didn't diagnose it until it was effectively too late, so please don't take it as the only possible outcome (hearing the name again put quite a lump in my throat as well). Getting an early diagnosis puts you way ahead in the game.

My other general recommendation is to take it very seriously and find where is the absolute most advanced research center for Wegeners and go there. I'm not familiar with where Lake George is, but it doesn't sound like a major metro center.

Johns Hopkins is very near us. It is very advanced in many fields (was light years ahead of Albany NY for my father in laws blood platlet problem). If they have a good facility for Wegeners please feel free to stay at our house if you want to have them give a diagnosis.

-Greg
WOW! Thanks so much Greg. We may take youup on it as I suspect the medical bills are going to begin to mount rather quickly. We actually are close to Albany, NY. THere is a doctor here that is supposed to be pretty good, but we were referred to a doctor more advanced in Boston. John's Hopkins certainly isn't all too far either. I will keep you posted. Thanks again.

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