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

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Old 02-03-2005, 11:06 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 fatdaddy
Shane, I've never met you but have enjoyed your many insightful posts. I followed your scare not too long ago and was quite relieved to know that you pulled through so well. I am truly sorry to hear this news but am quite sure from what I've seen from you and heard about you that you will overcome this hurdle too. My advice is to learn as much as possible about it and then pick the best treatment center. This advice comes from personal experience. On 9/11/01, I was told that my 2 1/2 yr. old son was moderately autistic, that my hopes should not be too high as he would probably need to be institutonalized at some point. I didn't believe, I informed myself and surrounded myself w/ the best therapists and today, his autism is nearly undetectable. I never considered myself too religious but in my time of crisis I was told that God only gives you as much as you can take. You can take this as you lead off an incredibly brave vibe. My thoughts are w/ you.

Thanks fatdaddy. I know what you mean. I have autistic nephew and my wife is a special ed teacher specializing in autism. Glad to hear your son is well!
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Old 02-03-2005, 11:07 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
I agree with e-motion, call JHU and schedule a visit, NOW!.

As I said earlier, my dad died from Wegeners about 4 years ago. He had always been very healthy, rairly was sick and almost never needed to go to a doctor. He had not seen the inside of a hospital since enlisting in WW II. His first symptoms appeared in mid August as a moderate cold. A couple weeks later it was bad enough to go to the doctor, who put him in the hospital believeing it was pnenumonia. They tried the usual things for pnenumonia for about 2 weeks with no progress. They finally did a lung biopsy and discovered it was Wegeners (attacking the lungs and liver in his case).

They began treatment and he improved markedly for about a week, then regressed. There was too much damage that had already occured prior to the diagnosis. He died the end of September, 6 weeks from the initial onset of symptoms.

From what I could learn at the time there seemed to be no clear understanding of what causes Wegeners, just a sudden gene flip and the body begins to fight itself. The treatment is anti-rejection theropy similar to organ transplants (at least in his case). I have always wondered if his Wegeners was a delayed reaction to radiation, as he was a witness to Operation Crossroads, the atom bomb testing at Bikini (somthing he had not even told my brother and I until just a couple months prior).

You have the will to fight, you have an early diagnosis, but you need to proceed QUICKLY as it can be a very fast reacting disease.

Gods Speed - Greg
Wow Greg! That is some story. What can I say? Do you have the name of any particular doctor in JHU?

Thanks,

Shane
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Old 02-03-2005, 11:08 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 - Wish I could help more, but you'll be in our thoughts and prayers. Sounds encouraging at this point, though.
Thanks Chuck. I hope you and the Admiral are both well. Hope to speak with you soon.

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Old 02-04-2005, 12:23 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 Shane
Do you have the name of any particular doctor in JHU?

Thanks,

Shane
No I don't know anyone in that field there, but e-motiondriver said he had some friends there that could probably dig up a name. I know some people their from my wife's surgery, will see if they might be able to get me one too.

If nothing else you can call the center and ask who you can get a consultation with.

http://vasculitis.med.jhu.edu/aboutus/aboutus.html


-Greg

Last edited by GregP; 02-04-2005 at 12:27 PM.
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