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

Shane good luck.

Here's a link to JHU. That should be your first choice.
Many friends and family of mine have either been there for problems have been cured when no one else could, and some work there or schooled at JHU.

Good luck, or should we actually say instead get WELL

http://vasculitis.med.jhu.edu/typesof/wegeners.html

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

Call THEM ASAP...

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

Thanks Mike. :cool:

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

Shane -

I don't know anything about that disease but I will share with you that I was diagnosed with very aggressive cancer three years ago. I had several surgeries and procedures and have now several years cancer - free. Hang in there buddy, never give up! Maintaining a postive attitude is huge. I can also tell you that I found the caring and support from my friends and family was absolutely humbling. When you hit rough times as you now have, you will experience many heartwarming expressions of support. In my case it ran the gauntlet of friends rallying around my bedside, people coming to my home to feed me, to my little neice carefully leaning over me so as not to disturb all of the tubes coming out of me and giving me a peck on the cheek (the last one still gets to me when I think of it).

You will be in my thoughts and prayers.

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

ttt

Anyone have leads for Shane?

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

Yea it's in my post JHU is the best.....

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

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.

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

If you can swing it - JOHNS HOPKINS . . . especially since you are young, vital, and have the FIGHT that healthcare people love. They will break their backs for someone who's willing to fight. As everyone on this thread has mentioned POSITIVE POSITIVE POSITIVE.
FIGHT FIGHT and MORE FIGHT. . . .

Yeah Man . . . set the bar for all the others. You can, and WILL prevail.
Godspeed.

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

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

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

Shane - Wish I could help more, but you'll be in our thoughts and prayers. Sounds encouraging at this point, though.