Like Tree0Likes

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

Reply
Old 01-28-2005, 06:47 AM
  #1
Registered
Thread Starter
 
Shane's Avatar
 
Join Date: Oct 2000
Location: Niskayuna, NY
My Boats: 2009 FORMULA 292
Posts: 5,543
Default Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

I have learned that what is most likely the cause of the Ascending Aorta Disection that I had in October is an EXTREMELY RARE autoimmune disease called Wegener's Granulomatosis. It attacks vital organs and basically causes the body to fight itself in that area. I have one of the tell tale sign in that my nose is beginning to literally fall apart. I now have a hole between each side of my nose and it whistles when I breathe. If the disease is not put into remission my nose will collapse. Typically what happens if not caught early enough is a loss of hearing, eyesight, lung & kidney function and death. So far it looks like it may have been caught early and should be treatable with Chemotherapy and Steroids. I am hoping the pill form of the chemo will be sufficient. I just do not want to be giving myself shots everyday nor do I want to go to the hospital for I.V. treatments. I was wondering if anyone here has this disease or knows someone with it and if they may be able to provide some insight.

Yesterday I met someone near me with the disease and we went to dinner last night. I learned alot. I was wondering if any OSO members or their friends have it and what info you may have. This can be a very debilitating disease. However, if caught it can be very treatable but the negative is the chemo. Hopefully, the chemo will work to put the disease into remission in short order and I will not have to remain on it for an extended period. Any help would be greatly appreciated.

Thanks,

Shane

Last edited by Shane; 01-28-2005 at 06:50 AM.
Shane is offline  
Reply With Quote
Old 01-28-2005, 07:39 AM
  #2
Registered
 
excursion's Avatar
 
Join Date: Mar 2002
Location: Richmond Va
My Boats: 2006 Sonic 32 CC Sport
Posts: 2,274
Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Sorry to hear about your condition, can't help you but will send a prayer, Think positive and you will beat this.
excursion is offline  
Reply With Quote
Old 01-28-2005, 07:40 AM
  #3
Registered
 
GregP's Avatar
 
Join Date: Apr 2001
Location: Annapolis MD
My Boats: 1989 Scorpion 32 CC
Posts: 1,464
Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Yes, my father died from it a couple years ago. Here are some info links I still have on my computer. You can PM or e-mail me at [email protected] if you wish.

-Greg

http://www.niaid.nih.gov/factsheets/wegeners.htm
http://www.vh.org/adult/provider/int.../Wegeners.html

Last edited by GregP; 01-28-2005 at 07:55 AM.
GregP is offline  
Reply With Quote
Old 01-28-2005, 07:50 AM
  #4
Member #9
Charter Member
 
hp500efi's Avatar
 
Join Date: Oct 2000
Location: Pewaukee, WI
Posts: 4,269
Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Shane, sorry to hear about that. No I do not know of anyone however don't let the treatments scare you. Some people are worried about the treatments and there after affects but it sure beats not taking them. Stay positive!
__________________
Member of the Liquid Jungle
hp500efi is offline  
Reply With Quote
Old 01-28-2005, 08:35 AM
  #5
Platinum Member
Platinum Member
 
CigDaze's Avatar
 
Join Date: Jun 2001
Location: St. Petersburg, FL
My Boats: Cigarette 35 Cafe Racer
Posts: 21,346
Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Shane, sorry to hear that man. I've never heard of it before, but after reading the links Greg posted and knowing you found it early, it sounds like you'll be pullin' through just fine. Keep it positive.
CigDaze is offline  
Reply With Quote
Old 01-28-2005, 08:38 AM
  #6
Registered
 
Join Date: Oct 2000
Location: New York, NY - Manhattan BABY!
Posts: 1,296
Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Shane, we're both very sorry to hear that. Let us know if there is anything we can do.

Paul and Valentina
Miller is offline  
Reply With Quote
Old 01-28-2005, 08:39 AM
  #7
Charter Member #71
Charter Member
 
Join Date: Oct 2000
Location: Long Island,N.Y.
Posts: 1,365
Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Why is it the good guys get sick first ?

Shane - you know I'm in the medical field so if you're not getting the answers you need or there's anything I can do to help from the NYC provider community please get in touch with me.

Best of Luck...

- - Wes
WesSmith is offline  
Reply With Quote
Old 01-28-2005, 09:54 AM
  #8
Registered
 
DaveP's Avatar
 
Join Date: Oct 2000
Location: Toms River, NJ
My Boats: 2004 36 Concept
Posts: 2,740
Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Let's go on a Jack Daniels bender and we'll get you fixed right up there buddy!

Shane - keep the faith and never give up. FIGHT FIGHT FIGHT............and you will come out on top!

Good luck on the treatments and I hope to talk to you soon!

Dave
DaveP is offline  
Reply With Quote
Old 01-28-2005, 09:54 AM
  #9
Registered
 
Wellby's Avatar
 
Join Date: Jan 2002
Location: Cedar Creek Lake, Texas
My Boats: '85 Excalibur 27' Speedster
Posts: 526
Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Shane, That's what the doctors told me I had back in the mid 80's. It affected my right eye. One morning I woke up and my eye was swollen up... like I got in a fight. I went through 7 or so doctors, biopsys, chemo, steriods, IV injected antibiotics(that was like chemo). The last doctor was the one that finally diagnosed me with wegeners. This mess went on for about 2-3 years... finally one spring, I told the doctor to take my heart cathider out because it was getting time for boating and swimming. I have not been back since. I don't know if that's what I had or not... but that's what they told us. I'm doing great... other than my eye is swollen from the scare tissue where my body fought of whatever it was. Mark
Wellby is offline  
Reply With Quote
Old 01-28-2005, 10:37 AM
  #10
Registered
 
Tantrum's Avatar
 
Join Date: Oct 2000
Location: USR, NJ
My Boats: Stray Cat Statement Marine
Posts: 4,000
Default Re: Anyone here have or know someone with Wegener's Granulomatosis and have chemotherapy?

Shane
Stay as positive as you were the other night when we talked on the phone.
Christine and I are here for you with whatever you need.
Chris
Tantrum is offline  
Reply With Quote
Reply



Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On



All times are GMT -5. The time now is 05:59 PM.


Copyright 2011 OffShoreOnly. All rights reserved.