new from Ontario, Canada

[goldylace]

HI everyone--my brother in law has wegener and I'm on here seeing if anyone knows of any specialists in Ontario or close to us. We don't live to far from Toronto...but are willing to travel for help! He has had WG for many years, although took a long time to be diagnosed. He just came off a chemo treatment since his lungs are deteriorating rapidly, but it didn't seem to help too much. He is only 35.
So any suggestions regarding specialists is greatly appreciated! thanks, Kate

[JanW]

There are specialists at Mount Sinai in Toronto.

Have you been to Vasculitis Foundation Canada's website: Welcome to the Vasculitis Foundation Home Page - Vasculitis.ca (http://www.vasculitis.ca?) Several of their members were at the recent Vasculitis Foundation's Patient Symposium in Long Beach, CA, including some from the Toronto suburbs, and several from PEI and Calgary. The website looks pretty robust so I am sure you can find some answers there. The experts at the symposium said that WG research is currently being done at Mount Sinai and a hospital in Hamilton, ONT (sorry, didn't catch the name -- I'm not even sure the presenter said it -- but it's likely one of the larger teaching hospitals.

Please keep coming back here too -- we have several Canadian members here as well as wonderful members who can help answer any questions. And please encourage your brother to come here too when you are able. This is a very active board and I am sure you will soon see many welcomes!

What chemo did your brother receive -- I'm assuming cytoxin? He should know that doctors are having much success with rituximab in patients with recurring disease.

[Ashley]

I live just outside Toronto and see Dr.Carette out of Mount Sinai Hospital in Toronto. It's about 1 hour from where I live but completely worth the travel. He is an amazing doctor and he sees tons of wegeners patients. He has been my doctor for the last eight years (I was at the hospital for sick kids before that) and I have nothing but wonderful things to say about him and his staff. I have also been participating in the VCRC study through him for the past few years. I truly think he is the best of the best in our area!

If you would like his contact info or have any other questions please let me know how I can help.

[Sangye]

Goldylace, welcome to the group. I'm glad you found us! I hope you'll take Ashley up on her offer. Please get your brother to a Wegs specialist asap. With active Wegs, you can't lose any time. Call tomorrow.

[elephant]

Hi Glodylace and welcome. We are here to help and give you support.

[goldylace]

Thanks so much for the info!! I am not sure what the chemo drug was, only that it was expensive and he had it 4 different times...I will for sure pass Dr Carette' name over and look on the list a vasculitis doctors!! And I will try to get him on here: ) He is in Mississauga, so right near Toronto and Hamilton--good place to be! : )
Thanks again--imput it always welcomed here!!!! You guys are the experts! you know what it is like! Thanks, Katie

[JanW]

Sounds like he may have had rituximab, Katie, which has shown a lot of promise in recent studies.