Comments for Castleman's Blog http://castlemans.org/blog The premier place on the web to discuss Castleman's disease Mon, 22 Feb 2010 21:48:30 +0000 http://wordpress.org/?v=2.9 hourly 1 Comment on First Time Castlemans Disease Patient Inquiries by Jim http://castlemans.org/blog/?p=16&cpage=1#comment-14615 Jim Mon, 22 Feb 2010 21:48:30 +0000 http://castlemans.org/blog/?p=16#comment-14615 REPLY FROM DR GUIDO TRICOT (University of Utah) Those are most likely not related, although it can not be completely excluded. Guido Tricot, MD Utah Blood and Marrow Transplant and Myeloma Program University of Utah School of Medicine 30 North 1900 East, Room 5C402 Salt Lake City, Utah 84132 (801) 585-3229 Fax: (801) 585-3432 guido.tricot@hsc.utah.edu REPLY FROM DR GUIDO TRICOT (University of Utah)

Those are most likely not related, although it can not be completely excluded.

Guido Tricot, MD
Utah Blood and Marrow Transplant and Myeloma Program
University of Utah School of Medicine
30 North 1900 East, Room 5C402
Salt Lake City, Utah 84132
(801) 585-3229
Fax: (801) 585-3432
guido.tricot@hsc.utah.edu

]]> Comment on First Time Castlemans Disease Patient Inquiries by Jim http://castlemans.org/blog/?p=16&cpage=1#comment-14614 Jim Mon, 22 Feb 2010 20:25:40 +0000 http://castlemans.org/blog/?p=16#comment-14614 Wanda, I havesubmitted this to our medical staff and will post thier resonse here. Regards, JIM, ICDO ED Wanda, I havesubmitted this to our medical staff and will post thier resonse here.

Regards,

JIM, ICDO ED

]]> Comment on Welcome to the NEW CD Dialogue by Jim http://castlemans.org/blog/?p=18&cpage=1#comment-14613 Jim Mon, 22 Feb 2010 20:24:42 +0000 http://castlemans.org/blog/?p=18#comment-14613 Thank you. Jim Johnston, ICDO ED Thank you.

Jim Johnston, ICDO ED

]]> Comment on Clinical Trials for Castlemans Disease and associated disorders by Christina Raab Ardon http://castlemans.org/blog/?p=13&cpage=1#comment-14423 Christina Raab Ardon Fri, 12 Feb 2010 21:53:10 +0000 http://castlemans.org/blog/?p=13#comment-14423 I will try to make this short. My father was diagnosed as having Castleman's in August through the VA. As of yesterday the VA told my father there is nothing further they can do for him, he is a 60 yr Vietnam Vetren that was exposed to Agent Orange. Is there anything we can do, anywhere we can seek treatment? The VA has perscribed pain killers to manage his pain and now another antibotic. Every lymphnod is swollen and greatly enlarged. My father also has Type 2 diabetes. They say they do not have the resources to help. Please can you offer us any advice. We are located in the Dayton, OH area. I will try to make this short. My father was diagnosed as having Castleman’s in
August through the VA. As of yesterday the VA told my father there is nothing
further they can do for him, he is a 60 yr Vietnam Vetren that was exposed to
Agent Orange. Is there anything we can do, anywhere we can seek treatment? The
VA has perscribed pain killers to manage his pain and now another antibotic.
Every lymphnod is swollen and greatly enlarged. My father also has Type 2 diabetes. They say they do not have the
resources to help. Please can you offer us any advice. We are located in the
Dayton, OH area.

]]> Comment on Physician Inquiries by Eteriakeemi http://castlemans.org/blog/?p=14&cpage=1#comment-14297 Eteriakeemi Sat, 06 Feb 2010 05:25:26 +0000 http://castlemans.org/blog/?p=14#comment-14297 I many time visited this site and here something is constant new. I will come once again I many time visited this site and here something is constant new. I will come once again

]]> Comment on Treatment Plan Inquiries for Castlemans Disease; Radiation, Surgery, and Drug Intervention by Elizabeth http://castlemans.org/blog/?p=15&cpage=1#comment-14161 Elizabeth Fri, 29 Jan 2010 20:10:25 +0000 http://castlemans.org/blog/?p=15#comment-14161 Hi Jim, After reading some of your posts I see you were diagnosed with Unicentric CD and that it was in your chest is that correct? Well, I had a CT done for something else and they stumbled upon a left sided anterior mediastinal mass that they were convinced was lymphoma. Once the surgical biopsy was done it proved to be unknown pathology but it did have features of CD. I went on to have a PET scan and full body CT to be sure there were no other masses and there weren't. They don't have a 100% diagnosis of CD as they said they would have to take it out to do that but they worry that the area of where the mass is (basically ontop of my heart) that it may be too risky to take out. I ended up having phrenic nerve and left diaphragm damage from the surgery and have to follow up with that issue in a few weeks. It is terrible mostly when I fly or when I walk or excercise too much. Sometimes it can be painful just to sit but laying down is the worst. As far as the treatment of the mass goes, I have to wait 3 months to see if it grows. My Dr. did say that possibly low dose radiation may be a good route to take but will determine that once my three months is up and I get another CT. My question to you is - is this similiar to your experience and did they end up being able to take it out completely and where was yours located or did you end up having to do radiation? Thank you for your advice! Hi Jim,

After reading some of your posts I see you were diagnosed with Unicentric CD and that it was in your chest is that correct? Well, I had a CT done for something else and they stumbled upon a left sided anterior mediastinal mass that they were convinced was lymphoma. Once the surgical biopsy was done it proved to be unknown pathology but it did have features of CD. I went on to have a PET scan and full body CT to be sure there were no other masses and there weren’t. They don’t have a 100% diagnosis of CD as they said they would have to take it out to do that but they worry that the area of where the mass is (basically ontop of my heart) that it may be too risky to take out. I ended up having phrenic nerve and left diaphragm damage from the surgery and have to follow up with that issue in a few weeks. It is terrible mostly when I fly or when I walk or excercise too much. Sometimes it can be painful just to sit but laying down is the worst. As far as the treatment of the mass goes, I have to wait 3 months to see if it grows. My Dr. did say that possibly low dose radiation may be a good route to take but will determine that once my three months is up and I get another CT. My question to you is – is this similiar to your experience and did they end up being able to take it out completely and where was yours located or did you end up having to do radiation?

Thank you for your advice!

]]> Comment on First Time Castlemans Disease Patient Inquiries by Wanda http://castlemans.org/blog/?p=16&cpage=1#comment-14114 Wanda Wed, 27 Jan 2010 06:33:45 +0000 http://castlemans.org/blog/?p=16#comment-14114 I was diagnosed with Castlemans 3 years ago. My mother died from Wegners Disease. Both are immune disorders. Are these related at all?Does this run in families and is it something my children should watch out for? I was diagnosed with Castlemans 3 years ago. My mother died from Wegners Disease. Both are immune disorders. Are these related at all?Does this run in families and is it something my children should watch out for?

]]> Comment on Welcome to the NEW CD Dialogue by Medical Zine http://castlemans.org/blog/?p=18&cpage=1#comment-13927 Medical Zine Mon, 11 Jan 2010 09:00:18 +0000 http://castlemans.org/blog/?p=18#comment-13927 I’ve been reading along for a while now. I just wanted to drop you a comment to say keep up the good work. I’ve been reading along for a while now. I just wanted to drop you a comment to say keep up the good work.

]]> Comment on Treatment Plan Inquiries for Castlemans Disease; Radiation, Surgery, and Drug Intervention by Jim http://castlemans.org/blog/?p=15&cpage=1#comment-13619 Jim Mon, 21 Dec 2009 23:59:10 +0000 http://castlemans.org/blog/?p=15#comment-13619 Michelle, RESPONSE FROM DR FRITS VAN RHEE: He should come and see me. 6-monthly rituximab worries me in terms of keeping tumor the same in size. There is also the risk of transformation to lymphoma over time. He should come and see me to see whether we can shrink his disease and make it operable. Also if has any symptoms then he might benefit from antiIL6 ab therapy Dr. Frits van Rhee MD PhD MRCP(UK) FRCPath Professor of Medicine Director of Clinical Research Myeloma Institute for Research and Therapy University of Arkansas for Medical Sciences 4301 West Markham, Mail slot 816 Little Rock AR 72205 cell: 501-8047020 office: 501-5266990 ext 2425 secretary: 501-5266990 ext 2467 fax: 501-5262273 www.myeloma.uams.edu Michelle,

RESPONSE FROM DR FRITS VAN RHEE:
He should come and see me. 6-monthly rituximab worries me in terms of keeping tumor the same in size. There is also the risk of transformation to lymphoma over time. He should come and see me to see whether we can shrink his disease and make it operable. Also if has any symptoms then he might benefit from antiIL6 ab therapy

Dr. Frits van Rhee MD PhD MRCP(UK) FRCPath
Professor of Medicine
Director of Clinical Research
Myeloma Institute for Research and Therapy
University of Arkansas for Medical Sciences
4301 West Markham, Mail slot 816
Little Rock AR 72205

cell: 501-8047020
office: 501-5266990 ext 2425
secretary: 501-5266990 ext 2467
fax: 501-5262273
http://www.myeloma.uams.edu

]]> Comment on First Time Castlemans Disease Patient Inquiries by Jim http://castlemans.org/blog/?p=16&cpage=1#comment-13618 Jim Mon, 21 Dec 2009 23:55:54 +0000 http://castlemans.org/blog/?p=16#comment-13618 RESPONSE FROM DR FRITS VAN RHEE (UAMS): Would suggest that he needs a lymphnode biopsy. If it is CD he will be closest to me and he can come and see me. Dr. Frits van Rhee MD PhD MRCP(UK) FRCPath Professor of Medicine Director of Clinical Research Myeloma Institute for Research and Therapy University of Arkansas for Medical Sciences 4301 West Markham, Mail slot 816 Little Rock AR 72205 cell: 501-8047020 office: 501-5266990 ext 2425 secretary: 501-5266990 ext 2467 fax: 501-5262273 www.myeloma.uams.edu RESPONSE FROM DR FRITS VAN RHEE (UAMS):

Would suggest that he needs a lymphnode biopsy. If it is CD he will be closest to me and he can come and see me.

Dr. Frits van Rhee MD PhD MRCP(UK) FRCPath
Professor of Medicine
Director of Clinical Research
Myeloma Institute for Research and Therapy

University of Arkansas for Medical Sciences
4301 West Markham, Mail slot 816
Little Rock AR 72205

cell: 501-8047020
office: 501-5266990 ext 2425
secretary: 501-5266990 ext 2467
fax: 501-5262273

http://www.myeloma.uams.edu

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