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radiation
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04/16/2008 19:05
Ivy 
04/16/2008 19:05
Ivy 

Re: radiation

Jennifer, I hope you are still monitering I am wondering how your radiation treatment worked for you. I was just diagnosed yesterday with Dupuytren and I too don't yet have any noticeable contractions yet I am early 50s and just found a small lump and the cord going down from my middle finger. So i was not even sure it was this until since my primary care doctor thought it was a Cyst. I was diagnosed yesterday by the specialist. My Doctor talked like nothing could be done until it was time for surgery. But I am hopeful about some of these early treatment options that I am reading about... I hate just waiting for the inevitable. I am not sure what direction I should take.. but I could do Germany. any idea of the cost since I am sure my insurace will not cover going to Germany for this.

04/16/2008 22:48
nmrsme 
04/16/2008 22:48
nmrsme 
Re: radiation

I had the radiation done earlier this year at St Vincents Hospital in NYC. The disease has not progressed since I have had it done however it did not shrink or make the main nodule any softer. I am hopeful that it has slowed the progression.

neil

04/17/2008 07:33
newman 
04/17/2008 07:33
newman 

Re: Radiotherapy Costs....

Hi Ivy- Australia Calling. Welcome to the forum.
I had RT on both hands and feet in Germany late 07 . (2sessions)(5X3GY) The cost of treatment 2000 Euros. If it is one hand i would count on 500 to 600 Euros. In Essen they helped with the names of hotels which work with the hospital and gave discounts to patients. I used the time to travel and enjoy myself having the treatment first thing . Regards.

04/17/2008 11:16
Ivy 
04/17/2008 11:16
Ivy 

Re: radiation

How long did it take? From what I am reading there are multiple treatments ...is it over days, a week a month or longer?

04/17/2008 11:21
Ivy 
04/17/2008 11:21
Ivy 

Re: radiation

Hum I am in the states, KC so 500 euros.. is about..humm exchange was..1.75 a year ago when we went to Italy, so now probably closer to, 2 so I could count on 1000 or more I guess. plus the cost of travel.. I heard some went to NY. I wonder if i just start calling all the cancer treatment centers in my city if I may hit on one that would be willing. Not sure how much experiance plays in the radiation doc part of this.

04/17/2008 13:13
newman 
04/17/2008 13:13
newman 

Re: Radiotherapy New York .

Australia Calling. Hi Ivy
Have you checked the Dupuytren Society web ' radiotherapy ' http://www.dupuytren-online.info There are two protocols used by Prof Seegenschmiedt in Germany. 7X3GY over 2 weeks (total 21 GY) or 5X3Gy in 1 week and repeated 3 months later. (total 30 GY)The process for the delivery is about 3 minutes. I received an email from a Society registered user 'Raynora' last August where he was treated 7X3Gy by his doctor in New York,after speaking to Dr.Cuttino who is on the Dupuytren Web. You could email Raynora for further details. (For information only) Click on' My Profile' at the top Open -Send an email and open' blue drop down' and scroll to member. Attach your email address for return mail. The email is sent via Dupuytren Society and is private. This may be of help . Regards from down under.

Edited at 04/18/08 02:29

04/21/2008 02:05
Ivy 
04/21/2008 02:05
Ivy 

Re: radiation

Thanks! I sent the email.... I have been reserching the NET till my eyeballs are dry trying to see anything that would help me make up my mind about the radiation route. I have not seen anything american on the con side except some vauge references to it not being effective. But I have not seen any thing on the pro-side either except on this site. but I am hopeful. I don't want to just sit on my hands (bad pun) and wait. I hear that it progresses slowly and it may be years before it really affects me. I am only in my early 50s though I dont' want to wait til I can't type anymore.

04/21/2008 07:20
Wolfgang

not registered

04/21/2008 07:20
Wolfgang

not registered

Re: radiation

Hi Ivy, just keep in mind that radiotherapy is one of several options. Kenalog injection may hold back the disease for a couple of years, NA can get a bent finger straight, and there is surgery as a possible last resort. So, in any case, you will be typing along for quite a while ...

Wolfgang

Quote:



Thanks! I sent the email.... I have been reserching the NET till my eyeballs are dry trying to see anything that would help me make up my mind about the radiation route. I have not seen anything american on the con side except some vauge references to it not being effective. But I have not seen any thing on the pro-side either except on this site. but I am hopeful. I don't want to just sit on my hands (bad pun) and wait. I hear that it progresses slowly and it may be years before it really affects me. I am only in my early 50s though I dont' want to wait til I can't type anymore.


05/02/2008 04:15
leagentilecn 
05/02/2008 04:15
leagentilecn 
Re: radiation

Hi,

This is the first time I'm posting and I have a question with Wolfgang in mind. I'm a classical "pianist-in-recovery" meaning that I'm working now towards regaining my performing skills after a 5 year hiatus, age 58, living in China with confirmed symptoms of Dupuytren's in both hands, but more prominently in the right. That sounds like a challenge, doesn't it? Well, life is full of them! Rather boring otherwise, I'd say.

Last summer I visited the Hand Center in Jupiter, FL, USA and spoke with both Dr. Zidel and Eaton. Dr. Zidel recommended a watchful waiting approach since my condition is in its early stages (how "early" I don't know) and to follow the progress of the clinical trials using collagenase to see how things develop as a potential therapy for a later stage, should it become necessary. He didn't mention radiation therapy, as I recall.

After reading several postings, radiation therapy sounds like it could be a good option for me. Wolfgang mentioned that he had it 25 years ago. I'm curious to know where and under what conditions. Whobesides the ones in Essen, Germany, are the most experienced doctors with significant specialization and experience using it now and where are they?

Any other words of wisdom, comfort or advice would be appreciated.

Best,
Lea in China

05/02/2008 05:27
Wolfgang

not registered

05/02/2008 05:27
Wolfgang

not registered

Re: radiation

Hi Lea,

I was treated in a Munich clinic but they don't do it anymore (otherones in Munich do). That clinic re-organized their radiotherapy department and sold the x-ray equipment. Currently my guess would be that in Germany Essen has the most experience in treating Dupuytren and Ledderhose, but there is a long list of clinics (and I am sure it's not complete) on our German web site http://www.dupuytren-online.de/strahlent..._adressen.html.

Whether or not to treat your Dupuytren's really depends on how agressively it is growing. My mother is 86, has Dupuytren's and was never treated. It's still only a nodule that doesn't affect her really. If you still have small nodules but feel they are growing, radiotherapy might be a good option to postpone other treatments for a long period of time. My finger was radiated about 25 years ago and is still straight. When it started 5 years later on my other hand I didn't have radiotherapy because I hoped it might turn out stable anyway. It did not and I had to have surgery 5 years ago. I wasn't aware of NA at that time. I wish we had Dupuytren Society then ...

Wolfgang

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