| Radiotherapy |
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04/05/2007 14:03
Nigel 
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04/05/2007 14:03
Nigel
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Re: Radiotherapy
Hi Issleib
I will be visiting my cousin, who is a consultant in a UK hospital, in June. I will see if he could get someone at his hospital to trial this treatment. It doesn't seem fair that people who don't have access to the internet and this web site will probably never find out about this great treatment.
Nigel
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04/06/2007 12:26
Richard.H
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04/06/2007 12:26
Richard.H
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Re: Radiotherapy
Hi
I am 35, living in Scotland UK. I have been diagnosed with Dupuytrens Contracture. My doctors have seemed to know very little and advised waiting until contracture becomes limiting, when I could then have surgery. Having read this website I feel like I've been given very narrow advice and options. I have one nodule in the palm of my right hand. It's about 5mm wide with a slight thickening underneath it towards the palm. The nodule has appeared and grown in the last six months. I am interested in radiotherapy but can find no place in the UK as yet that offers this. I would be willing to travel to Germany if this is the best option and would value any advice on the best place to receive treatment, and any other related information. It feels like there is a window before the cords start to grow which offers the most hopeful treatment - I don't want to miss this.
Thanks for any help, Richard.
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04/06/2007 15:30
bstenman 
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04/06/2007 15:30
bstenman
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Re: Radiotherapy
Nigel and others,
I would appreciate information on where you stayed in Essen as I will be making two trips there from California in the next several months. The places I have found for lodging are outside of Essen and considerably more expensive than what you found.
With the 9 hour time zone difference my communications with the clinic have been limited to email which has been only moderately successful.
Thanks,
Bruce
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04/07/2007 20:17
TrevB
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04/07/2007 20:17
TrevB
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Re: Radiotherapy
Quote:
Hi
I am 35, living in Scotland UK. I have been diagnosed with Dupuytrens Contracture. My doctors have seemed to know very little and advised waiting until contracture becomes limiting, when I could then have surgery. Having read this website I feel like I've been given very narrow advice and options. I have one nodule in the palm of my right hand. It's about 5mm wide with a slight thickening underneath it towards the palm. The nodule has appeared and grown in the last six months. I am interested in radiotherapy but can find no place in the UK as yet that offers this. I would be willing to travel to Germany if this is the best option and would value any advice on the best place to receive treatment, and any other related information. It feels like there is a window before the cords start to grow which offers the most hopeful treatment - I don't want to miss this.
Thanks for any help, Richard.
I'm sure that Wolfgang will give you the info you require 
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04/08/2007 12:31
phil 
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04/08/2007 12:31
phil
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Re: Radiotherapy
On accommodation in Essen,the Radiotherapy Dept found me a room in their Hospital
first time round-but for my second visit this was full so they linked me up with a really good room(double) at The Bildungshotel-(educational accomodation) at 40-50 Euros a night.I`m sure if you contact Christiane Kerstan at the Dept again,she will help you out.If not-give me a shout and I`ll pass on the email link to you.Best of luck with the treatment and have a good time in Essen-Nigel and myself had a good time exploring the local German cities.
Phil
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04/08/2007 15:10
wach  Administrator
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04/08/2007 15:10
wach Administrator
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Re: Radiotherapy
Richard, most patients from UK went to Essen and all treated there seem to be satisfied with the staff and the results. Why don't you try it there? You find their address is on http://www.dupuytren-online.info/radiation_therapy.html . You might also inquire about a low dose treatment with 7x3 Gy. This would require only a single trip to Essen for 1.5 weeks.
Good luck!
Wolfgang
Quote:
Hi
I am 35, living in Scotland UK. I have been diagnosed with Dupuytrens Contracture. My doctors have seemed to know very little and advised waiting until contracture becomes limiting, when I could then have surgery. Having read this website I feel like I've been given very narrow advice and options. I have one nodule in the palm of my right hand. It's about 5mm wide with a slight thickening underneath it towards the palm. The nodule has appeared and grown in the last six months. I am interested in radiotherapy but can find no place in the UK as yet that offers this. I would be willing to travel to Germany if this is the best option and would value any advice on the best place to receive treatment, and any other related information. It feels like there is a window before the cords start to grow which offers the most hopeful treatment - I don't want to miss this.
Thanks for any help, Richard.
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04/08/2007 15:11
wach Administrator
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04/08/2007 15:11
wach Administrator
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Re: Radiotherapy
Jesus, you are putting me under stress!
Wolfgang
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I'm sure that Wolfgang will give you the info you require
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04/08/2007 18:58
TrevB
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04/08/2007 18:58
TrevB
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Re: Radiotherapy
Quote:
Jesus, you are putting me under stress!
Wolfgang
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I'm sure that Wolfgang will give you the info you require
I don't know but I know a man who does
What I don't get about Radiotherapy is the cancer risk? I thought they used it to kill cancer cells of sufferers so I'm confused by the risk of using it in this case. If I had a passport and didn't find getting around difficult due to disability then this would be a good option for my early stage Dups. However, cancer has been prevalent in my family and I'm wary about any treatment which could trigger it. I'm only 46
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04/08/2007 19:04
bstenman
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04/08/2007 19:04
bstenman
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Re: Radiotherapy
"Richard, most patients from UK went to Essen and all treated there seem to be satisfied with the staff and the results. Why don't you try it there? You find their address is on http://www.dupuytren-online.info/radiation_therapy.html . You might also inquire about a low dose treatment with 7x3 Gy. This would require only a single trip to Essen for 1.5 weeks."
Actually the 7 treatment schedule is done Monday, Wednesday, Friday, and repeated the next week and then the 7th treatment is on Monday the following week, so it takes 15 days in Essen at a bare minimum if you arrive the day of the first treatment and depart the day of the last treatment.
The extra spacing is to minimize side effects from the increased radiation dosage versus 15 Gy with a two month gap before the second set of treatments which provides an interval for your body to recover.
Bruce
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04/08/2007 21:09
Richard.H
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04/08/2007 21:09
Richard.H
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Re: Radiotherapy
Thanks everyone, I will try and get in contact. I guess they can send me details of the options and timings. I saw a hand specialist here in Scotland and he had never heard of radiotherapy. He was fairly dissmissive.
Thanks for making this info available - and it's good to hear about peoples actual experience and response to the treatment.
Richard
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