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Radiation Therapy
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08/21/2015 19:02
dpjcrfsh 
08/21/2015 19:02
dpjcrfsh 
Radiation Therapy

I just posted another introductory thread, but thought I'd make this one separate.

Could I assume that for someone with Dupuytren's at stage N and active, the International Dupuytren Society would recommend radiation therapy? I'm leaning towards this option at the moment. I'm also considering going Dr. Seegenschmiedt in Germany. I'm quite concerned about inexperience among American doctors. I live in Texas and one Doctor does RT in Austin, but I have no idea of his experience level.

08/21/2015 19:52
spanishbuddha 

Administrator

08/21/2015 19:52
spanishbuddha 

Administrator

Re: Radiation Therapy

dpjcrfsh:
I just posted another introductory thread, but thought I'd make this one separate.

Could I assume that for someone with Dupuytren's at stage N and active, the International Dupuytren Society would recommend radiation therapy? I'm leaning towards this option at the moment. I'm also considering going Dr. Seegenschmiedt in Germany. I'm quite concerned about inexperience among American doctors. I live in Texas and one Doctor does RT in Austin, but I have no idea of his experience level.
Welcome to the forum

I am not sure anyone from the IDS would go so far as to recommend RT, as that is a personal decision for you to make. RT is the only treatment to have evidence based reports of success in the realy stages, when there are active symptoms. There is an increasing knowledge base in the US, as seen on the FB DART group, but ProfS is the pioneer. He is also usually quite good at responding to email if you provide history, photos, relevant factors, symptoms.

I saw your other post about 'how aggressive"; I have never seen a measure for the rate of progression or aggressiveness. I think you said LD was diagnosed 8 years ago, and DD only recently, with no clear nodules, cords or signs of contracture. Hardly seems aggressive to me so far, subjectively, and many doctors suggest wait and see, which many of us pro-active types don't want to hear, but it's a valid suggestion for most, but not all.

I usually suggest turn that subjective measure into an objective one by keeping a log, with photos, including symptoms, that way when you go for a consultation you have factual evidence of rate of progression with signs of active symptoms.

On one of my face to face consultations with ProfS he turned me down for RT as I presented too early, despite myself being convinced my hand was imminently turning to a contracture. Two years later however with my log or record and further progression I had the treatment.

Best wishes SB

08/21/2015 20:01
dpjcrfsh 
08/21/2015 20:01
dpjcrfsh 
Re: Radiation Therapy

What were your original symptoms at that first meeting? How did your RT work? How long ago was it?

08/21/2015 20:42
spanishbuddha 

Administrator

08/21/2015 20:42
spanishbuddha 

Administrator

Re: Radiation Therapy

dpjcrfsh:
What were your original symptoms at that first meeting? How did your RT work? How long ago was it?
I had had nodules for a few years, slowly increasing, no cords, some tingles and aches. The Prof does physical check, and a weighted score health questionnaire. He thought RT would not be approprIate. Two years later I had a hard sore aggressive nodule appear within 6-8weeks, and early cords forming from the previous nodules. At that point I had RT. The cords remain, nodules too, but are quite dead and inactive. Full flexibility of the hand. As a piano player I am acutely aware of hand and finger function, and was over anxious (still am really).

The point being RT is essentially a one shot chance, and there is a point in the phase of collagen production when RT is effective, so the moment has to be chosen accordingly, not just because one has 'early symptoms', since for the majority early symptoms do not lead to contracture. For LD it's similar although there is almost never contracture, but conservative treatment helps many. If it does not and progresses leading to increasing difficulty walking, standing, etc, then RT may be advised.

Edited 08/21/15 23:44

08/21/2015 21:16
dpjcrfsh 
08/21/2015 21:16
dpjcrfsh 
Re: Radiation Therapy

Hurray for your results! I have the start of a cord. Do cords always lead to contracture if not treated?

How long ago was your treatment?

Edited 08/22/15 00:44

08/22/2015 06:26
spanishbuddha 

Administrator

08/22/2015 06:26
spanishbuddha 

Administrator

Re: Radiation Therapy

Cords do not always produce a contracture, but it will depend where they are and how quick the disease is progressing, having said that if you have cords forming look for the tell tale signs of the contracture starting, skin dimpling, needing to straighten fingers hand in morning or awareness of catching something because the hand is not extended.

The protocol used for RT in Germany is 5 x 3Gy, so that's 3Gy on 5 consecutive days, repeated 12-16 weeks later. Each shot takes about 1 minute. Treatment for one hand was four years ago.

Edited 08/22/15 09:29

08/22/2015 11:40
dpjcrfsh 
08/22/2015 11:40
dpjcrfsh 
Re: Radiation Therapy

I already got a reply from Dr. S. Anyone know if American insurance ever covers such treatments? That is medical treatments outside of the country?

08/22/2015 17:09
dpjcrfsh 
08/22/2015 17:09
dpjcrfsh 
Re: Radiation Therapy

I'm also curious if RT for Dupuytren's might have and affect on the immune system. I'd think the bones in the hands would not be major producers of white blood cells, but interested in people's thoughts.

08/23/2015 06:13
wach 

Administrator

08/23/2015 06:13
wach 

Administrator

Re: Radiation Therapy

Typically only very few and small bones of the hand are irradiated. I wouldn`t expect any effect on the immune system.

Wolfgang

dpjcrfsh:
I'm also curious if RT for Dupuytren's might have and affect on the immune system. I'd think the bones in the hands would not be major producers of white blood cells, but interested in people's thoughts.

08/26/2015 07:18
marge66 
08/26/2015 07:18
marge66 
Re: Radiation Therapy

I am also looking for information about RT in countries other than Germany. Does anyone have any feedback of RT carried out in England? There are some private clinics which will do RT but I can't find any reviews or follow up reports.

Edited 08/26/15 10:18

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