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08/18/2005 17:43
Reiner Bnot registered
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08/18/2005 17:43
Reiner Bnot registered
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Radiotherapy
After two surgeries on my right hand I wanted to avoid a third one (understandably). A new nodule started growing quickly on my pinky finger after the last surgery and I decided to try radiotherapy.
I got the dose that is described here on the Dupuytren web site. The outcome was surprisingly good: the already well visibly nodule disappeared completely and so did several small, tangible nodules for example on my ring finger. The side effect was minor: my finger felt inflamed for a few days and the skin peeled off a little. Both effects were gone after a week.
Thank you for telling me about the radiotherapy! Keep up your good work!
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09/08/2005 10:38
nigelscott7 
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09/08/2005 10:38
nigelscott7
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Why No Repy
Why are there so few comments on this message board about Radiotherapy for early-stage Dupuytren's? I have this in my left hand and was excited to read about the possibility of radio-therapy but there seems so little information.
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10/04/2005 06:23
wach  Administrator
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10/04/2005 06:23
wach Administrator
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Info on radiation therapy
Hello Nigel,
what information are you looking for beyond what we offer on our web site? We will be most happy to provide it!
We, too, welcome more posts on this forum. Actually we are getting some info directly via e-mail (obviously more convenient for some) and already considered posting this info ourselves in this forum. We also merge this information into our web site if it is of general interest, e.g. addresses of hospitals with which patients had good experience.
Wolfgang
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11/02/2006 14:08
Issleib 
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11/02/2006 14:08
Issleib
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Radiotherapy
I"ve writen this in another forum.
I'm a 58 year old woman in the US. I e-mailed a Radiation Oncologist I know slightly and asked about radiation. He agreed it was an option and referred me to some one near my home. I have had excellent response wit the nodules gone in my left hand andthe larger ones in my right hand greatly reduced in size. I have a follow up visit in Dec. and will ask then about my feet. I am the first one they have treated for this.
They used an instrument that is designed for treating superficial lesions like scars (keloid) and skin cancer.
Most teaching hospitals have physician directories. I would check them and look for radiation oncologists that work with keloid formation and write them. Enclose copies of the literature that's available. Both of the oncologists I spoke to knew exactly what I was talking about but not all necessarly will. Don't be afraid to write physicians that are aways away from you they may be able to refer you to someone closer to home, thats what happenend for me.
I had very little side effects. Both hand got red about 2 weeks after they were finished. The right more than the left for some reason. And I had some minimal skin peeling. Again Right more than left. No pain or tendernes. And I never had any loss of function.
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11/03/2006 07:20
Nigel
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11/03/2006 07:20
Nigel
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re: radiotherapy
Hi Issleib
I've now been to Essen, Germany and had wonderful treatment by Prof Seegenschmidt. My nodules have shrunk and cords gone really soft. I am very happy with the results and go back to Germany in January 2007 for my first yearly checkup. I've not written much on the DP board recently - I'm waiting until after my year checkup.
Glad the treatment worked for you too!
Nigel
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11/04/2006 19:31
FrederikMnot registered
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11/04/2006 19:31
FrederikMnot registered
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Thanks al lot for sharing your experiences.
I’ve got a nodule in the middle of my right hand, which is growing since a year. Recently an orthopedist took a piece out of it to research what it is: it is Dupuytren.
As i am young (21) and the disease is in the early stage i think (hope) radiotherapie is some kind of solution for me.
I live in Belgium, so it’s not really far away for me.
But i still have some questions which are important to me ...
What does it cost? How long is the therapie? Do you have to stay there for a while?
I’ve got now a 2cm long skinmark because of a small operation/punction (from a mont ago), in the middle of the nodule .. can that be a problem for radiotherapie?
And some last question ... How come that this therapie is only aviable in Germany and some places in America, if it works so well?
Belgium is famous for its exellent medical institutions ... but nowwhere here you find the radiotherapie treatment ... ?
thanks for the help
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11/05/2006 09:03
wach Administrator
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11/05/2006 09:03
wach Administrator
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radiotherapy Q&A
Hi Frederik,
many questions, I will try to answer at least some of them ...
"As i am young (21) and the disease is in the early stage i think (hope) radiotherapie is some kind of solution for me." -- Radiotherapy always includes a risk of cancer. This risk is very small but it is a little higher if you are younger (essentially because you live longer which is good news). You and your doctor should consider that risk (and you might also read what is written and cited on www.dupuytren-online.info with respect to that risk) before you decide for or against such a therapy.
"What does it cost? How long is the therapie? Do you have to stay there for a while?" -- The cost will depend on the hospital, I guess, the range probably somewhere between 500 and 1000 EUR. In Germany it is typically covered fully by health insurance. - The therapy is 5 days treatment (each treatment just for a few minutes), a 6 - 8 weeks brack, and then another five days. You probably wouldn't want to travel to Germany and back each day.
"I’ve got now a 2cm long skinmark because of a small operation/punction (from a mont ago), in the middle of the nodule .. can that be a problem for radiotherapie?" -- Only the doctor can tell but I wouldn't think so. Radiotherapy is also used to reduce scarring.
"How come that this therapie is only aviable in Germany and some places in America, if it works so well?
Belgium is famous for its exellent medical institutions ... but nowwhere here you find the radiotherapie treatment ... ?" -- good question. Maybe it does exist in Belgium, too. You might inquire e.g. at university or other research hospitals. For normal hospitals it is sometimes not profitable enough, too few patients and too cheap. But information flow is also important, in Germany it is only easy to find radiotherapy because of this web site ... Radiotherapy is also often (and wrongly) considered as inefficient. I guess this is due to early research where it was not recognized that the effect is very good in the infant stage and small in a late stage. People probably compared it to surgery which is usually apllied very late.
Wolfgang
Quote:
As i am young (21) and the disease is in the early stage i think (hope) radiotherapie is some kind of solution for me.
I live in Belgium, so it’s not really far away for me. ...
What does it cost? How long is the therapie? Do you have to stay there for a while?
I’ve got now a 2cm long skinmark because of a small operation/punction (from a mont ago), in the middle of the nodule .. can that be a problem for radiotherapie?
And some last question ... How come that this therapie is only aviable in Germany and some places in America, if it works so well?
Belgium is famous for its exellent medical institutions ... but nowwhere here you find the radiotherapie treatment ... ?
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11/08/2006 21:10
FrederikMnot registered
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11/08/2006 21:10
FrederikMnot registered
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Re: Radiotherapy
Sorry but i posted something on this forum here yesterday, and some other person too. And now these posts are gone ...?
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11/09/2006 05:44
wach Administrator
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11/09/2006 05:44
wach Administrator
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Missing your post?
Frederik, this forum has been moved onto a new server. During that move the old forum, unfortunately, had not been disabled and you had still posted on the old forum. Would you mind posting it again? I can't do that for you (for good reason ...). The fact that your post got lost has nothing to do with censoring, just human error. We are very sorry about that!
Wolfgang
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Sorry but i posted something on this forum here yesterday, and some other person too. And now these posts are gone ...?
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11/09/2006 13:08
Issleib
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11/09/2006 13:08
Issleib
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Re: Radiotherapy
I was deleted by accident so I'll try again.
I am every doctors worst nightmare as a patient. I'm another physician with acess to 4 or 5 medical search engins and the internet. I was told by the surgeon who made my diagnosis (although not quite so bluntly) to wait until my hands were nonfunctional and my feet hurt to much to walk on and then have surgery. 4 separate surgerys with weeks off work for each. Before I found the Dupuytren"s forms I had found the literature in the medical search engins. Anyone can get into Pub-Med or some of the other public aces sites but others like MD Consult require a subscription. I have them through the hospital I work at.
Computer medical search engins have radically changed medicines ability to resaerch unfamiliar topics. None of the radiation oncologists I spoke to had actually done this before even though they knew about it. noone of my physician frinds at work had ever heard of it. Some had never heard of Dupuytren's. My internist didn't recognize it. Dupuytren's is much les common here. In the doctor's dinning room only one doc had seen a case.
Not all older physicians have embraced the information age. Print the literature out and send copies to your physicians. My internist was no help at all. And my surgeon was totaly opposed to radiation but I persisted until I found help and have ha excellent results.
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