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double dose
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11/05/2009 17:03
Issleib2

not registered

11/05/2009 17:03
Issleib2

not registered

Re: double dose

I told my brothers and my kids but my kids were young adults. They probably don't need to know before that anyway. I told them because I was lucky to be diagnosed early and had very succesful radiation over 3 years ago now. I told them so if they found nodules they would seek treatment early and understand that they had options to open surgery. They had no problems with the information.

11/06/2009 05:29
Born2run 
11/06/2009 05:29
Born2run 
Re: double dose

Building on these comments, I found Radiotherapy to be the best choice at least in my situation. My DC started in the right hand in 2004 at age 40. Thanks to the Biospecifics Forum I found Dr Eaton who released the contracture. It came back within one year. I had another release, but it came back again in one year. As luck would have it, both my feet also developed nodules that started to grow rapidly. I visited Dr. Denkler and he said (which I won’t forget) “you have bad disease. ” He did a third release on my ring and pinky fingers in 2007, which I followed up with Radiotherapy in Erlangen, Germany: 15 Gys over 5 days on a visibly impacted area plus a safety margin on both hands and both feet. The results were very positive with one round of treatment. I haven't noticed any re-growth in 2.5 years and the previous lumps and cords are smaller and seem dormant. The German doctors recommended a second round of treatment two months later but I was not able to return to Germany. I am still satisfied with the results with only one treatment. Recently, I noticed a small and painful nodule on one foot on an area outside the radiated zone. This time I went to Scripps in San Diego and had a similar round of Radiotherapy. The staff and Dr. Tripuraneni were very knowledgeable and I’m confident this will also stop the new growth. The thinking seems to be that if the area is not active, don’t treat it. If there is pain and observable growth, treat it as soon as possible.

Recently, my older sister developed DC in her finger and the contracture was quite aggressive. Immediately after Dr. Denkler released her contracture, she also underwent radiotherapy treatment at Scripps in San Diego (2 gys over 10 days). She's already amazed that her finger's straight again. She does have nodules on her feet but she said they have been there for several years and don’t bother her. Dr. T did not want to treat her feet based on her self-reporting a dormant state.

Dr. Denkler was optimistic on the injectable enzyme due out next year. However, from my understanding it's an option to NA vs. a cure for DC. Dr Denkler will be at the forefront of the use of the enzyme so let’s keep in touch with him. My opinion is for aggressive Dups, contracture release followed by radiotherapy is the best option …. given the right insurance. Besides the hoops I’ve had to jump through, but thanks to many of you and some good doctors, this disease has yet to impact my life in any significant way.

11/07/2009 21:11
flojo 
11/07/2009 21:11
flojo 
Re: double dose

You wrote, "My opinion is for aggressive Dups, contracture release followed by radiotherapy is the best option …. given the right insurance."
I agree. I also agree that it needs to be active, not dormant.

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understanding   penetrance   something   knowledgeable   Biospecifics   nodules   disease   Ledderhose   self-reporting   contracture   developed   treatment   Radiotherapy   aggressive   contraction   positive   periodically   dupuytren   children   approximately