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Radiotherapy available in Boston
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03/29/2008 20:02
dandick 
03/29/2008 20:02
dandick 
Radiotherapy available in Boston

I have recently completed a course of radiotherapy for Dupuytren's at Massachusetts General Hospital in Boston, MA. Dr. Anthony Zietman, a radiation oncologist who otherwise treats prostate cancer, had attended several seminars by Dr. Seegenschmiedt and was thus knowledgeable about, and interested in, treating me as his first Dupuytren's case.

I have two palm and two finger nodules on my left hand, but no cord development, and thus was a good candidate for radiotherapy to arrest the disease. As you may be aware, radiotherapy is not as effective for later stages.

I received 7 treatments, one a day excluding weekends. Dr. Zietman followed a protocol described in Dr. Seegenschmiedt's 2001 study. The treatments seem to have arrested the growth of the nodules. I experienced no side effects. It was covered by my insurance, UnitedHealthcare.

Dr. Zietman's schedule is backed up for weeks, but you can call for an appointment at 617-643-1769.

Another radiation oncologist, Dr. Stuart Berman at Beth Israel Deaconess in Waltham, MA, just outside of Boston, also indicated to me an interest in, and a willingness to treat, Dupuytren's. He can be reached at 617-667-2345.

It took me weeks to locate Dr. Zietman and Dr. Berman, and I urge any one with early stage Dupuytren's to be persistent in locating a radiation oncologist if radiotherapy might be appropriate. I hope that radiotherapy can soon become readily available to anyone with early stage Dupuytren's.

Best of luck. I will try to respond to any questions.

Dan

03/30/2008 00:05
newman 
03/30/2008 00:05
newman 

Re: Radiotherapy available in Boston

Hi Australia Calling,
Like yourself I have a passion to extend the knowledge of treating Morbus Dupuytren with the use of Radiotherapy .I was treated by Prof Seegenschmiedt using the other protocol of 5 daily treatments of 3 GY and having another 5X3GY some 3 months later, as apposed to the other protocol of 7X3GY. I have mentioned to Oncologists here in Australia the recent published book by Seegenschmiedt and others "Radiotherapy for Non-Malignant Disorders" where the protocol is listed for the treatment of some 28 disorders including MD & ML and found that , they were so interested they purchased the book and will offer RT for MD. It would be great for you to see it these Doctors will List on the Dupuytren Society Web page for your Country men and women. All they need to do is email Wolfgang with their details and wish to be listed . Keep up the good work .
His email is w.wach _@_ dupuytren-online.de Regards.

Edited at 04/22/08 13:17

04/05/2008 08:12
WhiteMan 
04/05/2008 08:12
WhiteMan 
Re: Radiotherapy available in Boston

AS far as I understand the radiotherapy protocols from the Alfried Krupp Hospital
they advice two different radiation schedules:

1st Option: 5 x 3Gy within ONE week, then a BREAK of 3 months and then
followed by another 5 x 3Gy within ONE week (total dose 30Gy) ...
2nd Option 7 x 3Gy within TWO weeks, i.e. only 3 treatments per week,
e.g. Monday - Wednesday - Friday (each of the weeks) and the
last treatment on Monday in the 3rd week


I was treated with the second option and had very good success with this
radiation protocol on both of my hands; interestingly my disease started
AFTER my son experienced Morbus Ledderhose at an age of 9 years ...
He was first operated but developed a huge relapse after 3 months, so
that he was disabled, had pain and was unable to practice sports ...
After ONE course of radiation therapy at Alfried Krupp Krankenhaus in
Essen with 5 x 3Gy the disease stopped the nodules shrunk > 50%.
My son is now 16 years old and has foot size 46 (about 11 US), no
late effects, no skin alterations at all. Prof Seegenschmidt has done
all the treatments and follow-up examinations himself. He is an extremely
brigth and very knowlegable doctor, very kind and well organized.



... search carefully ... select carefully ... decide with wisdom ... trust in confidence ...

04/07/2008 03:58
newman 
04/07/2008 03:58
newman 

Re: Radiotherapy -WhiteMan

Hi Australia Calling,
Welcome to the forum, It is great to have positive feedback from patients who have had the Radiotherapy treatment for Dupuytrens/Ledderhose. How long ago did you and your son have the treatment in Essen? How about writing your experiences and they could be posted for other patients considering this option of treatment. Two other persons have listed on the Dupuytren Society Web Page. Have a look. http://www.dupuytren-online.info Personal Experiences.
All you need to do is contact Wolfgang Wach on his email listing your experience. w.wach _@_ dupuytren-online.info . For your information when I was in Essen Dec 07 they had just treated a father and daughter (12 Yr) for Ledderhose. Regards.

Edited at 04/22/08 13:17

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Radiotherapy   Ledderhose   treatment   examinations   UnitedHealthcare   Non-Malignant   Dupuytren   knowledgeable   experienced   interestingly   experiences   617-667-2345   dupuytren-online   Seegenschmiedt   Seegenschmidt   Massachusetts   radiation   treatments   protocol   617-643-1769