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Radiation in the USA
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06/14/2010 13:59
maxine 
06/14/2010 13:59
maxine 
Radiation in the USA

HI. I have just completed the first 5 day treatment series on my right palm where two prominent nodules were treated. I can feel the the pulling sensation has been arrested so I feel like the disease progression is stopped. The nodules are still quite visible. There seems to be less swelling around that area. Will see if other changes occur before my final round of radiation in August. I am encouraged by the good results out of Germany which last for many years. Maxine

06/16/2010 01:04
flojo 
06/16/2010 01:04
flojo 
Re: Radiation in the USA

About 2 weeks ago, I went to see Dr. T at Scripps, La Jolla for a followup after the RT done on my right palm in
July /09. He checked my hand, palpated it thoroughly, asked if it was better after RT, marked 3 places and took a picture, felt both feet for Ledderhose's and told me that we don't need to do anything now. He said, "Don't look for trouble."

This was the first time he has seen me since RT. He was very interested in whether it had been effective in improving use of my hand. I told him that my grip is better, no itchy/crawly feelings and less tightness. He was very interested in validating that I had better function in my hand after RT. I do give RT the credit for stopping progression as well as some unanticipated improvement in function. He said that the places he marked in my hand may be spots that didn't get completely stopped. The places marked were harder nodules or cords. They were not at the surface but were a little deeper. He didn't say that, but that's how they feel to me. He did say that he noticed that there was thickening in my right foot as compared to the left foot, but that he really doesn't know what it is. He doesn't want me to look for trouble on my feet either.

So, I'll put my hypochrondriac (sp?) side away for a while. If progression becomes more evident, I'll probably consider NA for the cords that are visible. Dr. T thinks the dimpling in the first joint of my pinky may be from a cord in my palm that is pulling on it. That cord can be felt fairly deep in my palm.

I find him very professional and he doesn't rush to do RT, wants to be sure the symptoms indicate active Dupuytren's for doing RT and a low dosage. If in doubt, he is for waiting. I like that.

From what I read on this Forum, there are other radiologists in the U.S. who are equally capable and professional. More and more, we are getting the word out about alternative treatments. Some of the naysayers will never want to hear it, but for those of us who have this weird disease, we know. Thank you Wolfgang and this website. This Forum saves hands and feet.

06/16/2010 02:27
LubaM. 
06/16/2010 02:27
LubaM. 
Re: Radiation in the USA

My experience of RT is similar to Flora's (Flojo)...Six months ago, I also had RT with Dr. T. at Scripps LaJolla, on my left hand (entire palm and down one finger) and for Ledderhose on left foot (two hard nodules).

So far... I am very satisfied with the results. All the nodules are smaller and softer and the itchy/burning feeling on both hand and foot are gone. The tightness on my left hand is also gone and I can open my hand much wider.

I feel that RT is a great choice for early stage disease both for DD and Ledderhose.

07/05/2010 20:02
patandpaula 
07/05/2010 20:02
patandpaula 
Re: Radiation in the USA

Maxine,
Did you have only one treatment per day? I had radiation at the Oklahoma center and it has not helped at all, in face things are definitely worse. But I was not thrilled with the experience and I feel that several things that occured during treatment might have affected the outcome. I am wondering if you can have repeat radiation treatment. I had treatment twice a day four four days, but I am still not sure of exactly how MUCH radiation they gave me each time.

If anyone has had repeat radiation therapy please let me know.
Thanks

Paula

07/07/2010 23:50
bstenman 
07/07/2010 23:50
bstenman 
Re: Radiation in the USA

Two protocols were developed in Germany with one consisting of a standard dosage of radiation for 5 days straight, then a 60 day break to allow the body to recover, and then the 5 treatments over 5 days is repeated. Another approach is to provide a heavier dose of radiation every other day for 7 sessions. In general the 5 and 5 is considered the most effective and safest.

The exact dosage depends upon the type of equipment that is being used. The one used at the Alfried Krupp Krankenhaus in Essen, DE is different than the one that was used at UCSF Medical Center.

Experience on the part of the supervising physician is important. I had my hands palpated by Dr. Denkler prior to his performing a NA procedure on both hands. He did not believe that the Dupuytren's had progressed very far in my right hand. When 60 days later my hands were palpated by Dr. Seegenschmiedt in Essen, his was of the opinion that it had progressed as much in my right hand even though the contracture was less evident.

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tightness   supervising   treatments   unanticipated   progressed   hypochrondriac   improvement   contracture   treatment   experience   interested   Seegenschmiedt   nodules   Ledderhose   alternative   progression   radiologists   professional   Radiation   Krankenhaus