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Newbie with Question About Radiation Therapy
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04/13/12 17:35
cschieber 
04/13/12 17:35
cschieber 
Newbie with Question About Radiation Therapy

Hello all. I just got diagnosed today with Dupuytrans and am not sure whether I'd be a candidate for radiation therapy because I don't present in the usual way. It has taken a year to get this diagnosis because I don't have any nodules on my palms, just the PIP joints of several fingers. It started with the right index finger and has progressed to others. I have huge nodules on the tops of the joints, which are quite painful, and smaller ones with possible cords underneath. The hand surgeon I saw today told me there wasn't any treatment that would be effective at this stage. I don't even know how to start looking into RT. Does anyone know of a specialist in the Philadelphia area? The closest listed on this site is Richmond VA. I am certainly willing to travel if need be. I'm only 55 and really don't want to miss an opportunity to slow down this disease. My doctor told me the younger you are when you get it, the more aggressive it is. I'm really glad that I found this wonderful forum. Is there anyone who can advise me on how to proceed from here? TIA.

04/16/12 05:41
flojo 
04/16/12 05:41
flojo 
Re: Newbie with Question About Radiation Therapy

Welcome to the Forum! You have definitely found the right place. This is a wonderful program.

It sounds like you may be a candidate for RT. Surgeons and other traditional medicine doctors don't know about RT. The trip to Richmond may be well worth it. You can call them or email them first and ask questions.

I had RT on my right hand 3 years ago at Scripps, San Diego. I made contact with the radiology department at Loma Linda UMC regarding my left hand. It seems like it is time to have radiation done on my left hand and I am going for a planning appointment tomorrow. I feel confident in him. He knows radiation and has done research to know about RT for Dupuytren's. Others have found their own in a similar way. That's how the list of clinics and radiologists is the length it is now. 3 years ago, there were about 6 names.

You have probably seen the recommendations for Dr. Seegenschmiedt in Hamburg, Germany. People call and talk to him and make the trip to Germany to see him.
Tel.: +49(0)40 / 2442458-42
Fax: +49(0)40 / 2442458-44
Prof. Heinrich Seegenschmiedt and Dr. Fabian Fehlauer

I encourage you to be checked somewhere for RT.

Come back with more questions and good luck.

06/18/12 11:11
penny88 
06/18/12 11:11
penny88 
Re: Newbie with Question About Radiation Therapy

I am also a newbie and I found this online community because my aunt had been diagnosed dupuytren like a week ago, I live with her nowadays and she asked me to find more about this disease and look what I found, a real online community specific to subject, simply Hi everyone and thanks for the support.

07/02/12 21:14
bstenman 
07/02/12 21:14
bstenman 
Re: Newbie with Question About Radiation Therapy

X-ray treatment is done to retard the progression of the disease. It seldom reverses it to any extent. The sooner it is done the better. In my case the diagnosis was not handled properly by my primary care physician at the time and my XRT was delayed by a year. The Dupuytren's was not evident in my right hand, only my left hand, but when I visited Dr. Siegenschmiedt in Essen he palpated both my hands and told me the disease had progressed significantly in both my hands.

I had both hands treated and the right hand which was less evident at the time seems to have had the disease halted 99%. The left hand that was further along required a procedure to loosen a chord which I had done last year with Xiaflex injections.

NA and Xiaflex are treatments to relieve the symptoms of the disease and they are both very effective and both are relatively safe.

Don't lose precious time with vitamin E and other placebo treatments that will result in lost time and delayed treatment which is not good. In 2007 there was no one providing XRT for Dupuytren's in the USA so traveling to Germany was my only option. The good news was that there level of medical care is higher and at 1/10 the cost of similar treatments in the USA.

07/25/12 03:38
anderaa 
07/25/12 03:38
anderaa 
Re: Newbie with Question About Radiation Therapy

I'm also looking for someone in the Philadelphia area. But I might settle for someone to contact in Richmond. Can you tell me the name, or at least the clinic/hospital.

I feel the same urgency, actually.

Alison

07/25/12 07:07
flojo 
07/25/12 07:07
flojo 
Re: Newbie with Question About Radiation Therapy

Look under the drop down menu at the top of this page under Treatment for clinics. Below is the information about the one in Richmond. Others have posted that they are very pleased with the the doctors, the clinic, and the results of their RT there.


Virginia Commonwealth University

Department of Radiation Oncology

Assist. Profs. Drs. Laurie Cuttino and Elisabeth Weiss

401 College Street, P.O. Box 980037
Richmond, Virginia 23298-0037
Phone: (804) 828-7232, Fax: (804) 828-7981

VCU_oncology_dept1 and VCU_oncology_dept2

09/21/12 08:01
dominic12 
09/21/12 08:01
dominic12 
Re: Newbie with Question About Radiation Therapy

Well, i was looking for the same answer. Really liked the information shared by you guys. Thank you for sharing it online.

09/25/12 21:58
chetherington 
09/25/12 21:58
chetherington 
Re: Newbie with Question About Radiation Therapy

I was diagnosed with early stage Dupuytrens 18 months ago and started to go down the traditional route that would have ended up with surgery as the only option seen to be available on the Health Service in the UK at that time. I had a small nodule on the right palm and at the base of the little finger. Having found the details of RT in the UK, my doctor agreed to refer me and I had to travel 300 miles to see the consultant and receive treatment at Guildford (near London, for non UK readers) I was deemed to be suitable for treatment as it was early stages, with good chance of success, "but no guarantees" and I started the treatment immediately with 2 treatments of 5 days each, 8 weeks apart. Including travel, accommodation and treatment I paid £3,000.

Unfortunately, the treatment was totally unsuccessful and I was resigned to surgery at some time. Incidentally, I was told that traditional surgery is made much more difficult post RT as the tissue in the hand has been affected by RT. This by the consultant who would have carried out the procedure.

However, the local news station carried a feature saying that a (relatively) local hospital is now licensed for carrying out Xiapex treatment. My little finger had worsened to 60 degrees and the ring finger to 30 degrees, both at the first knuckle only i.e there was no curling of the finger. (Apologies if I do not know the correct terminology for these things)

To cut to the chase I had Xiapex treatment 6 weeks ago. 6 injections were given in the tendon beneath the pad at the base of my little finger. If anybody tells you that this doesn't hurt, do not believe anything else they might tell you because it hurts like ****. But after a cup of tea, I was able to drive 60 miles home.

The following day, I attended the hospital again and the joint was "cracked", i.e physically straightened. Yes, that was as painful as it sounds as well. But after a few days of flexing the fingers , alternatively making a fist and straightening the hand my fingers are fully straight, and pain free. For any Brits reading this, the procedure was carried out at the Nuffield Hospital in Newcastle upon Tyne by Mr Nick Williams, a man of boundless energy , charm and skill.

So, Newbie, good luck if you follow the RT route, but I advise taking the time to find out the alternatives.

09/25/12 23:45
spanishbuddha 

Administrator

09/25/12 23:45
spanishbuddha 

Administrator

Re: Newbie with Question About Radiation Therapy

Interesting story chetherington thank you. It does sound like your Dupuytren's was active at the time of RT, so statistically you had a good chance of it slowing down or halting the progression. Wouldn't it be nice to know why it didn't help in your case. Does your RT treating consultant have any thoughts about why?

I suspect the Xiapex it was not injected into the tendon, as that would be disastrous for finger function, but injected into the cord. Was that on the NHS or private? Let us know in a few months how the Xiapex works out.

09/26/12 18:47
Larry 
09/26/12 18:47
Larry 
Re: Newbie with Question About Radiation Therapy

dominic12:
Well, i was looking for the same answer. Really liked the information shared by you guys. Thank you for sharing it online.


I would like to know what was the status of your hand to begin with - photographs etc. - because RT may be just too late for you and unexperienced doctors don't know when not to treat ( ... if too late or too early).

How much experience had this doctor to justify his opinion about to use radiotherapy ...

It may go this way, but usually starting with a fully flat hand your chances are about 90% to stay stable with RT (that's what the study by Betz et al. from Germany show with a long-term observation time of 13 years ...

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