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RT again
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10/14/2010 14:42
Gibbs 
10/14/2010 14:42
Gibbs 
Re: RT again

^^
Very interesting reading about your experience with how RT has worked. Thank you for sharing. I hope this second round of RT ends the progression for you, but as you said, it really is unpredictable. I do like the success rates though in the published studies completed in Germany and if used as a measure, you'll most likely have a long-term remission.

I should have my own dates booked by the end of this week and I really am looking forward to RT success! I'll then be able to share with the forum. I'll then see what steps I can take to get this approved in Canada. I found out it's not easy trying to locate the right person to talk with to have a treatment considered. RT oncology departments in the three hospitals I called here in Toronto (all very reputable and large) had never even heard of RT for Dupuytren's and were of little help in directing me on how I might work to get treatments approved for others in Canada, or for that matter what the process for treatment approval even is!!

10/14/2010 19:32
flojo 
10/14/2010 19:32
flojo 
Re: RT again

While at Scripps, I picked up a card that says "RT ANSWERS: Answers to your Radiation Therapy Questions" and the URL is [URL]www.rtanswers.org[/url]
The site is mostly about RT for cancer, of course, but there was a little about RT for non-malignant conditions. There were lists of places located all over that provide RT that might be helpful to folks.
I'm not sure how, but maybe we can work together to somehow make that a site more specific about RT for Dupuytren's.

11/30/2010 13:36
allisun 
11/30/2010 13:36
allisun 
Re: RT again

I'm also having to go back for a second round of RT, but mine is in the same area they treated the first time. A nodule has been getting bigger and my contracture worse. So, I am really hoping this stops the second time around because I'm only 27 (Dup started at 23/24 from kitchen knife wound) and would love to not have to battle this for the rest of my life.

Does anyone know of any studies that show recurrence rates? I also wonder what recurrence rates are like after two rounds of treatment?

11/30/2010 15:54
Gibbs 
11/30/2010 15:54
Gibbs 
Re: RT again

Allisun,

Here are three published clinical studies I found online at Pubmed, one comparing two different treatment protocols and the other two, long term studies:

2010: http://www.ncbi.nlm.nih.gov/pubmed/20127225

2001: http://www.ncbi.nlm.nih.gov/pubmed/11172962

2001: http://www.ncbi.nlm.nih.gov/pubmed/8960518


They all use the treatment protocol of 3GY X 10 in two series of 5, separated by 6-8 wks. However one also compares 3GY x 7 over 14 days finding no significant difference. It depends on stage with stage N showing generally 80-90% long-term success and then declining as DPC stage advances. I doesn't seem that they have studies for rates of success with one treatment so I'm curious as to why your doctor made that choice.

I just returned from Hamburg and had treatment with Prof Seegenschmiedt for DPC of the left hand. I had 3GY x 5 days. However, I was told to wait a minimum of 3 months before the second course and he indicated it was okay to be 4 months. That differs from the period of 6-8 wks in the studies. I suspect that with his vast experience over 20 years or more, he may be basing it on observed clinical outcomes as he was an author of two of the above studies. I trust his judgment and clearly we may not be aware of what they've observed and not published while treating this over the years. I met another patient from the U.S. who chose the 3GY X 7 days. Prof S. advises the 5 x 2 plan if at all possible to minimize side effects and max benefits, but both are used.

At the very least I think I would be asking any doctor who has a significantly different treatment plan to explain the reasons. Obviously we aren't radiologists and possibly they are basing it on something sensible (i hope!). As for the experience level of the radiologist, more is always better but if they use MRI or CT to map the disease and follow the right protocol I seriously doubt that I would be concerned. They are trained and every patient and application they face is different so why would one assume they don't understand how to radiate a benign tumour just because it's called Dups?

If you want radiation, act fast as once it progresses you will have to look at the alternatives. I researched for over a month asking questions here and waiting on pricing from the U.S to find mine advanced so quickly that I'm borderline N1 on one contracture which already deceases my chance for success. Good luck!



allisun:
I'm also having to go back for a second round of RT, but mine is in the same area they treated the first time. A nodule has been getting bigger and my contracture worse. So, I am really hoping this stops the second time around because I'm only 27 (Dup started at 23/24 from kitchen knife wound) and would love to not have to battle this for the rest of my life.

Does anyone know of any studies that show recurrence rates? I also wonder what recurrence rates are like after two rounds of treatment?

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developed   disease   treatment   misremembered   understanding   radiated   liability   Seegenschmiedt   significantly   radiation   because   Dupuytren   treatments   progression   studies   experience   nodules   doctors   metacarpal   contracture