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Radiotherapy at Parkside Hospital, London
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12/10/2012 14:52
potter 
12/10/2012 14:52
potter 
Re: Radiotherapy at Parkside Hospital, London

Vikingorigins:
"Only 4% of patients treated reported that their disease had progressed, which is the normal course of this progressive disease without treatment."

Could this sentence be rather read as : the normal course of disease without treatment is progression. With RT it brings it down to 4%. ?

Could be, tho' the one sure thing about DD is that it will, at some point, progress - treated or not! <sigh>

Potter

12/10/2012 17:08
PhilipHa1 
12/10/2012 17:08
PhilipHa1 
Re: Radiotherapy at Parkside Hospital, London

potter:
Vikingorigins:
"Only 4% of patients treated reported that their disease had progressed, which is the normal course of this progressive disease without treatment."

Could this sentence be rather read as : the normal course of disease without treatment is progression. With RT it brings it down to 4%. ?

Could be, tho' the one sure thing about DD is that it will, at some point, progress - treated or not! <sigh>

Potter
I am not sure about your statement that DD is guaranteed to progress treated or not? I am UK based and was treated on both hands in Munich with RT in 1998/1999 at the age of 34, 14 years later I have suffered no progression since my treatment? I am hoping I might be lucky

I am guessing with RT there is an expectation the DD isn't going to get better over the long term, but that is relative to the post treantment state? My DD improved during and in the 3 months after treatment, and since then has not progressed. It would have to progress significantly to get me back to my pre-treatment state. Hence it depends a little on your datum, whether you are comparing with a pre-treatment state or that 3 months after treatment.

As an aside I am impressed by the number of DD patients Parkside claimed to have treated, there is clearly a need in the UK and it would be great if it could be done for stafe N/N1 by default on the NHS - it shouldn't have to be much more expensive than the alternatives. In fact it should be cheaper using the older style X-ray machines, mine cost 300 euro per hand, plus travel/accommodation in Germany.

12/10/2012 18:01
spanishbuddha 

Administrator

12/10/2012 18:01
spanishbuddha 

Administrator

Re: Radiotherapy at Parkside Hospital, London

Interesting discussion, but as I commented elsewhere, I am not aware of what physiological changes if any have occurred to radiated tissue such that Dupuytren's is prevented from recurring again. Do you have this info? My reading of ProfS charts shown at the 2010 Symposium is that even he is only suggesting that the disease is slowed down or delayed. Otherwise we're talking about a 'cure' and I don't think that is the case. The complicating factor is that for many the condition goes into remission or slowdown anyway without any treatment. This could be you too Philip.

12/10/2012 18:26
callie 
12/10/2012 18:26
callie 
Re: Radiotherapy at Parkside Hospital, London

Spanishbuddha, what is your take on the sentence, "Only 4% of patients treated reported that their disease had progressed, which is the normal course of this progressive disease without treatment"?

It would be nice if they would correct the way it was written. That (hopefully) is wrong what they have stated.

12/10/2012 18:29
wach 

Administrator

12/10/2012 18:29
wach 

Administrator

Re: Radiotherapy at Parkside Hospital, London

Hi SB

you are certainly right: Dupuytren's cannot be cured (yet?). The disease can start everywhere outside or evenwithin the irradiated area.

Still, there are pyhsiological changes, have to be, otherwise RT wouldn't have any effect at all and would not stop or delay disease progression. What these changes are in detail is still being discussed. An idea might give the paper by Rodemann and Bläse http://www.dupuytren-online.info/DEGRO_2...lular_basis.pdf .

Because Dupuytren's is progressing slowly and sometimes comes to a halt, even if not treated, it's important to compare RT results to a not treated control group, as Seegenschmiedt did in his study (= chapter 44 of the book on Dupuytren's disease and his presentation in Miami 2010).

Wolfgang

spanishbuddha:
Interesting discussion, but as I commented elsewhere, I am not aware of what physiological changes if any have occurred to radiated tissue such that Dupuytren's is prevented from recurring again. Do you have this info? My reading of ProfS charts shown at the 2010 Symposium is that even he is only suggesting that the disease is slowed down or delayed. Otherwise we're talking about a 'cure' and I don't think that is the case. The complicating factor is that for many the condition goes into remission or slowdown anyway without any treatment. This could be you too Philip.

12/10/2012 18:37
alcook101 
12/10/2012 18:37
alcook101 
Re: Radiotherapy at Parkside Hospital, London - emailed Dr Glees

Hi callie

Having had my feet and hands previously felt by Dr Glees at no cost, I've emailed him about the wording on the Parkside website.

Al

Edited 12/10/12 20:37

12/10/2012 18:40
PhilipHa1 
12/10/2012 18:40
PhilipHa1 
Re: Radiotherapy at Parkside Hospital, London

I think it probably comes down to interpretation, as far as I understand RT has the ability to substantially slow down the progress of DD, to a point of almost no progression.

In terms of my personal symptoms, if I rated my symptoms on a scale of 1 to 10, prior to treatment in 1998 I might have rated them as 3/10, 3 months after treatment I had greater movement and either fewer or softer nodules my rating was 2/10. If my DD does progress, for example at 0.25/10 per decade - it would take 4 decades to get me back to 3/10. So as far as I am concerned my DD symptoms will not progress until 40 years after treatment relative to prior to treatment. The reality is I have had no pregression since so I don't think its inevitable that I will progress relative to the state of my hands prior to treatment before I die?

I hope you understand what I am trying to say? It may not match clinical definitions of progression, but I am very happy with my treatment to date, and if I am lucky my hands might be in a better state when I reach my 70s than when I was 34?

As another aside, I only completed 5 days on treatment on either hand, so half the normal, my adviser suggests that I could therefore have futher RT treatment in future if necessary? I am not advising anyone else to skip treatment, for me it was just a matter of logistics (travelling to Germany) and the fact I was happy after the 1st round.

12/10/2012 19:48
Vikingorigins 
12/10/2012 19:48
Vikingorigins 

Re: Radiotherapy at Parkside Hospital, London

Wolfgang,
My understanding correct of the paper you just sent the link ( the paper by Rodemann and Bläse http://www.dupuytren-online.info/DEGRO_2...lular_basis.pdf ) is that a LOW dose of RT is better than a HIGH dose

Do I understand correctly ?

12/10/2012 20:02
spanishbuddha 

Administrator

12/10/2012 20:02
spanishbuddha 

Administrator

Re: Radiotherapy at Parkside Hospital, London

callie:
Spanishbuddha, what is your take on the sentence, "Only 4% of patients treated reported that their disease had progressed, which is the normal course of this progressive disease without treatment"?

It would be nice if they would correct the way it was written. That (hopefully) is wrong what they have stated.
Callie, I could ask Dr Glees and his radiologist, as I have exchanged emails with them in the past, but I see now alcook has offered to make contact, so let's wait for a response from him.

Edited 12/10/12 22:02

12/10/2012 21:39
alcook101 
12/10/2012 21:39
alcook101 
Re: Radiotherapy at Parkside Hospital, London

post removed.

Edited 12/12/12 12:51

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