| Lost password
277 users onlineYou are not loggend in.  Login
When does RT have to stop - how long can it be continued?
 1
 1
01/23/19 13:42
Hemingway 
01/23/19 13:42
Hemingway 
When does RT have to stop - how long can it be continued?

I am a newbie on the forum, but already impressed by the level of knowledge and professionalism shared on the threads I have read.
I am based in UK and have diagnosed Dupuytren's Contracture in both hands and diagnosed Lederhose disease in both feet - aren't I a lucky guy, almost the full set (no sign of Peyronie's...., fingers crossed if you will pardon the insensitivity)?
I understand the UK approach, in terms of free medical treatment for DC, is to wait until my fingers bend over, then attempt surgical treatments.
As I heard that Radiation Therapy was available privately, I found a Dr Shaffer (via Gary Manley of the UK Dupuytrens Society - and a word of thanks to Gary for huge reassurance when I first found I had the diseases...)
I have completed my RT, with two sets of treatment for each limb-end (each set of treatment consisting of a 'burst' of radiation, then a 12 week wait, then another 'burst'). So far so good - things seemed to have sort of stabilised and my lumps are only slowly growing...
My Question is:
UK seems to limit RT to two sets of treatment - I presume to limit the chance of suffering side-effects... I have seen no side effects of the RT to date..
Is anyone aware if this is a general limitation, or is it possible to get more RT in different countries?

Thanks in advance!

G

01/23/19 15:00
wach 

Administrator

01/23/19 15:00
wach 

Administrator

Re: When does RT have to stop - how long can it be continued?

Hi hemmingway,

welcome to our forum!

re maximum dose: it is globally a common standard to limit the dose to 30 Gy and from what you are describing it sounds like that you received those 30 Gy already. That does not exclude that in the future other areas of your hands or feet, which have so far not been exposed to RT, are beeing treated with RT. But every area should only be exposed to 30 Gy in total.

The reason is not immediate side effects, which are usually small, but long term risks https://www.dupuytren-online.info/radiot...de_effects.html . Only in a few cases the doctor might risk another 10-15 Gy in a previously treated area but that would be a rare exception.

Wolfgang

01/23/19 18:41
spanishbuddha 

Administrator

01/23/19 18:41
spanishbuddha 

Administrator

Re: When does RT have to stop - how long can it be continued?

In the US there are reports of Radiologists performing a full retreatment, of treated areas, after a period of a couple of years or so, a total of 60Gy. These are patient stories, and their veracity and the effectiveness of the retreatment is unknown.

However since you mention Dr Shaffer in the UK, he has published his own perspective on this here https://www.thedupuytrenspractice.com/re...erhose-disease/

01/24/19 20:38
Hemingway 
01/24/19 20:38
Hemingway 
Re: When does RT have to stop - how long can it be continued?

Thanks very much for the welcome, Wolfgang - I note that you are a pretty prolific administrator, but that is an impressive response time...!
I appreciate the information, the explanation - and the link too. I will check through the records I have, but I suspect that you are right and I have had my maximum already on most limb-ends.

As a matter of interest - on a slightly inquisitive note - may I ask your background and why you are administrator on the site.
I am sincerely not wishing to pry, but I am just very thankful for people such as you, who really do make such a difference to people when they are visited by this disease, as it is such a relief to have someone around who can point out some clarity and point people in a better direction. As I mentioned previously, when I was first diagnosed, I worried lots about the future impact this might have on me and someone such as yourself (Gary Manley from the UK Dupuytren Society) went a long way to helping to reassure and clarify for me.

best regards

Graham

01/24/19 20:55
Hemingway 
01/24/19 20:55
Hemingway 
Re: When does RT have to stop - how long can it be continued?

spanishbuddha:
In the US there are reports of Radiologists performing a full retreatment, of treated areas, after a period of a couple of years or so, a total of 60Gy. These are patient stories, and their veracity and the effectiveness of the retreatment is unknown.

However since you mention Dr Shaffer in the UK, he has published his own perspective on this here https://www.thedupuytrenspractice.com/re...erhose-disease/


Again, spanishbuddah (Mr?), I appreciate both your speedy response - and also the quality of the information - I am impressed by both - and your prolific responses.

Interesting to hear about the possibility of US radiologists doing this - as the initial treatments I had seemed to limit progression, I was interested to understand whether there were options for the future. I am currently 54 years of age and have noticed that the lump in my right foot seems to have grown, as well as the one on my right hand, although the latter is still quite small.

I was also interested in reading about the way in which the lumps connect to the skin and also the diagram about how contraction eventually works.... I am currently consciously stretching out my fingers a few times each day to try to help keep flexibility!

Similarly, I am intrigued by your background and your involvement - again, please be assured that the sort of replies you are giving makes a big difference to people!

kind regards

Graham

01/24/19 22:50
spanishbuddha 

Administrator

01/24/19 22:50
spanishbuddha 

Administrator

Re: When does RT have to stop - how long can it be continued?

Thank you for the kind words. I am just another (male) patient in the UK like you. I have bilateral DD, no LD and a keen interest in keeping the use of my hands as I play tennis and piano.

I have had the good fortune to meet Wolfgang the IDS chair, also ProfS, attend a conference in person on Dupuytren’s, helped create the BDS, and as part of that role spoken publicly about DD/LD and treatments with the help of Dr Shaffer. Now retired my background was engineering but a hobbyists’ interest in medicine, especially sports related medicine. I also participate, more openly but less frequently, on the FB groups.

I too was interested in retreatment via RT, as I injured one hand after RT which promoted a flare up. It has since settled down again although with irreversible changes. I am pleased to hear you report some positive signs after your RT, and would encourage everyone to research and have a treatment plan in mind for the future, since the nature of LD/DD is so unpredictable. Best wishes, SB

01/25/19 00:41
Prof.Seegenschmiedt 
01/25/19 00:41
Prof.Seegenschmiedt 

Re: When does RT have to stop - how long can it be continued?

Re-Treatment of Dupuytren or Ledderhose Disease after Radiotherapy

Dear Graham

We should exactly know where you have progressive disease after your previous radiotherapy course of 30Gy.

In my long-term experience with over 1000 patients radiotherapy re-treatment after previous radiotherapy was a rare but possible solution under certain conditions:

(1) there should be a proven clinical progression of the disease, i.e. new nodules or cords, without a major functional deficit (maximum 10 - 30 degree extension deficit of digits),that means an early stage of the disease.

(2) proven clinical progression of disease outside the previously irradiated areas can be treated with up to 30Gy, when there is no overlap with the previous radiotherapy fields.

(3) proven clinical progression of disease inside the previously irradiated areas can be treated with additional 15Gy if there is a discrete region of flare-up (e.g. a new nodule) and the skin conditions are not compromised (e.g. severe dryness or fibrosis after radiotherapy). Thus 45 Gy is the upper dose limit in selected cases. Careful documentation of all treatment fields is an essential precondition

In my experience several patients had a good benefit from the 3rd radiotherapy series mainly by stop of further progression of the disease locally. I have never applied a 4th radiotherapy series which would mean a dose of 60Gy.

Best regards and wishes, Prof. Seegenschmiedt

Edited 01/25/19 00:45

01/25/19 11:43
Hemingway 
01/25/19 11:43
Hemingway 
Re: When does RT have to stop - how long can it be continued?

Thank you sincerely, Professor Seegenschmiedt, for your very informative response. I was particularly interested in point 3, in terms of clinical progression inside the previously irradiated areas, as I believe I have this on my right hand, in particular a small (0.5cm) lump that has grown further since initial treatments.

I will consider your comments and contemplate following this up further at a later date.

Thanks very much for providing the information - I, like you, play tennis and as my serve is not great even without the lump, would hope to avoid it deteriorating if the lump were to grow, especially as my wife can beat me currently when my serve is at its best...

kind regards

Graham

04/28/19 02:48
inquisitivelady 
04/28/19 02:48
inquisitivelady 
Re: When does RT have to stop - how long can it be continued?

If I have new pain in my fingers and thumbs a month after my first round of RT of 15 gys total radiation so far,
and my fingers and thumb were not included in my first radiation set of 5 days, should radiation area be expanded in second set? and if so should the third set catch up the newly radiated fingers and thumb so all is 30 gy total? I would guess it is then a decision if you have a third set to either re radiate first field or block off first field. no new nodules outside of field, only new cords that i can perhaps feel going up to pinky and ring and middle and new thumb cord.... Due for next round end of May and RO never had this happen before.

04/28/19 09:40
spanishbuddha 

Administrator

04/28/19 09:40
spanishbuddha 

Administrator

Re: When does RT have to stop - how long can it be continued?

The new pain might not be DD? Usually 30Gy is the effective total dose for one treatment of a single area, so that should answer your question. But you need a consultation and discussion with doctor and radiologist about what is happening. It might just be local short term inflammation and referred pain set off by the first round of treatment. Maybe it will settle down or there’s enough time to alert the radiologist of your concern. Did you read this https://www.dupuytren-online.info/Forum_...50943427.html#2 about the size of the field?

Edited 04/28/19 09:40

 1
 1
erhose-disease   progression   treatment   thedupuytrenspractice   disease   Radiotherapy   unpredictable   continued   previously   Re-Treatment   spanishbuddha   information   Seegenschmiedt   retreatment   Radiologists   administrator   professionalism   Dupuytren’s   dupuytren-online   effectiveness