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Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules
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07/13/2012 00:30
Brigit 
07/13/2012 00:30
Brigit 
Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules

Christl:
Birgit, I don't think 36 Gys would be too much. I know Prof. S has treated people that had already treatment here in the States. I know of one that was treated once in the States -don't know how many Gys she got - but was given Prof. S's full treatment, 5x3Gys 2x.

Christl

Thanks Christl, I heard that as well on this forum, but my radiologist wasn't happy about it when I considered a second round of RT to him last week. He said it can be done but the risks of side effects etc have to be taken into account and in his opinion I should not do it again. So I guess I will wait for another month and see if I have any improvement, and if not I will consider another 3 or 5 days of RT, just not sure which one..cheers Brigit

07/14/2012 18:38
alcook101 
07/14/2012 18:38
alcook101 
Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules

aryan:
Thank you for that answer. Maybe I'll ask Dr Shaffer about the discrepancy between RT treatment intervals. I don't want to appear critical in any way, especially as the first week of treatment appears to be working, but there is a big time difference and Prof S has been treating people for many years with great success. And as you say the more successful treatment in the UK becomes, the more likely it is that NICE will continue to approve RT treatment.

It seems that the "6 week" interval was an older version of the treatment which Prof S published on treatments recorded between 1982-1993

http://dupuytrensfoundation.org/DupPDFs/2010_Medline_XRT.pdf

The newer "12 week" interval is published in the book called "Dupuytren's Disease and Related Hyperproliferative Disorders: Principles, Research, and Clinical Perspectives" was published in Jan 2012. On Page 355 the protocol used at the Strahlenzentrum is described:

http://books.google.co.uk/books?id=0eKjm...p;q&f=false

Al

Edited 07/14/12 22:29

07/15/2012 16:01
aryan 
07/15/2012 16:01
aryan 
Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules

Hi Al

Thanks for that info regarding intervals between RT treatments. I email Dr Shaffer who says there is no real research or data on the correct time scale, and he feels that 6 weeks is fine as long as the skin seems OK. I'm not sure whether the gap is to allow any side effects from the RT (visible or not) to subside and for the skin to recover or whether its to wait to see if any further nodules appear which need treating. Or maybe both. Confused!

Good luck with your treatment with Prof Seegenschmeidt.

aryan

07/16/2012 00:11
alcook101 
07/16/2012 00:11
alcook101 
Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules

Hi Aryan

Looking at published data...

Comparisons of outcomes for "Stage N" using 5 x 3Gy - gap - 5 x 3Gy
===================================================================

Study 3 (Strahlenther Onkol. 2001 Nov;177(11):604-10)

http://dupuytrensfoundation.org/DupPDFs/2010_Medline_XRT.pdf

interval 6-8 weeks - 84% remained stable



"Group C" from Jan 2012 book - page 360

http://books.google.co.uk/books?id=0eKjm...p;q&f=false

interval 10-12 weeks - 96.5% remained stable



Have I misread this?

Al

Edited 07/16/12 03:12

07/16/2012 09:43
aryan 
07/16/2012 09:43
aryan 
Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules

Thanks for those links Al. You've really done your research! However the second one comes up as 'not found'. Could you re-send it? Then I can send Dr Shaffer this evidence.

This was his reply to me regarding the 'gap' question:

'Regarding the gap between treatments, the "standard" gap between treatments, as in the study published by Prof Seegenschmiedt is 8 weeks. However, it is not always possible to do it exactly 8 weeks after, so I do have some flexibility in this. Certainly in other publications, they have increased the interval to 10-12 weeks and the treatment has been just as effective. In another publication (Betz et al, Strahlenther Onkol 2010;186:82–90), where they reported results up to 13 years, they used a 6 week interval. in your case, if you had marked side-effects that are at 6 weeks, we could consider postponing the 2nd phase, although I've never had to do that before. The other important point is that there is currently no published evidence that compares different gaps either regarding effectiveness or side-effects.'

Have you had you first treatment in Hamburg yet?

Aryan

07/16/2012 11:54
Gary1987 
07/16/2012 11:54
Gary1987 
Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules

Hi,

The second link that he posted was from this book http://www.amazon.co.uk/Dupuytrens-Disea...3225&sr=1-3

On page 360: Must admit that I am having problems accessing it on-line (through Google book and springer link), if you continue to have problems obtaining access to the data let me know and I will see what I can do as I own the book.

Gary

07/16/2012 14:03
Lanod 
07/16/2012 14:03
Lanod 
Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules

Gary - thank you for this information. The Google Books link works fine for me. Since the Google link shows just part of the full book we cannot see the early part of the chapter - so when we see page 360 results we will not have read the earlier pages. So we we see no mention of the 12 week gap. Can you confirm that the 12 weeks is specified earlier in the chapter and can you give us the reference (from the book) to the actual published paper? We somehow need to see this paper to support the 12 week gap feature in the RT treatments.

Gary - sorry if we seem to be turning to you as the 'oracle' on this one - but you did confess to owning a copy of the book!

07/16/2012 14:06
alcook101 
07/16/2012 14:06
alcook101 
Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules

Charles Eaton, M. Heinrich Seegenschmiedt, Ardeshir Bayat, Giulio Gabbiani, Paul Werker and Wolfgang Wach, Dupuytren’s Disease and Related Hyperproliferative Disorders Principles, Research, and Clinical Perspectives, Jan 2012.

I can't get to the pages now either. However I did take a note of the information:

The 10-12 week gap is specified on page 355 "Group C".

Stage N is nodules and cords only. ie no deformation.

For the new book Jan 2012, the mean follow up time was 8.5 years.

The protocol was 5 x 3Gy, gap 10-12 weeks, 5 x 3Gy.

Page 360:
For the study for Group C following the above protocol the book
reported on 7 out of 199 hands at stage N progressing to the next stage
which is N/I ie some degree of involvment and deformity.

Therefore 3.5% progressed and 96.5% remained stable.

- Gary as you have the book can you confirm I've read this right please. It seems odd that no one is quoting 96.5% and yet this is published data.

These figures look really good. The last few percent could easily be technician error or some other reason, maybe hands on the margins of N/I, machine not working properly. Also for some of the failures the treatment area might not have been big enough.

It looks from the published data that Prof S switched to the 12 week format just before 1997, before that he was doing the 6 week version.

Although it is for Ledderhose this poster shows the 12 weeks:

http://www.dupuytren-online.info/ASTRO_2...se_ASTRO_06.JPG

Prof Seegenschmiedt uses the same treatment interval for Dupuyrens as Ledderhose.

- Aryan. I had one phase of treatments in Hamburg in June 2012 and the next phase is in Sept. The hand that is at a less progressed stage seems to be reacting better in that the unaided flexibility of the fingers seems to have improved slightly.

Edited 07/16/12 17:15

07/16/2012 15:46
Gary1987 
07/16/2012 15:46
Gary1987 
Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules

You are correct that on page 355 it states there is a gap of 10-12 weeks.

As best I can tell this was not based on an actual published paper but rather data put together by Prof S et al for the purposes of the Dupuytren's Conference and this book so just referencing this book should be good enough. In this book I do not think that there is a control group that gets the treatment after 8 weeks though and the other groups are controls of no treatment and only 1 week.

Feel free to ask me questions about the stuff in the book, not too much though I am a busy man with my second week of radiotherapy being this week and I am starting a new job next week. I was very lucky that a friend of mine decided to buy this for my birthday, makes for some good blog posts and easy to check my stats before posting.

Thanks

Gary

07/16/2012 15:52
aryan 
07/16/2012 15:52
aryan 
Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules

Thanks everyone, Alcook, Gary, Lanod for all the facts and figures on dosage intervals for RT. I agree it would be great to have the published paper on the 10-12 week gap or sight of the relevant pages of the book. I'm afraid I still can't get the link or bring up the correct pages on Amazon. Could you scan the pages in Gary? Sorry to ask you this after all you do already on this site!

I must say I now feel quite uneasy about having the second phase of treatment as early as 6 weeks, with all this positive info for 10/12 weeks. I guess 8 weeks would be a reasonable compromise. Its a bit embarrassing to question Dr Shaffer on this, but with published data I would feel more confident. And after all they are my hands and its my credit card!

Aryan

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