| Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules |
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07/12/2012 15:19
Gary1987 
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07/12/2012 15:19
Gary1987
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Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules
Good work again, always worth having the words out of the specialists mouth.
Gary
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07/12/2012 16:18
aryan 
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07/12/2012 16:18
aryan
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Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules
Hi
My second appointment with Dr Shaffer is only a 6 week interval. Do you think this will make a difference to the outcome of the treatment. Gary, is your next appointment with him a 6 week interval and did you ask him about this difference as compared to Prof S in Germany, who recommends 12 weeks?
Incidentally, after less than one week from the end of my first RT treatment I am noticing an improvement!!
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07/12/2012 17:06
alcook101
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07/12/2012 17:06
alcook101
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Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules
Gary1987:
Good work again, always worth having the words out of the specialists mouth.
Gary
Thanks Gary
aryan:
Hi
My second appointment with Dr Shaffer is only a 6 week interval. Do you think this will make a difference to the outcome of the treatment. Gary, is your next appointment with him a 6 week interval and did you ask him about this difference as compared to Prof S in Germany, who recommends 12 weeks?
Incidentally, after less than one week from the end of my first RT treatment I am noticing an improvement!!
Unfortunately it seems that few of these doctors speak to each other. Therefore the "new comers" get their information from the same place as us - the internet. Prof S is very open to discussions with doctors in the UK - I even emailed / rang Sue in Guildford to pass on this information. I'd previously had an appointment with Dr Shaffer but evaluated experience and cost and went to Hamburg instead. I'd hope that this treatment expands in the UK - but hopefully using the right dosage, time interval and the right treatment area on the hands to make sure all necessary areas are treated.
It seemed that "6 weeks" was mentioned in a few places including this website under "Radiation - Overview" and also Wikipedia. "6 weeks" was used some time ago in past studies.
Having the answers directly from Prof S is very helpful to clarify these points.
I changed the information on Wikipedia to the format that I received in Hamburg. The format of 5 x 3Gy - 12 weeks - 5 x 3Gy has also been confirmed by other patients on the forum.
A letter was posted today to Sir Andrew Dillon of NICE referring to concerns over the guidance of November 2010 which implies just one treatment of 15Gy. I would be surprised to get a response, but if they aren't informed they will end up treating patients incorrectly - and then the UK would conclude radiation therapy for Dupuytrens doesn't work!
Edited 07/12/12 21:24
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07/12/2012 18:22
aryan
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07/12/2012 18:22
aryan
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Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules
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.
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07/12/2012 18:35
lori 
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07/12/2012 18:35
lori
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Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules
alcook,
That is great. Wolfgang can we put his question-answer someplace in the treatment overview for radiation? These questions have come up over and over again since I started asking them 3 years ago. It would be nice to have it "out of the experts mouth" so to speak, in a central location where it is not lost in the many threads concerning these questions.
I am a big believer in the 2 session treatment protocol because it worked for me. My time frame between treatments was 7-8 weeks, not 12 weeks. with 5 x3gy each time It still worked and I am forever grateful.
Thank you alcook for posting this.
Lori
Edited 07/12/12 21:37
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07/12/2012 19:18
Gary1987
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07/12/2012 19:18
Gary1987
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Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules
My gap is also an 8 week gap and I don't think it is that this will not work but rather Prof S thinks that 12 weeks works better.
Gary
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07/12/2012 22:54
Christl 
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07/12/2012 22:54
Christl
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Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules
I also had treatment with Prof. S. My hands progressed after the first round. 12 weeks later I had the second round of RT and that did the trick. So I am concluding in this that maybe he wants to wait 3 month and if something else pops up, well it will be zapped. I will be there again for my feet in September, exactly one year later. Hope it works as good on my feet as it did on my hands. I read somewhere and please correct me if I am wrong, that the nodules in the hands are the same as the nodules in the feet.
Christl
P.S.: Nice interview with Prof. S. Both my nodules in my hands were coconuts and they completely disappeared! Cord is still there.
Edited 07/13/12 02:02
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07/12/2012 23:26
Brigit
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07/12/2012 23:26
Brigit
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Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules
alcook101:
Having had my first visit to Hamburg in June, I had some questions which I put to Prof Seegensmiedt by email on 11th July.
He replied within a few hours:
http://www.pushpullsigns.com/dupuytrenss...tquestions.html
Hi,
thanks for this info/link, very helpful for me but also a bit challenging. I had my RT done 7 weeks ago here in Australia, and I was advised 7 days x 3GY will have the same results as 5 days x 3GY / 2 times with 12 weeks in between. After reading Prof Seegenschmiedt's answers to your questions I now have some doubts about my treatment plan because nothing really improved with my right hand so far and it might need a second round of RT. So there is my question, "is it advisable to have a second round RT done and for how many days? If I go another 5 days with 3GY my total GY would be 36GY and maybe to much? I could go 3 days with 3 GY which would be exactly 30 GY and the suggested amount, but maybe 3 days RT don't do the trick...cheers Brigit
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07/13/2012 00:00
Christl
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07/13/2012 00:00
Christl
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Re: Questions put to Prof Seegenschmiedt about dosage intervals, NICE guidelines, cords and nodules
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
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