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11/10/2008 04:29
Megan 
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11/10/2008 04:29
Megan
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Re: RADIOTHERAPY -TIP.
Trevor, thanks for sending those links...they are interesting.
I'm scheduled for my second radiation round week after next. I was a little worried before I went for the radiation, but now that the first round is behind me, I don't even think about it any more.
Megan
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11/10/2008 05:13
newman 
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11/10/2008 05:13
newman
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Re: RADIOTHERAPY -TIP.
Australia Calling, Hi Trev.
I also looked at the links and if your interested do a Google search on Prof. Luther W BRADY (1st link) and Dr.Gil LEDERMAN (2nd Link) For information Prof BRADY is the writer and edited the recently published
"Radiotherapy for Non-Malignant Disorders" by Seegenschmiedt and others.He is a world respected Professor.I will let you look up LEDERMAN's trail to fame.
Have you thought of having the one session of 5x3 Gy radiotherapy and wait 6 months and see it you need the second dose. My right hand had only this protocol to treat the nodules and it has worked. It is now 12 months since I received the initial radiotherapy. Regards.
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11/10/2008 12:10
TrevB
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11/10/2008 12:10
TrevB
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Re: RADIOTHERAPY -TIP.
Thanks Megan. I'm only going for a consultation on Monday but the way my Dups is progressing and the fact that I have little use of my other (left) hand, one would assume that the chances of radiotherapy being an option are quite high, but my two biggest weaknesses are critical decision making and a dislike of all things medical, so not a great platform to start from.
Thanks for the links Newman I'll check them out later. I do feel that least is best but not sure how you go about having your own ideas when being treated by the NHS over here. If you're paying yourself then clearly you get time to discuss and go the way you want? I suppose there'd be no harm in asking, in fact I might print off your post and take it with me. 
Cambidgeshire, UK.
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11/11/2008 20:59
Mary 
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11/11/2008 20:59
Mary
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Re: RADIOTHERAPY -TIP.
Hi Trevb, I am looking forward to hearing how you get on on Monday as I am in the process of writing to Dr Goode to ask for an appointment. Did your GP have to refer you?
Good luck, hope you get the answers you are looking for.
Mary
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11/11/2008 21:55
TrevB
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11/11/2008 21:55
TrevB
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Re: RADIOTHERAPY -TIP.
Quote:
Hi Trevb, I am looking forward to hearing how you get on on Monday as I am in the process of writing to Dr Goode to ask for an appointment. Did your GP have to refer you?
Good luck, hope you get the answers you are looking for.
Mary
Hi Mary
I did that as well as e-mailing Poole hospital (can't remember which e-mail addresses) but without success apart from my GP writing back (I copied the letter to him) to say that it had to be referred to the area PCT. This is not the case. Go to your GP with as much relevant information copied off here as you need to back up your case and ask to be referred direct to Dr Goode at Poole. That's what I did and an appointment dropped through the letterbox a couple of weeks later. I've no idea how it works at the Poole end but hopefully they have the resources to keep taking Dups patients who wish to consider radiotherapy
Cambidgeshire, UK.
Edited 11/11/08 23:58
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11/12/2008 10:58
Wolfgangnot registered
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11/12/2008 10:58
Wolfgangnot registered
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email for Dr. Goode
Dr. Goode's assistant in Poole provided us with a new telephone number and email address, see http://www.dupuytren-online.info/radiotherapy_clinics.html. I guess this will facilitate communication.
Wolfgang
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11/12/2008 12:34
Mary
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11/12/2008 12:34
Mary
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Re: RADIOTHERAPY -TIP.
Thanks for that, I was given the new telephone number when I rang the old one found on this site but the email address is a real bonus. I am off this afternoon to ask my GP for a referral. I only hope he has no objections but then surely it is my decision in the end?
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11/12/2008 20:12
Issleib
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11/12/2008 20:12
Issleib
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Re: RADIOTHERAPY -TIP.
The skin on my hands is soft and supple. I'm sure a surgeon would find my hands easy to work on. Maybe a little thicking on the sole of my feet but nothing that would be a problem. These surgeons work on the hard calloused hands of workmen . Who are they trying to scare off.
Colleen
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11/17/2008 17:08
TrevB
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11/17/2008 17:08
TrevB
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Re: RADIOTHERAPY -TIP.
Quote:
Hi Trevb, I am looking forward to hearing how you get on on Monday as I am in the process of writing to Dr Goode to ask for an appointment. Did your GP have to refer you?
Good luck, hope you get the answers you are looking for.
Mary
Quote:
Hi Trevb, I am looking forward to hearing how you get on on Monday as I am in the process of writing to Dr Goode to ask for an appointment. Did your GP have to refer you?
Good luck, hope you get the answers you are looking for.
Mary
Went to Poole today. Saw a nice young lady first who did the prelim (disappointed not to see Dr Goode straight off but he no doubt has more pressing matters and is very busy). It seems that I'm a good candidate for radiotherapy before my hand gets beyond the point of no return. It would seem that there's more going on in there than you can see with the naked eye (Dr Goode found more on inspection than I could see). As I say, I felt a bit rushed but we agreed to go ahead in the new year. Friday (set up) then Mon to Friday treatment. If I'd been local then I perhaps could have been treated this side of Christmas but I'm not a traveller and it's no fun getting to Dorset and staying down there, especially at this time of year. I find it amazing and disappointing that NHS establishments local to me can't offer this treatment. For anyone up north though, Dr Goode did mention that one of his colleagues in Carlisle might be able to offer the treatment?
I not convinced that this is the best way to go (treatment wise) but it's the best of a bad set of options linked to an unpredictable disease. At least I've got some thinking time.
Cambidgeshire, UK.
Edited 11/17/08 19:18
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