UK treatment of Dupytrens using radiation (8) | Dupuytren Disease

philwaite · 2008-04-06T16:04:55+00:00

I have recently attended the oncology department at Poole Hospital in Dorset and completed two sessions of treatment. Each session comprised of 5 consecutive days of low dose radiation (with a break of 6 weeks in-between the 5 day sessions). Despite the fact that I do not live in Dorset, the consultant kindly agreed to accept me for treatment. I must now wait for 3 months and then attend a consultant review of progress. Treatment is quick, painless and offers the chance to slow down or stop the progression of the disease. My local hand surgeon does not support this approach and the local authority would not provide treatment locally or fund the treatment in Dorset. Their decision was evidently based on the current lack of documented/proven clinical benefit of this approach. At my initial meeting with the Dorset based consultant responsible for the radiation treatment, I received assurance that should the radiation prove to be, ineffective long-term, or only partially successful, I could then go on to receive conventional surgery (without disadvantage). I see this as a real chance to completely avoid surgery (not so bad if it was a 'one time event' cure) and the near certainty of a repeat operation in a few years time. My advice, at the very early stages of diagnosis, is to press for and highlight, the potential radiation option (lots of published material in Germany) to GP's . If I can help anyone with a summary of experiences so far, I would be pleased to help.

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UK treatment of Dupytrens using radiation

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01/28/2009 18:40

myway53

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01/28/2009 18:40
myway53

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Re: UK treatment of Dupytrens using radiation

Thanks so much for the photo of your marked hand. I just developed some bumps on the webbed area between my thumb and forefinger and I see that area is marked on your photo. I had not previously seen any similar bumps and it was certainly worrying me. There's some comfort in sharing this affliction. I have an appointment with a radiologist next week and I just printed your hand photo.

Thanks for the continued sharing and I will post the results of my consults. I'm also seeing a hand doctor next week.
Regards,
Barbara
<blockquote><smallfont><p>Quote:</smallfont><hr>
Hi, Trev!

We just missed each other--I was down there on Monday for my follow-up.

Dr Goode still wants me to watch and wait because he still feels 34 is too young for radiotherapy.

I have another appointment in a year -- I feel better knowing I have someone familiar with the condition tracking my process.

I hope you feel better soon; Dr Goode as you know has a conservative approach, so if he recommended treatment for you I'm sure it's the right thing.

Hi Pixie

Shame that! I just missed you and missed Mary the week before, such is life

My time with Dr Goode has been very short so I've not been able to get to know him and form an opinion. Due to a bad RTA I suffered and related health issues I have always had real time to get to know and feel confident with my GP and consultants. This is certainly different, feels somewhat rushed and more impersonal. I've had my first 15Gy over the whole palm without too many problems apart from the crease near the thumb being red and a little sore (my hand was dry before we started because I'm so hard on it as it's the only one that I can use fully so some effect was more likely I suppose). It would be nice to be able to have another consultation to see whether another full 15Gy is needed or if such a large area still needs to be radiated? My visible problem area is in the palm below the small and ring finger with nodules possibly just starting on the second finger in the palm). My next visit is just to radiotherapy so IMO a further consultation is clearly not going to happen which is a shame really.

Just a reminder of my treatment area:(

I'm glad that you feel good about the advice that you're getting. You're trying to keep on top of it before it gets a hold. That has to be so important when you get it so young. Keep reading and learning.

Regards

Cambidgeshire, UK.
<hr></blockquote>

Edited 01/28/09 20:43

01/29/2009 02:18 newman
01/29/2009 02:18 newman	Re:Attention Trev. Information of downloading picture. Hi Trev.Australia calling Could you advise how you were able to download the photo of your hand onto the forum web page. Regards
01/29/2009 02:18 newman

01/29/2009 07:30 Wolfgang not registered
01/29/2009 07:30 Wolfgang not registered	pictures and posts Barry, you have 2 options: - if you have the picture available on some public server and know the path to it, you can include the picture in your post using the img command from the menu that appears when you write your post. Include the path in the img code and the picture will appear as in the above post. This works for every user. - if you are logged in as a registered user, you can also upload your picture from your PC to the forum server. It will then appear as appendix to your post. I know I ought to write a manual for the forum software .... the day will come. Wolfgang
01/29/2009 07:30 Wolfgang not registered

01/29/2009 10:29

TrevB

01/29/2009 10:29
TrevB

Images

Quote:

Hi Trev.Australia calling
Could you advise how you were able to download the photo of your hand onto the forum web page.
Regards

I use http://photobucket.com/ Barry although there are plenty of image hosting sites around to upload pictures from your PC onto. Then just copy the link attached to a particular image from your album on the image hosting site and insert the image into the post using the image command below the smilies and that link from the image hosting site (althought photobucket just requires a paste of the link). It's really easy.

ie This is the brilliant Knork for one handed eating:

Cambidgeshire, UK.

Edited 01/29/09 12:53

02/16/2009 16:36 Mary not registered
02/16/2009 16:36 Mary not registered	Re: UK treatment of Dupytrens using radiation Can anyone who has been treated at Poole tell me approx how long between initial consultation and beginning the treatment? I was seen initially in January and have heard nothing further so far on my treatment date. I am not worried, just curious as to how long I might have to wait?
02/16/2009 16:36 Mary not registered

02/17/2009 09:34 TrevB
02/17/2009 09:34 TrevB	Re: UK treatment of Dupytrens using radiation I'd just give someone at Poole a call (possibly the radiotherapy department/appointments or Dr Goode's secretary if that fails). Everything was quick and efficient for me so if you're a month waiting then make the call. Cambidgeshire, UK.
02/17/2009 09:34 TrevB

02/17/2009 09:41 philwaite
02/17/2009 09:41 philwaite	Re: UK treatment of Dupytrens using radiation Totally agree with Trev. Make a call - they will totally understand that you have been patient so far & would like to know what happens next & when.
02/17/2009 09:41 philwaite

03/03/2009 21:11 TrevB
03/03/2009 21:11 TrevB	Re: UK treatment of Dupytrens using radiation I'm two days into my second treatment. In the six weeks inbetween treatments there has definitely been some improvement. Although I had no contracture, my little finger especially was quite tight but now it and the ring finger seem to be independent once again with clearly defined knuckles. The biggest and most active looking nodule in the palm below my little finger has certainly shrunk. The nodules and cord in line with my ring finger don't look too different at the moment (maybe a touch flatter) but the base of the ring finger is certainly less bulbous and looks more like a normal finger I have had some dry skin but hopefully this will improve over time with constant moisturising. I have had some minor skin irritation, also with a small area looking like sunburn, on the thumb area and webbing between it and forefinger but that is ok at the moment. Whether this full week will irritate that area again we'll have to see? So fingers crossed that the good news continues One interesting point when I went to see my GP was that I reported a knuckle pad that has appeared on my left hand 2nd finger. I said that I suppose that that's just another unfortunate result of Dups? My GP said that he wasn't aware of a Dups link to knuckle pads Cambidgeshire, UK.
03/03/2009 21:11 TrevB

03/04/2009 01:02 myway53 not registered
03/04/2009 01:02 myway53 not registered	Re: UK treatment of Dupytrens using radiation Trevor, Thanks for the updates on your treatments. I'm so happy to hear that you are experiencing some improvements as a result of the treatments. My prayers and good wishes are with you for continued success and I look forward to hearing how you do at the end of the week. Regards, Barbara
03/04/2009 01:02 myway53 not registered

03/04/2009 08:44 Mary not registered
03/04/2009 08:44 Mary not registered	Re: UK treatment of Dupytrens using radiation Hi Trevor, glad to hear of your improvement. I still haven't had an appointment for my treatment to begin, I think I will email Dr Goode's secretary. I did ring her a couple of weeks ago and she said she would ring me back but haven't heard anything from her yet. I am in no hurry, I just want to make sure I haven't missed any post from them. Keep us informed on your progress won't you? Best Wishes Mary
03/04/2009 08:44 Mary not registered

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