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UK treatment of Dupytrens using radiation
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01/28/2009 18:40
myway53 
01/28/2009 18:40
myway53 
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 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 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 
          02/16/2009 16:36
          Mary 
          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?

            02/17/2009 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 09:41
              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.

                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.

                  03/04/2009 01:02
                  myway53 
                  03/04/2009 01:02
                  myway53 
                  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 08:44
                    Mary 
                    03/04/2009 08:44
                    Mary 
                    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

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