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Specialist in Brisbane
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05/15/2011 14:30
newman 
05/15/2011 14:30
newman 

Re: Specialist in Brisbane

Australia Calling, Hi Alanm nice to see you back on line. You can forget the Surgeons unless it is for NA. Most do not have experience with RT. only seeing results in the treatment of keloids. I found Dr Borg an Oncologist in Adelaide had an interest in the treatment of Non Malignant diseases and had treated patients for Heel Spur ,Dupuytren and Ledderhose using the Protocol used by Prof. Seegenschmiedt. In 07 I went to Germany to Prof. Seegenschmiedt and my Surgeon advised that I should expect having holes burnt through my hands as the result of RT. Quite frankly even most GP's have no idea. I've had 4 grafts on my hands and one medico looked at my grafts and asked if the graft areas were the result of RT. As I stated most surgeons are only are aware of what is happening in their own field of medicine. Regards

Edited 05/15/11 19:56

05/30/2011 07:16
crt 
05/30/2011 07:16
crt 
Re: Specialist in Brisbane

Hi Alanm,

My limited experience says that if you are to do RT, then it is advantageous to do it early. I have had 3 treatments of RT.

The first I left a bit late and the lump and contraction of my finger was significant. The the lump and contraction are both slightly worse now, but stable for the last couple of years (you cannot know for sure whether the Dupuytren's just coincidently paused or it was the RT).

I have had two more RT sessions on small lumps that have shrunk in size to be so small I have stopped neurotically checking their size.

I consulted David Hunter-Smith regarding the wisdom of RT. Without wanting to speak for him, he seemed unconcerned with the prospect of RT. To him it was more important to slow down the RT and delay any more intrusive treatment option (although he was hoping that Xiaflex would become available in Australia to be used as alternative option to NA/Surgery).

Regards, Chris

06/07/2011 01:14
stephenp 
06/07/2011 01:14
stephenp 
Re: Specialist in Brisbane

I am commencing RT via Dr David Schlect at Premion (Wesley Medical Centre) next week. I have decided to proceed with this as the disease has been more active over the last month or so with increasing tingling, numbness, aching hand, nodules but no contraction. He has treated several other patients recently. I will let you know how it goes.

06/07/2011 02:44
flojo 
06/07/2011 02:44
flojo 
Re: Specialist in Brisbane

From what you describe, it seems like your timing for RT is perfect.
Good luck!

07/17/2011 22:26
stephenp 
07/17/2011 22:26
stephenp 
Re: Specialist in Brisbane

Dr David Schlect at Premion (Wesley Medical Centre, Brisbane) agreed that at my stage of progression I was a good candidate for RT. I am a 58 yr old male and have cords and nodules in the left hand with no contractions. The disease has been relatively stable for several years (maybe 5) but had become more active over the last few months with increasing tightness, aching, tingling and numbness in one finger. When stretching my hand straight or reaching for something I frequently got an acute short pain shooting up the affected finger. My father had severe contraction of the same finger and my older brother has DD.
I decided to seek RT after realising that surgery is highly likely to provide temporary relief, with a high chance of recurrence whereas, according to recent literature reports, RT if given prior to any contraction has a higher chance of stopping progression and at best even reversing the disease. I had some concerns over RT and a potential increase in cancer risk. However, given my age and the relatively low number of X-rays I have had in my life and the risks associated with surgery, on balance I felt comfortable with my decision.
We decided on treatment for 2 blocks of 5 daily treatments at 3 Gy/treatment, 6 weeks apart. Dr Schlect could not see any particular reason for splitting the treatment other than this is what appears to have worked in the European setting.
The first treatment was on 15th of June and was quite quick and painless with most time spent in setting it up. Subsequent treatments were on the 16th, 17th, 20th and 21st June 2011. Treatment was given lying down with my hand immobilised and flat and lasted for about one minute. The treatment area was traced out on my hand each time based on a transparency prepared in a planning visit. A 3mm thick piece of wax was placed on my hand to optimise beam penetration to just below the skin surface. Treatment was given with a Varian Truebeam machine. This is a different machine from that described in the publications from Germany but one that is routinely used for cancer RT. As I understand, the beam from this machine will not pass right through the hand.
By the 4th treatment, I think there was less tightness but it is hard to be sure. Pain associated with stretching out my hand appeared to have diminished but again it is hard to be certain. There were no other effects on the cords, nodules or numbness. There were no skin problems at this time.
It is now about 4 weeks post-treatment. I do not think that there has been any change to the cords or nodules. The numbness may have diminished slightly. There is no more pain associated with stretching my hand and there is definitely less tightness. There have been no skin problems. I aim to start the second round of treatment in a few weeks time.
After listening to several seminars on DD and reading around the topic it is interesting to speculate on why this works. I suspect that fibroblasts are malfunctioning and laying down collagen in an inappropriate fashion. These cells most likely release signals that trigger adjacent cells to also produce collagen. Perhaps there may also be cell division although if this is the case it must be very slow. The cells must also be relatively non-motile or not function in the same way away from the immediate location; which is unusual for fibroblasts. RT will tend to affect the more active cells. Hence the malfunctioning cells and their neighbours will be susceptible to radiation and are likely to die. As there seemed to be a rapid effect, there may also be a direct affect on the collagen but it is a little hard to imagine a mechanism by which RT would affect collagen that has already been laid down.
I will provide a further update after the second round of treatment.
Stephen

07/18/2011 11:03
spanishbuddha 

Administrator

07/18/2011 11:03
spanishbuddha 

Administrator

Re: Specialist in Brisbane

Thanks for sharing the info stephenp and best wishes for a good outcome.

I've just had RT in Germany on one hand and have to say the juries still out, but I'm hopeful.

07/18/2011 13:36
lori 
07/18/2011 13:36
lori 
Re: Specialist in Brisbane

Great step-by-step explanation. I did not see any great improvement until after my 2nd round of RT. I saw the greatest changes about 1 month after the 2nd round and it continued to improve over the next year. The most noticable change was the disappearance of the nodule, regression of the cord into my palm, being able to flex my hand, and clinch my fist without pain or stiffness.

Good luck and take pictures of your hand so you can see if changes occur.

Lori

08/26/2011 02:41
stephenp 
08/26/2011 02:41
stephenp 
Re: Specialist in Brisbane

An update on RT treatment

I commenced the second round of 5 treatments on August 1st 2011. Treatment was identical to the first round and completed on Friday 5th August.

After the second treatment, I noticed some changes in feeling in the treated hand with an occasional dull ache apparent that I had not noticed before. This became more pronounced after the 3rd and 4th treatment with increased tingling in and around the treated area extending into the affected finger which was not treated.

Intermittent aching continued into the following week. A very small patch of dry skin developed in the middle of the treated area so I increased the use of moisturiser. At 2 weeks after the second set of treatment I felt that both the nodules and cords were softer and smaller although it is impossible to be objective.

At three weeks post treatment, the main nodule and cord are very clearly getting flatter. The numbness in the finger remains unchanged. There are variable minor aches in the treated hand and joints of the treated finger. The skin in the treated area remains darker and dryer than the surrounding skin but is well controlled using moisturiser.

08/26/2011 06:11
spanishbuddha 

Administrator

08/26/2011 06:11
spanishbuddha 

Administrator

Re: Specialist in Brisbane

I'm 3 months after the second round of RT in Germany. I had the dry skin but that's mostly cleared. I do have aches and some pain in the palm especially when making a fist. I don't notice any obvious softening or reduction in nodules or cords. I do compare against photo's taken before treatment and think that any apparent reductions in my case are due to a change in the skin tone. Still hoping that once it's settled down the DD will be dormant.

08/26/2011 23:36
Cyclist 
08/26/2011 23:36
Cyclist 

Re: Specialist in Brisbane

hi Stephen
Good to hear a good outcome with treatment here in Australia. I had treatment in Germany for LD, and am putting some $$ aside in case I need treatment for DD in the future and often wonder if I'll feel I should to travel to Germany next time (dependent on my confidence in treatment outcomes here). At this stage it's just my feet that are affected, but I'm mindful of the high probability that my hands might also be affected in the future.

Interestingly Dr Borg in Adelaide (listed on this website) also separates the two treatments by 6 weeks, rather than the 12 weeks break in Germany.

I'd be interested in hearing about your continuing recovery from your Aust treatment
Cheers
Di

stephenp:
An update on RT treatment

I commenced the second round of 5 treatments on August 1st 2011. Treatment was identical to the first round and completed on Friday 5th August.

After the second treatment, I noticed some changes in feeling in the treated hand with an occasional dull ache apparent that I had not noticed before. This became more pronounced after the 3rd and 4th treatment with increased tingling in and around the treated area extending into the affected finger which was not treated.

Intermittent aching continued into the following week. A very small patch of dry skin developed in the middle of the treated area so I increased the use of moisturiser. At 2 weeks after the second set of treatment I felt that both the nodules and cords were softer and smaller although it is impossible to be objective.

At three weeks post treatment, the main nodule and cord are very clearly getting flatter. The numbness in the finger remains unchanged. There are variable minor aches in the treated hand and joints of the treated finger. The skin in the treated area remains darker and dryer than the surrounding skin but is well controlled using moisturiser.


Edited 08/27/11 02:38

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