The most recent long-term data on RT have been published as chapter 44 in C Eaton, MH Seegenschmiedt, A Bayat, G Gabbiani, P Werker, W Wach "Dupuytren’s Disease and Related Hyperproliferative Disorders" Springer, 2012. Abstract: http://www.springerlink.com/content/m25w532366371juh/. Follow-up was up to 13 years (mean 8.5 years) and compared three groups: 30 Gy, 21 Gy and an untreated control group. "The progression rate in the control group (62% ...) as compared to RT groups (21 Gy: 24% ...; 30 Gy: 19.5% ...) was significantly higher (p < 0.0001)."
That clearly shows that RT is able to stop disease progression but it also shows that it is not working 100%. Even with 30 Gy still 19.5% of the treated patients showed progression though their progression was probably slower.
Wolfgang
flojo:Stephen, There have been randomized studies about the effectiveness of the various protocols in delivering RT. I'm not sure that it has been a treatment long enough to show the results you are asking about. I do agree that we need more research about all treatments and the long term effects.
I wrote a post about 2 weeks ago about the possibility of using the posts on this Forum for research. There is a wealth of information right here.
Anthony, We stayed in St. Paulie both times. The first time @ the Holiday Inn Express, it was clean, very small but nice room, moderatly priced. Second time @ the East, awesome hotel, large room, super nice, very funky, chic hotel with a cool bar that was hopping most every night, but a little pricey. We paid 1000 Euro for six nights, but the difference in the hotels was well worth it. St. Paulie is the heart of the nightlife in Hamburg, lots of good resturants and pubs within easy walking distance. The food over there is AWESOME! However, it takes about 45 minutes to get from St. Paulie to the clinic on the U Bahn. If you decide to stay there, I will be happy to give you the proper train route. Hamburg is a beautiful city and not once did we feel unsafe anywhere.
I am from US (Texas). We did not do a layover anywhere, the London to Dallas flight was ten hours which nearly killed me. I can't imagine the flight from Australlia!! I would say definitely do the stopover in Daubi.
If there is anything else, please ask. So many good people have helped me on this site, I am happy to return the favor!
I stayed at the mercure....... 4 star hotel.......I did nt book through them......I did a search on the net to get the best price......350 euros for 5 nights.......there is a free pick up from the airport.......a 5 min drive to the hotel......and being the closest hotel to the clinic a 12 min walk for treatment........a very good breakfast for just 14 euros......I treated this like an evening meal!!!!!........I will stay there again for my next holiday.......very convenient.....
Gazza Anthony, We stayed in St. Paulie both times. The first time @ the Holiday Inn Express, it was clean, very..... small but nice room, moderatly priced. Second time @ the East, awesome hotel, large room, super nice, very funky, chic hotel with a cool bar that was hopping most every night, but a little pricey. We paid 1000 Euro for six nights, but the difference in the hotels was well worth it. St. Paulie is the heart of the nightlife in Hamburg, lots of good resturants and pubs within easy walking distance. The food over there is AWESOME! However, it takes about 45 minutes to get from St. Paulie to the clinic on the U Bahn. If you decide to stay there, I will be happy to give you the proper train route. Hamburg is a beautiful city and not once did we feel unsafe anywhere.
I am from US (Texas). We did not do a layover anywhere, the London to Dallas flight was ten hours which nearly killed me. I can't imagine the flight from Australlia!! I would say definitely do the stopover in Daubi.
If there is anything else, please ask. So many good people have helped me on this site, I am happy to return the favor!
Hi Anthony In case you're considering Emerites, you are probably aware they provide a free night's accommodation in Dubai enroute to Frankfurt, because they can't justify the forced layover from Australia. One thing to note though they are cheap, they don't provide frequent flyer points. Also, it's a good idea to build in an additional day as it's tiring because you have to go through customs, find your way to the bus, then queue at the hotel, which by the time I got there was about 1:00am on my clock
It's also worth noting that if you don't linger for an extra day, make sure you book your luggage direct to Frankfurt and have what you need in your hand luggage so you don't have to wait at the baggage area for your luggage and cart it over to the hotel like I did ! Di
Anthony:Hi Michael Thanks for your support. Great to hear all seems to have gone well so far for you. No need to pack the sunscreen eh!!!! What the hell happened 46 years ago!!!!
Where are you from Michael? Any recommendations for a decent (and cheap) hotel? Where did you stay? Did you do a stopover on the way? I'm thinking about doing a day in Dubai for a look on the way back. Might help break up that long haul flight.
Emirates also offers fairly priced stop-over packages where you can stay several nights, select the hotel and book tours as well. In April last year I used such a package to stay 3 days in Dubai. I thought it was well worth the money spent. Dubai is a crazy and impressive town, especially if you consider that 50 years ago there was close to nothing.
Hi I would suggest that should you bring your laptop along ,download some credit on Skype to make phone calls . Check most hotels provide Wlan Wfii at no cost. Calls to Australia only a few cent a minute, whereas my mobile costs on International Roaming is 85cents a minute to receive and $5 a minute to call. It can be very cold in Hamburg. Today in Garmisch -Partenkichen Bayen is minus 6 degree C and minus 10C at night . Regards
I have seen Dr Harper in Perth and has had some experience in RT for DD.
He is keen to do more to build up more data.
He charged $160 for 20 minutes and said my nodules were to big and advanced to work on so I had the op.
He did not seem that fussed by my age, 44. My surgeon said I was far to young for RT.
I was sure I had posted this yesterday but it does not seem to appear anywhere?
There was nuclear testing in Australia from 1955-1963 I believe at Maralinga SA. Considering we had smoke in Geraldton from fires 900ks away last week I'd guess anything is possible.
I've been to Hamburg to see Prof Seegenscmiedt. Great place for a visit. Had both hands and both feet looked at but he did not treat the right hand as the progression was too far and he said eventual surgery could not be prevented.
He did say RT was an option after surgery if the nodules and cord returned (very likely).
Interesting that a Radiation Oncologist in Brisbane said he would do the initial RT but he hardly did any palpitations or assessment so it would have been a completely different size and zone that would have been done compared to Germany. Pretty sure the Brisbane Doc would have done the right hand , but much smaller sections of the left and feet (compared to Germany). He did agree to do the second round of treatment back in Brisbane rather than go all the way back to Hamburg. I am yet to have a meeting with him to assess whether his equipment, lead plates etc will be appropriate. Could be a good bit of inservicing for him to follow Prof. S's directions in some treatment.
Prof S was ok with the idea. He suggested he would entertain the idea of visiting Australia if we could get a group of practitioners that might want to learn from his experiences. We talked about the idea of having a significant number of patient that would be prepared to be assessed by these practitioners under the supervision of Seegenscmiedt while he explained his processes and treatment. If we could help organise this it would certainly promote and improve the treatment options in Australia.
While in Germany Prof S discovered a significant number of extra nodules and cords that I thought were other medical issues such as arthritis or "bunyins'. These photos do not include about 5 areas on the feet that he did not draw as they were outside designated treatment areas. As you can imagine, I am quite shocked by the expansion of my disease and the long term prognosis. To me, RT seems like my only option to try and arrest the progression. Anthony
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