I had 5 days-3 gys per day-- of radiation therapy on each hand following the German protocol. This protocol calls for a possible additional round of RT in 6-10 weeks. I decided not to have an additional round on my right hand but weasn't sure what to do about my left hand. I consulted my RT doc this week and he suggested that I wait on another round in case "I really need it in the future." I tried to get him to explain this to me in a way I could understand but I didn't. Isn't the theory that RT either works or it doesn't and not that one can try it again down the road if DD gets more aggressive? I did decide to wait hoping that there will be more RT research in the next couple years.
"I had 5 days-3 gys per day-- of radiation therapy on each hand following the German protocol. This protocol calls for a possible additional round of RT in 6-10 weeks. " ____________________________________________________________
In November I had RT in LaJolla, with Dr. Tripuraneni...I received 20 gys total (2 gys per day over a two week/ten sessions period) on my left hand, and the same amount on my left foot....
In my foot, the two nodules got smaller... in my hand, half of the nodules are much softer, the other half is still the same, very hard...I was hoping the hand would continue to improve, but I think it improved as far as it will go.
Dr. T. says he can radiate again due to the low dosage used the first time. I might re-do RT on the remaining hard nodules on my left hand in March. If RT is suppose to stop the progression of Dups. I don't want to chance it and wait until there is a contracture when it would be too late for radiation.
RT can make a growing (proliferating) nodule to slow down its growth, in favorable cases even stop it for many years. It does not work preventive, i.e. it can't exclude that you get a new nodule sometimes later in the same or a close by area.
The total accumulated dose should not exceed 30 Gy in any specific area. That's just heuristical, not a hard limit, 35 Gy probably wouldn't make much of a difference but at the same time the overall guide line is to minimize the dose in any RT treatment in order to minimize the risk. So, if you have 15 Gy applied and have the impression that it stopped the disease you still can have another 15 Gy later should you either find out that it didn't stop it or should you get a new nodule in the same area.
To me that seems to make sense and I had been doing that myself in two RT areas. By the way, this kind of thinking is fairly new. In the past 30 Gy were the standard and initially some clinics had even experimented with 50 Gy. The research of Seegenschmiedt and others proved that 20 and 30 Gy don't make that much of a difference. Personally I believe that 15 Gy might do the job in many cases, too. Proving that is elaborate because you need to treat a sufficient amount of people and have follow up reviews of their development for several years. Not many clinics have the money to fund this.
By the way, that's one of the reasons why I don't believe in having RT after NA. Besides that, after NA there is no nodule to radiate and RT doesn't do much on cords because they are of different material.
Hi Australia Calling. In 2007 I visited Prof Seegenschmiedt in Essen Germany. I had numerous new nodules appear after a repeat surgery in my right Hand. I received a total of 15 Gy( 5 treatments of 3Gy.) I had a follow up visit 3 months later and the Prof. decided not to have any further treatment to my right hand. I believe the best is to have the treatment early when the nodules appear and are active.
I was treated with 1 course of 5 x 3 Gy on 5 consecutive days, with no second round of treatment back in 1999 and have had no progression since, so I guess if you are lucky a second round may not be necessary? The advice I was given at the time is that this treatment would probably be enough to stop the progression.
The Professor who has advised me over my treatment says that given I have had only one round of treatment there should be no concern, in terms of total radiation received, if I needed another round of radiation in future. This echoes 'newman's experience with Prof Seegenschmiedt. (My advice was from a different Professor - my story appears elsewhere on this site under 'Personal experiences')