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Advice please re. RT for Dupuytrens, & the rest
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02/01/18 15:26
scumble 
02/01/18 15:26
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

I forgot to mention that RT isn't administered at the weekends, I was also told today. So if I go for the 7-day protocol it will be divided into a run of five days followed by a break of two days and then resumed for two days. But I infer from what I've seen and read here (Dr. S's recommendations etc.) that there should be no breaks during either the single 7-day protocol or in the separate 5-day phases of the 10-day protocol. In other words, if I can't have RT at the weekends, then it has to be the two phases of 5 days at 15gy and each must start on a Monday. I know it may seem common sense, but I refer again to my circumstance of living in a country very unlike Germany or the UK. Could anyone confirm that my supposition about not breaking the run of 5 or 7 days is correct?

02/01/18 16:08
wach 

Administrator

02/01/18 16:08
wach 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

Even Seegenschmiedt would not have worked on weekends. The 7x3 schedule was mainly for patients who came a long distance and therefore did prefer not to split the treatment in two blocks. Actually I don't think that Prof. Seegenschmiedt is doing the 7x3 anymore.

Wolfgang

02/02/18 05:24
scumble 
02/02/18 05:24
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

wach:
Even Seegenschmiedt would not have worked on weekends. The 7x3 schedule was mainly for patients who came a long distance and therefore did prefer not to split the treatment in two blocks. Actually I don't think that Prof. Seegenschmiedt is doing the 7x3 anymore.

Wolfgang
Thank you very much, Dr. Wach, for dealing with that. I must say again how grateful I am for the guidance I've received here. I am also able to assist the Korean doctors with their research. I can see clearly how to proceed, and will report on progress.

02/08/18 16:30
scumble 
02/08/18 16:30
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

I'm now undergoing the first series of 5 x 3gy and the second will follow in 10-12 weeks. But, as I said at the start of this long thread, I have both DD & LD, treated simultaneously. When the first series is complete, I will have had 15gy in both hand and foot; that is, 30gy over five days, divided between two sites. When the second series is over the total dose absorbed will have been 60gy.

Stefan_K for example appears to have had the protocol three times in three years. But I am wondering about instances like mine where two discrete sites are given RT concurrently, and the general dose over the term of a single treatment is thereby doubled. I've so far failed to bring this up with the oncologist, but suppose he would refuse the procedure if he considered it unsafe. May I just ask if others have had two areas irradiated at once, and whether there could be any appreciable increase in risk? I apologize if this question has been addressed elsewhere but I'm not sure it has.

There also remains the confusion about the CT scan I was obliged to have, to which Dr. Wach attributes a 'considerable' dose, while technicians here tell me it amounts to 0.006gy. Even if I take their word and it is not considerable, it takes the total towards 61gy. (As for the usual side effects from 30gy, I am quite prepared for those).

I hope that the exchanges on this thread are of some interest or benefit to others and not only myself.

02/08/18 17:08
wach 

Administrator

02/08/18 17:08
wach 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

Hi scumble,

may I comment on some of your calculations?

1. The rule of a maximum of 30 Gy refers to irradiation in the same area. If other areas, e.g. your feet, are additionally irradiated the risks for side effects add up but you will not have 60 Gy in the same area.

2. Gy (Gray) as unit is defined as the absorption of one joule of radiation energy per kilogram of matter https://en.wikipedia.org/wiki/Gray_(unit) . The actually absorbed total dose depends on how much tissue is irradiated. The larger the area and the bigger the amount of tissue is irradiated the bigger is the total absorbed energy. If the whole body would be irradiated with 30 Gy this would be lethal. Fortunately. for treating MD/ML only small amounts of tissue are irradiated and the hand and foot are not very radiation sensitive.

3. It is true that CT has an absorged energy in the order of mGy. Again, it depends how much tissue is irradiated. A full body CT obviously is dangerous, a very selective CT of only a part of the hand would not add much to your absorbed dose. If the CTed area and the later irradiated Dupuytren area are identical, you total absorbed dose in this area would be 30 +0,006 = 30,006 Gy.

Wolfgang

02/09/18 04:14
scumble 
02/09/18 04:14
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

wach:
Hi scumble,

may I comment on some of your calculations?

1. The rule of a maximum of 30 Gy refers to irradiation in the same area. If other areas, e.g. your feet, are additionally irradiated the risks for side effects add up but you will not have 60 Gy in the same area.

2. Gy (Gray) as unit is defined as the absorption of one joule of radiation energy per kilogram of matter https://en.wikipedia.org/wiki/Gray_(unit) . The actually absorbed total dose depends on how much tissue is irradiated. The larger the area and the bigger the amount of tissue is irradiated the bigger is the total absorbed energy. If the whole body would be irradiated with 30 Gy this would be lethal. Fortunately. for treating MD/ML only small amounts of tissue are irradiated and the hand and foot are not very radiation sensitive.

3. It is true that CT has an absorged energy in the order of mGy. Again, it depends how much tissue is irradiated. A full body CT obviously is dangerous, a very selective CT of only a part of the hand would not add much to your absorbed dose. If the CTed area and the later irradiated Dupuytren area are identical, you total absorbed dose in this area would be 30 +0,006 = 30,006 Gy.

Wolfgang
I see. The gray is a measurement of the capacity to be absorbed, not a simple measure of energy itself. Thank you Wolfgang for setting out these points very clearly.

02/16/18 14:47
scumble 
02/16/18 14:47
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

The first phase of RT @ 15 x 3gy is over and the second follows in 11 weeks. I'll post any further observations. Meanwhile I'm deciding on a specialist to consult during my summer trip to Europe, particularly regarding the finger contracture (30° from the PIP joint upwards) which was not included in RT. I have to schedule a consultation and any requisite follow-up appointments within my itinerary. I wonder if anyone with experience of PNF/NA would be good enough to tell me how many appointments are involved in the procedure, in addition to the initial consultation, and over how many weeks.

Some indication of cost would also be helpful. Dr. Werker in Groningen has suggested something under 300 Euros. My impression is that UK prices for all treatment options seem about double what they are elsewhere in Europe.

Of course whichever specialist I choose may not find indication for PNF, or anything else. I doubt that at this stage I'm a candidate for fasciectomy, though I may be wrong. I have to make contingency arrangements. On the whole it is difficult to get answers from doctors to hypothetical questions. So I would be grateful for comments. Thank you.

02/16/18 15:30
wach 

Administrator

02/16/18 15:30
wach 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

I myself had NA about 2 years ago. It was done on a Monday morning, took about 1/2 hour alltogether, and I boarded a plane home in the afternoon. I took off the bandage the next day and the plaster the day after. That was it, no further consultations, no pain medication. Prior to the NA I had one visit to the doctor to show my finger (45 degree in the PIP joint of the little finger) but I know of several cases where all was done in one visit. Yet there is no guarantee for that, so you should at least plan für two visits. And you might consider sending a picture of your finger to the doctor when planning your trip.

Wolfgang

02/16/18 20:37
Stefan_K. 
02/16/18 20:37
Stefan_K. 

Re: Advice please re. RT for Dupuytrens, & the rest

If you like Paris you can get your finger straightened at Lariboisière hospital like me in 15 minutes in one appointment for around 100 Euros. I recommend wearing a splint glove at night after that. The doctor may not mention that to you.

Stef

[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

02/17/18 16:26
scumble 
02/17/18 16:26
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

Much obliged for this and I will do as you advise. Now I see that NA is quite a different procedure to Xiapex.

Incidentally, to return to the subject of radiotherapy, Dr. Werker at the University of Groningen Hospital maintains that, for Dupuytrens, the Seegenschmiedt research is not convincing since 'it lacks proper control groups.' He regards RT more favourably for Ledderhose disease. Their oncology unit is currently holding trials. So while Prof. Seegenschmiedt's advocacy is certainly persuasive, it apparently is not unanimous. I thought I would post this as it came up, and I trust Dr. W. will not mind.

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