Re: A New Boy on the DD Block .... with yet more questions ...
Thanks so much, Spanishbudda.
Can I ask at what age you first discovered DD? Was it late in the day like myself? Was yours rapidly progressing? I'm trying to figure out if mine is ... or is it my imagination? 'Tis a quandary.
Bless you for your kind concern and willingness to share. I am, I promise, deeply grateful.
Re: A New Boy on the DD Block .... with yet more questions ...
In my case several small nodules had disappeared by the time I went for the second round of the standard treatment, and the main cord in the finger which had already been treated with NA/PNF a year earlier and a nodule on it shrunk noticeably in size. However I still have tension on that finger and slight contracture in the evening until I wear my splint glove overnight and it is straight again in the morning. I hope the RT has halted progression for a long time, but only time will tell.
The side effects were limited to some skin peeling week 4 and 5 after the first round as the treated skin renewed on the surface. After the second round there was almost no peeling and I haven't any lasting negative effect.
I was diagnosed with a first nodule at 44, had my pinky bend and treated at 52 and am now turning 54. My left hand seems to be about 8 years behind my right hand, only that this time I won't let that other pinky bend.
Re: A New Boy on the DD Block .... with yet more questions ...
I wouldn't think a weekend in between makes much of a difference. As John Glees already indicated, the total dose is the key.
I did not have a second, repeated RT at this finger because I wanted to avoid excessive irradiation. Instead, my finger bent ... but not a big problem, I can live with it.
Wolfgang
meunier:... Would this not incur a negative result by what you call fractioning? Or perhaps I misunderstand. Is it that the same strength of Gy was applied over those days over the two week term that is key here?
One other question - on the one occasion where the initial RT treatment did not halt the nodule were you able to have an additional round? If so did that work? In terms of risk that does that additional round merely increase your risk from say the proverbial one to two percent in terms of exposure for further risk? Perhaps that is why they call this exposure 'superficial'.
Re: A New Boy on the DD Block .... with yet more questions ...
I think I will pitch for RT on my left hand - as it is the one with the one nodule (still in tomato format happily and therefore prime for what Prof S terms 'remission') and a small associated dimpling. Neither was active certainly two months ago so it is nothing if not current (i.e., within the last six months).. Hopefully this will make me a good candidate. My right hand at the moment could all but pass for being clear so - for the moment - it is, as Spanishbudda so kindly suggests - a candidate for 'wait and see' ... but as soon as I do SEE you can bet your bottom (or top) dollar I will be getting in on the RT ground floor in order that I might achieve the best results for that hand too.
I was just wondering about stories of people for whom RT did not work. (The vast majority on various forums seem to understandably be from people who have achieved considerable success.) There was, of course, Wolfgang's one digit - but one out of eight less successful RT sessions - appears a brilliant run of luck to me and another chap in Scotland that Dr. Glees said felt that the procedure was 'a waste of money' but on comparing photos had to say it had made something of a positive difference. The only other item I've seen in this regard was a story - was it on the personal experiences here?- of someone who went to Prof S - was treated - and then had complications. Apparently he wrote to Prof S - and then called being promised a reply by a staff person - and then sent him another email but never heard back from anyone. If I remember correctly he settled for a more surgical approach again in Germany ... for which all I remember is that he had to pay cash. (That is all my memory currently recalls.) Does anyone else know of anyone else for whom the RT procedure really did not work out? It would be good to know lest there are factors that - certainly I - have overlooked and would be much appreciative to learn from.
Re: A New Boy on the DD Block .... with yet more questions ...
User 'callie' on here reports that it did not work for her. I think that for approx 15% it does not help. I don't think we know why. The Prof in Hamburg does a palpation examination, and also a scoring system based on a health questionnaire, before deciding whether to perform RT or not. So it's not all just in the hands, but timing of course, and other risk factors.
In my own case I have had both hands done. I was as previously stated, sceptical whether it had worked the first time, but after 18 months it was fine, and now 4+ years still ok. The other hand was more of an immediate success after treatment, but last year I injured the hand using tools for plumbing, and in the irradiated field I have 3 new sore nodules threatening to form a cord. So it worked for existing disease at the time, but did not prevent something new occurring. I'm waiting to see what it does. I may ask to see if I can have the last chance half treatment regime since this hand already has a different disability and I need to keep it functional. Otherwise I will let it contract and see where it gets to before having NA or Xiaflex. Just need to manage it and get on with things.
Re: A New Boy on the DD Block .... with yet more questions ...
Bless you, Spanishbudda.
When you say it was an 'immediate success' - the second one - which IS GRAND - was that after the first or the second week of treatment? (I will guess it was after the second when everything was completed.) Had you noticed a significant change for the better in the waiting interim? Just curious ... If so, at what juncture did you find that happy relief?
I so admire your courageous attitude. An inspiration.
Re: A New Boy on the DD Block .... with yet more questions ...
meunier:Bless you, Spanishbudda.
When you say it was an 'immediate success' - the second one - which IS GRAND - was that after the first or the second week of treatment? (I will guess it was after the second when everything was completed.) Had you noticed a significant change for the better in the waiting interim? Just curious ... If so, at what juncture did you find that happy relief?
I so admire your courageous attitude. An inspiration.
In fact just like many people report, in the interim period it was worse. The nodules appeared inflamed, angry, sore. Others have reported similar immediately after the first round of 5 days. It usually settles down after a few weeks often before the second round. That's what happened with me, and after the second round the previous soreness that existed before all treatment just slipped away.
Re: A New Boy on the DD Block .... with yet more questions ...
Dear Spanishbuddha,
Bless you. You are so kind as ever.
THIS IS SUCH VALUABLE INFORMATION. What a wonderful public service this Forum is. How are people to know otherwise what to expect? Such knowledge as your generous item above surely can but aid in people's recovery as it will surely give them certain peace of mind which is as good methinks as any other healing balm on the current market in terms of their overall recovery from/effective maintenance of Dupuytren's onslaughts. This is especially potent when you consider that (as reported) one in six European men over the age of 65 have at least some semblance of Dupuytren's Disease. The totality of that number - baring an enormous disaster, natural or otherwise - is only set to rise.
Re: A New Boy on the DD Block .... with yet more questions ...
This is probably going to sound absurd. In fact it probably is. I have work to do and at the moment I'm distracted by DD .. or the prospect of such. More fool I probably.
Dr. Glees said I 'could' have RT on my right hand (as well as my left which definitely has a nodule (a small lump) which is tender when you palpitate it.) Still he said - of the right: 'it is faint, isn't it'? To be perfectly honest, if it hadn't been for finding the small lump on my left hand and dashing to the internet in February and first finding out about DD I would never have found the two little pads (like calluses) that currently live at the bottom of my ring finger and pinky; one below each; a matching pair of a kind. Otherwise my palm - for all I know - looks like that expected of any other normal 60 year old male of Caucasian extraction. (I know, I know: What's normal?) Neither of the aforementioned small patches are (a) growing above the skin line yet (otherwise I would have noticed them I'm sure before) or (b) tender to the touch when pressed. They in fact could have been there for ages for all I know. They are not in fact even discoloured in any way - even when pressed.
I am petrified of a contracture. Can I ask - in order for that - i.e., the contracture - to happen - you would have to have had a cord of some description wouldn't you? I mean there would have to be some indication further down in the palm - a nodule perhaps - something above the skin line - would there not? I have done the table test lifting each digit into the air individually and each happily has a good range. No problem there. It was the fact I think that the possibility of RT was thrown back into my court - and I am the first to say I'm CERTAINLY not an authority - that has made me doubt (i.e., - most especially myself).
I will attach a picture of my palm. I don't really see anything myself ... (am I blind?) ... short of what my imagination - or what I perceive THAT to be ... is capable of drawing - which I fear can be colourful in the extreme. (Professionally, of course, that serves me well. Personally - especially when alone - it can be an absolute bloody nightmare.) Cue pacing up and down.
Sorry to trouble you .... it's just I'm in a spin ... and you have so much more experience than me in these matters.
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