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radiotherapy and later NA or Xiaflex?
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01/19/2015 01:18
Molloy 
01/19/2015 01:18
Molloy 
radiotherapy and later NA or Xiaflex?

Hi all,
Have just been diagnosed, after appearance of large nodule in left palm. I intend to have a steroid shot in a few weeks, then will look into possibility of radiotherapy, though it looks from what I've gathered on this site that it may be a struggle to find a competent provider and get my insurance to pay for it.

What I'm wondering is if there are people here who have had radiotherapy and later been told that additional NA or collagenase was not possible because of effects of the radiation? I'd like to have as much information as possible regarding the best possible way to set out possible treatments, with surgery a distant and final option. Radiation, then NA and as much additional NA as needed is what I'm currently thinking. I was told by a hand surgeon recently that the jury is still out on whether or not the Xiaflex might make full surgery later more difficult or even impossible, as it's not all that clear what the hand will look like under the skin after collagenase has done its work. Any insights on that? Anyone who has done Xiaflex and subsequent surgery?

thanks a million in advance, this site is a real resource, incredibly thankful I found it,
Molloy

01/19/2015 09:55
Seph 
01/19/2015 09:55
Seph 

Re: radiotherapy and later NA or Xiaflex?

Molloy; The one option you don't seem to have considered is - Do Nothing[i][/i]. I don't think you have said how old you are but if you are 50 plus then this may be the end of it - one nodule. If you are sub 30 then you are in for a lifetime so go slow. You will end up with lots of treatment and nothing seems to work. All treatments seem to mean delay not cure.

Most important message. This is the good cancer - you don't die from it. It is inconvenient and a problem form time to time but beats all the other options.


Seph

01/19/2015 16:54
spanishbuddha 

Administrator

01/19/2015 16:54
spanishbuddha 

Administrator

Re: radiotherapy and later NA or Xiaflex?

I agree with Seph but would modify 'do nothing' into 'watch, wait, research, plan'. Seems like you are doing the last two. You can do the first two as well by keeping a record with photos and notes of signs and symptoms. That way you up end up with objective data on the rate of progression, or otherwise, and possibly correlation with activities that make it better or worse.

Why are you having a steroid shot? Nothing wrong with that, but what has led you to believe you should have one right now? No need to answer here, but the decision should be based on something objectively tangible.

01/19/2015 21:56
Molloy 
01/19/2015 21:56
Molloy 
Re: radiotherapy and later NA or Xiaflex?

Seph and SpanishBuddha,
Thanks very much for these helpful comments. I am indeed keeping a visual and textual record of things so I can keep on top of the situation as much as possible. Probably more meticulous than needed at this point--photos every several days, with more or less daily account of changes in symptoms.

From what I've read, steroid shot has at least a chance of slowing progression at least somewhat, and one of the doctors I spoke with said it might help with sensitivity of the nodule (left hand aches more or less constantly and nodule is quite sensitive to touch). I know it can't stop or cure, but the risks would seem few enough that I think it might be worth a try. Do you know if there are other factors I should be considering here? I know too that you can apparently get steroid injection in conjunction later with NA with some likelihood of enhancing the benefits of NA and time before recurrence.

As for radiotherapy, this is still quite less than a straightforward issue for me because some of the reaction I've gotten from hand surgeons here in US is of the 'are you crazy?' persuasion, while I've read some of the research on this (mostly from Germany) and it looks quite impressive in terms of outcomes for those who do radiotherapy early. I know enough about medical expertise to realize how insulated and professionally and nationally chauvinistic medical professionals can be, so I try to be critical of what any particular doctor or other medical expert tells me.

I do admit though that I am still unsure about the radiotherapy. But I would hate to get several years down the line and find that the medical community here in US has come around on this issue, when it's too late for me to catch my disease at the early, proliferative point, before contracture, at which radiotherapy has best chance to be effective in slowing or stalling progression.

I'm almost 50, so only minimally worried about risk of radiation effects two decades or more from now, and rather more worried that my case might be aggressive enough that in the two or more decades I hope to have left on the planet it could lead to a prolonged period of my life with a significant disability (I use my hands significantly at work, and am also an amateur pianist). In only a month, my nodule has grown a good deal in size and a slight cord has become visible, and I'm already feeling tightness and slight pain when I try to extend the fingers of my left hand. I can do the flat palm test, but I feel the pressure and tightness in my palm very distinctly when I press it down flat on the table. Still early to know how fast it'll go, yes, and I will continue to monitor, but at this point it does not feel to me like the kind of scenarios I've heard about that take years and years to progress to contracture. Or have others had similar experiences?

I'd be more than content to avoid radiotherapy and just monitor and wait, as you both suggest, if I had some grounded sense that what I have is going to be amenable to effective management down the road with NA, collagen, surgery. But I gather that for aggressive cases at least sometimes none of that is effective, and severe contracture happens anyway. In such a case, I'd like to at least have the reassurance that I tried all reasonable means to stave that off.

Have another appointment with hand surgeon in a few weeks, am hoping that he can give me better information on how to understand the rate of my progression--last guy I saw just shrugged his shoulders and said essentially 'no way to know' and wasn't interested in looking at my visual evidence of the changes in only a few weeks.

Seph, you are absolutely right--much better to have this than, say, stage 3 or 4 pancreatic cancer. But I don't know if I'd take an incurable disease like this one with such a potential to significantly negatively affect my life for decades to come over, say, a hundred other varieties of cancer that are found at early stages and more or less completely curable. Lots of cases of such cancer never recur, and people live the rest of their lives with no symptoms. Maybe it's just the fact that I've just been diagnosed, and I need time to integrate this into my life, but I sure don't like the 'no cure' part of Dupuytren's much at all right at the moment...

thanks again for your responses, it means a great deal to be able to get info from people like you who have years or even decades living with the thing,
Molloy

01/19/2015 23:30
BRIANB 
01/19/2015 23:30
BRIANB 
Re: radiotherapy and later NA or Xiaflex?

FYI ... IN 2009 6 weeks prior to NA i have steroid shot into nodule in pinky that was contracted 95 degrees...during the NA I got another injection into the nodule ...steroid injection softened and made the nodule smaller ... then it was easier for the Dr. to do NA..... finger is still near perfect ... nodule has not grown ... of course I still wear splints every night ..

01/20/2015 07:53
spanishbuddha 

Administrator

01/20/2015 07:53
spanishbuddha 

Administrator

Re: radiotherapy and later NA or Xiaflex?

From reading posts on the Dupuytrens Contracture group on Facebook, although hand surgeons in the U.S. have not come around to RT, there does seem to be a LOT of RT being performed for DD by radiologists in oncology centres in the US. Most of the info comes from sources such as this website, and some interactive exchanges are occurring between doctors and centres, but treatment provision is led by patients pushing for it themselves. This website lists some centres treating DD with RT in the US, but only those where there has been an email verification and approval, and I would say is now quite incomplete.

01/20/2015 22:16
Molloy 
01/20/2015 22:16
Molloy 
Re: radiotherapy and later NA or Xiaflex?

SB,
Yes, I think you're right--it's the patients who are going to have to help move things here. I'm at the moment actively looking around for providers who do radiotherapy for DD in the northeast US, will share whatever information I can turn up as soon as I have it. The list of providers in the US on this site is fairly limited in that geographic region (one site in New Jersey that I'm trying to contact).
best,
Molloy

01/23/2015 21:20
callie 
01/23/2015 21:20
callie 
Re: radiotherapy and later NA or Xiaflex?

Hello, I'm back.

I have decided that the RT for me was a total waste of money. I completed treatments on January 10, 2013. It seemed at first that it might have stopped the growth, but the more I think about it, it just seemed to be gathering more problems. Now, two years later the growth seems just as relentless with the cord growth and contraction. Now at about 15 degrees contracture compared to just the growing nodules prior to RT.

Naturally, many others seem to have experienced success.

Molloy, you bring up interesting points. My stage was almost exactly the same as yours when I considered RT. I had surgery on my other hand (little finger 90 degrees contracture) 12 years ago. That hand is absolutely perfect still. Also, you mentioned a terminal illness. I was diagnosed with MDS/AML about a year ago. So I have lived the experience you referred. They gave me about seven months to live with the only possible cure being a stem cell transplant. I had the transplant and so far it has gone "picture perfect" which is very rare. There is absolutely no comparison between Dupuytren's and getting a diagnosis for a terminal cancer. I think of this Dupuytren's as kind of a novelty now, whereas it seemed so important before.

Edited 01/23/15 23:33

01/23/2015 21:34
Molloy 
01/23/2015 21:34
Molloy 
Re: radiotherapy and later NA or Xiaflex?

callie:
Hello, I'm back.

I have decided that the RT for me was a total waste of money. I completed treatments on January 10, 2013. It seemed at first that it might have stopped the growth, but the more I think about it, it just seemed to be gathering more problems. Now, two years later the growth seems just as relentless with the cord growth and contraction. Now at about 15 degrees contracture compared to just the growing nodules prior to RT.

Naturally, many others seem to have experienced success.

Callie,
Sorry to hear about this. Where was your RT done? Was an analysis made there as to whether or not you were in an appropriate stage for RT to have the best chance to be effective?
best,
Molloy

01/23/2015 21:36
spanishbuddha 

Administrator

01/23/2015 21:36
spanishbuddha 

Administrator

Re: radiotherapy and later NA or Xiaflex?

callie:
Hello, I'm back.

I have decided that the RT for me was a total waste of money. I completed treatments on January 10, 2013. It seemed at first that it might have stopped the growth, but the more I think about it, it just seemed to be gathering more problems. Now, two years later the growth seems just as relentless with the cord growth and contraction. Now at about 15 degrees contracture compared to just the growing nodules prior to RT.

Naturally, many others seem to have experienced success.
Glad to hear from you again callie, I do hope that's a good sign. Sorry of course to hear RT has not been effective for you. If only we could figure out why it works for some and not others. But that's the same line of questioning about the disease in general. In the hand I had treated 3 years ago, something is continuing to change, odd minute skin 'blisters' half a mm across under the top layer visible in bright light or sunlight, and a strange flat nodule if it is a nodule, but generally the hand remains soft, softer than when I had the RT, so I count that as a success although that might be construed as misleading.

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success   something   degrees   contracture   relentless   treatments   continuing   Xiaflex   experienced   Dupuytren   progression--last   significantly   professionally   effective   SpanishBuddha   straightforward   proliferative   contraction   visible   radiotherapy