| radiotherapy and later NA or Xiaflex? |
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01/23/2015 21:57
callie 
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01/23/2015 21:57
callie
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Re: radiotherapy and later NA or Xiaflex?
Yes, my hand (little finger and thumb) was well examined. The nodules were in the growth stage and tender and just a hint of a cord starting. I have been closely tied to Dupuytren's and was well aware of the optimum time frame. Presently, the cord is thickening and considerable "puckering" at the base of finger into the palm. It seems to be more aggressive than 12 years ago on my other little finger. 12 years ago, that little finger went from 0 degrees to over 90 degrees in about 18 months, which was quite aggressive. At the same time I had LD in arches that has total disappeared over time. Go figure.
I am at 160 days post stem cell transplant and feeling "normal". Just like Dupuytren's, I'll never be able to track what will come next. My new disease affects everyone differently just like Dupuytren's. Interestingly, my donor was a 20 year-old male from Germany. What an experience.
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01/23/2015 23:11
chewie 
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01/23/2015 23:11
chewie
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Re: radiotherapy and later NA or Xiaflex?
spanishbuddha:
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.
Sorry to hear about your illness Callie. I hope the stem cell transplant is a total success. Sorry also to hear about your RT. I had my first treatment and in a couple of weeks start the second round. It doesn't compare to what you are going through but I'm just hopeful. Take care
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01/24/2015 18:20
Lanod 
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01/24/2015 18:20
Lanod
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Re: radiotherapy and later NA or Xiaflex?
Callie,
Welcome back! Your contributions are always informative and helpful.
I wish you every success on your road to recovery.
Very best wishes to you!
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01/24/2015 19:51
callie
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01/24/2015 19:51
callie
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Re: radiotherapy and later NA or Xiaflex?
Thank you for the good wishes. I feel great now. I got a $500,000+ education paid mostly by my insurance. I learned a lot and the journey will continue the rest of my life. Not much differently than Dupuytren's which can be relentless.
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01/25/2015 13:14
humana
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01/25/2015 13:14
humana
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Re: radiotherapy and later NA or Xiaflex?
spanishbuddha:
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.
I also have "odd minute skin 'blisters'" about 2 mm wide scattered across both palms and up the fingers. They are not full of any fluid and if you pick at them (say with a needle) they just come right back. I've been told they may be caused by a virus, similar to a wart, but that was just a guess. I've never received RT.
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01/25/2015 18:08
spanishbuddha  Administrator
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01/25/2015 18:08
spanishbuddha Administrator
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Re: radiotherapy and later NA or Xiaflex?
humana:
spanishbuddha:
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.
I also have "odd minute skin 'blisters'" about 2 mm wide scattered across both palms and up the fingers. They are not full of any fluid and if you pick at them (say with a needle) they just come right back. I've been told they may be caused by a virus, similar to a wart, but that was just a guess. I've never received RT.
Yes, the very first time I noticed one of these, it grew from half a mm to a couple of mm. I thought it was, a blister, then a wart, then ringworm. Treated it with acid wart treatment, it came right back. This eventually turned into my very first DD nodule, although even then at that time I did not know what it was. So they were not caused by RT. I have another one now visible under normal conditions, but all the others are only visible under very bright light, sunlight is best. I have heard from one other person with a similar occurrence, now you. I showed one to ProfS but he was not impressed.
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01/25/2015 18:52
callie
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01/25/2015 18:52
callie
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Re: radiotherapy and later NA or Xiaflex?
That is interesting. I did the same thing 14 years ago, "acid wart treatment". I always have thought I made a big mistake by doing so. The Dupuytren's really took off afterwards (to 90 degrees) and then I had my surgery. It seemed like the Dupuytren's was trying to tell me, "don't mess around".
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