Hi all,

I just registered today after following the site and the very helpful posts from other members, for about a month. Thanks Luba for directing me to this site and to everyone who takes the time to post about their experience. It's been very helpful hearing about the experience of others with different treatments.

I was diagnosed with DD just 5 months ago in my left hand and it has been progressing very rapidly. Two small nodules are now looking like large spreading bumps and my 3rd and 4th finger are now being pulled tight by the cords. It seemed to evolve as a result of overuse injury essentially to my index finger, from extensive guitar playing and possibly the motorcycle (clutch). I've had to face the painful reality I may never play guitar again, a passion for over 20 years.

After reading the posts, comments from other sufferers and my own research, I'm still struggling to decide which therapy fits best and that I'm most comfortable with. I'm in Canada where Xiaflex is not available and radiation does not appear to be an option (I've called a number of hospitals), but I have no issue with travelling for those treatments.

I'm unwilling to try Xiaflex at this stage, so that leaves two:
1) Radiation. I'm concerned about the dose of radiation. Has anyone asked about this? Just how much radiation is a full treatment? Is it essentially like having an x-ray 10 times, or is the dose higher or lower?

2) NA. If my DD is progressing rapidly, does it make sense to have NA now? Will it not just continue after the procedure?


Any comments would be really appreciated. What a peculiar and annoying disease! Hope you all have the best of luck beating this thing. Thanks for creating this site!

Dane

Gibbs:

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Hi all,

I just registered today after following the site and the very helpful posts from other members, for about a month. Thanks Luba for directing me to this site and to everyone who takes the time to post about their experience. It's been very helpful hearing about the experience of others with different treatments.

I was diagnosed with DD just 5 months ago in my left hand and it has been progressing very rapidly. Two small nodules are now looking like large spreading bumps and my 3rd and 4th finger are now being pulled tight by the cords. It seemed to evolve as a result of overuse injury essentially to my index finger, from extensive guitar playing and possibly the motorcycle (clutch). I've had to face the painful reality I may never play guitar again, a passion for over 20 years.

Dane

LubaM.:

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Gibbs:

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Hi all,

I just registered today after following the site and the very helpful posts from other members, for about a month. Thanks Luba for directing me to this site and to everyone who takes the time to post about their experience. It's been very helpful hearing about the experience of others with different treatments.

I was diagnosed with DD just 5 months ago in my left hand and it has been progressing very rapidly. Two small nodules are now looking like large spreading bumps and my 3rd and 4th finger are now being pulled tight by the cords. It seemed to evolve as a result of overuse injury essentially to my index finger, from extensive guitar playing and possibly the motorcycle (clutch). I've had to face the painful reality I may never play guitar again, a passion for over 20 years.

Dane

Hi Dane,

I am glad that I was helpful in bringing you to this site and I know that you will get tons of great information if you continue to follow it.
If you have been following the forum for about a month, you already know that indeed it is a peculiar and annoying disease and that it is "weird" because no two people have the same symptoms, same experiences or same results, no matter what treatment they seek...the disease progresses even different in the same person from one hand to the other.

In the end, you have to be your own doctor, and just follow your intuition on how to go about the treatments. I can only speak of my own experience. I also feel that my two options at the moment are Radiation (RT) and NA. For me, Xiaflex is too new....and surgery is definitely a "last option". I had RT ten months ago on my left hand and left foot and it has stopped the progression, so far. Nodules are much softer and smaller, itching and burning have stopped, I can open my left hand much wider.

On my right hand I have a "badly" contracted small finger at the PIP joint and DIP joint. I had NA on it twice. From my own experience (and from others who have posted on this forum) I know that the PIP joint of the small finger is hardest to correct, so early intervention is advisable for small finger PIP joint (although others have reported successful NA's of the small finger PIP, no matter how bad the contracture was).

If you are interested in RT in Southern California... please post and I can share information. What joints do you have affected and what is the degree of contracture?

Best of luck.... Luba

I agree, the calculation and the underlying concepts are difficult to understand. The radiation exposure by radiotherapy of Dupuytren's, of course, depends on the radiated area but roughly 2 - 6 mSv are probably a good estimate (1.8 was for skin only). This is above the natural background per year but not dramatically. When comparing side effects you should keep in mind that the radiation is concentrated on a small area only while the background radation is on the full body. Still I haven't seen any reports on cases where RT of Dupuytren's triggered skin cancer.

Wolfgang

Gibbs:

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Thanks Wolfgang. I actually did miss the "side effects" link, and have now read the article "Estimate of the Risk of cancer...".

I did some reading and if I understand the calculations included in the article (please correct me if wrong as I'm not that proficient in math), we would receive an approximate effective total dose of 1.8 mSv relative to the entire body, or 180 mSv relative to 1 hand being treated, at 3Gy x 10 treatments. That would compare to receiving 3 mSv as natural background exposure for one year, or to one x-ray of the spine (1.5 mSv).

If correct, I feel less concerned about this treatment choice.

Big difference between the low level radiation of the underlying layers of the skin in your hands and deep radiation for cancer that is done on organs or the brain or bones. XRT has been done for more than 20 years and I have not been able to find any reports of increased increases in skin cancer of the hands of patients. The reason why the recommended treatment protocol consists of two sets of sessions with a 60 day gap is to provide time for the body to recover from the radiation which it is capable of doing at these low levels.