Glad you had the xiaflex. Best wishes.

I have xiaflex injection and manipulation in June with really good results. Going back for second injection in mid September. I have considered radiation therapy but don't like the odds of radiation related problems down the road. Will investigate further.

But, best of luck with the xiaflex. Keep posting.

Hard to type!

Had manipulation today with lydocaine (say yes to pain meds!!) Finger was easily straightened. Large cord that NA wasn't able to break was easily handled with the Xiaflex--the cord is now gone! Pretty amazing.

Hand is very swollen & still numb some 5 hours later. I'm sure there will be a good amount of pain coming my way. But, a straight finger after 2 years is going to be nice. I'm most interested to see how loing it stays straight.

Wearing a splint today & will use it at night to "encourage" the finger to stay straight.

Dr. Hutson was great to work with. Very straightforward & honest. He's got a great personality.

I'll post again in the coming days about my progress.
Eric

Flojo,

I would be interested where you got your '1% risk' from?

Based on the paper provided on the website (theoretical risk) and no recorded cases (empirical risk), the 1% I have heard mentioned before on this forum seems an overestimate to me. You might interpret via extrapolation between the Jansen paper for heel spurs and the additional radiation dosage of DD treatment that a 1% risk might be for a pessimistic estimate for patients under 30 years old. For older patients, even if you are being pessimistic, 1% is probably a significant over-estimate.

My concern is that outside this forum, the risk of secondary tumours is used to persuade patients that radiotherapy is too risky. A 1% risk would have made me think twice about RT, but in my case, a lower less than 0.1% estimate, in combination with an explanation that there were no recorded cases and a lifetime risk of ~25% of cancer, made me not think twice about the treatment.

What I am trying to say is that if anyone quotes figures, like 1%, it would be helpful if these figures are backed up by hard evidence, theroetical or empirical. Without this hard evidence we fall into the same catagory as medical professionals who use unquantified perceived risks as a rationale for dismissing radiotherapy.

If you have hard evidence to justify the 1% risk, it would be useful if you could share it with the forum and we could add it to the body of evidence provided in the paper on the website.

I am not a medical professional, so I can only interpret the evidence provided in the paper and information provided to me by a professor of radiotherapy at the time I was looking for alternative treatments to surgery 11 years ago.


Philip

Unless I have not accurately remembered Dr. T's discussion RT including risk, he said about 1% after 25 years. (Note: "about 1%") I told him that I planned to live until 100 and I was 71 at the time. We laughingly discussed that I would hit the 25 year risk time before I turned 100. To me, 1% is so minimal that I consider it practically nil. I do need to remember, however, that other people might consider that as a high risk. I don't.

I didn't ask, but I assumed that Dr. T based it on research. I had done my own research on this site and I was strongly leaning toward having RT anyway. I did and still figure that there is no other option at this time to stop the progression. I would probably have had RT if the risk factor was even higher because the progression of my DD was not slowing down. I had RT almost 2 years after I first noticed it and was diagnosed.

I did ask Dr. T where cancer might occur - in the skin, in the fascia, in the bone or where. I asked if the risk of cancer anywhere else in the body would increase. He said the increased risk would only occur in the area that the radiation/electron beams reached. My understanding is that the depth of electron radiation is controlled and it doesn't go all the way through the hand. That's why he did a CT scan to determine the depth of Dupuytren's in my fascia and set the radiation based on the info from the CT scan. The metal plate was cut out according to the map of the DD in my hand and only that part of my hand was exposed to the electron beam.

What I have said above about my personal experience is all I know. I'm not in the medical field at all, but I find out all of the relevant information that I can before I make decisions about most things. I found out all I could about RT before I ever went to Dr. T. I waited about 2 months after my first evaluation and consultation with Dr. T because I had personal scheduling conflicts and could not get there before. I already had my RT scheduled to begin on Monday after my personal schedule conflicts were over on the previous Saturday. I was a little concerned that it might not be active by the time my RT was scheduled, but it showed no signs of going dormant.

Everybody has to make his/her own decision based on the best information available. Fortunately for me, I had found out about this site and sought all of the info I could from links and Forum posts. Actually, it was the personal experiences that others had posted as much, if not more than the research, that really helped me with making my decision. Knowing the background from research helped me relate to the personal experiences of others.

Hi,

Glad to hear the progress; I took Advil for a night and day after the manipulation. Pain was minimal after two days.

Re: the RT comments I made (concerned about the long term risk) I should have clarified that the estimate of 1% chance of cancer over 25 years (not after 25 years) is , in my judgment, a higher risk than I'd like to take at this stage. But it is surely an individual choice and is affected by disease severity, prior treatment sucess or failure, patient age, etc.

I can also believe that Phillip's assertion of lower risk might be true, too. The problem with RT and with xiaflex is that there is very, very little data on the long term results and side effects of RT and none on the long term effects of xiaflex.

Unfortunately those of us with DC are caught without sufficient information to make choices that leave us 100% comfortable with the long term efects of most treatments. NA seems the most cautious approach, but also-depending upon the data you read-has a pretty high recurrance rate. Multiple NA is always an option and seems very safe. Personally, I am in the process of a series of xiaflex injections (after having NA last yr.) and the early results are very encouraging. But, there is no data about long term effect.