Marjorieb,

You know, I never thought once about if I was doing my RT "too early". I had a nodule and a cord going through my palm towards my middle finger. It was aggressive and my skin was beginning to pucker, dimple, the finger was becomming stiff and the cord was beginning to pull on my middle finger. I felt like if it was active then it was time for RT. For me it was a wise choice. It stopped the progression and my hand improved. My opinion is that if RT works, it is like freezing in time what your hand/feet look like. You will be lucky if it improves and hopefully it will stop the progression. When you say it might be too early, then I ask: What are you waiting for? If your fingers are becomming stiff then it sounds like yours is active. I did not want to have contraction start. The research stated RT would not help contraction. My first line of defense was RT, if that did not work and contraction occured then the second treatment option for me was NA. If you have the opportunity to go to the best doctor for RT and possibly stopping DD in it tracks then then my opinion is DO IT.

Good luck with your decision. I know it was hard for me to make my decision. No two peoples hands or feet are the same, and no two paths in making those decisions are the same. When I weighed the side affects of RT, looked at the possible future of my hand, the pain I was having, and the way I was losing flexibility then it became a question of "What am I waiting on? My hand was changing for the worse weekly and becoming noticably weaker, to me that was the sign to go for it.

Good luck and keep us posted.


Lori

Hi Marjorie. I only realised I had DD last October, although I now recognise I had symptoms going back 2-3 years.

In my case it was clearly active over the last 3 months, new nodules, soreness, tightening, and as an amateur but keen piano player i wanted it stopped so I emailed Prof S with some photos and some symptoms. He made it clear by email, and also in the consultation that he will only do RT if it is active as indicated by recent changes. I think an initial email is fine, it doesn't have to be a commitment and the Professor is not 'pushy'.

I never had any serious problems with my feet after RT, and for one of my hands which was treated more recently I felt a short period of some soreness which faded away after about 3 - 4 weeks. At the end of my treatment the PROF recommended "to avoid mechanical or physical strain" for about four weeks after radiation therapy ... so don't use your lawn mower Larry

Edited 03/02/11 21:50

I am leaving for Hamburg this Thursday, and have my first appt with Dr. S. next Monday (3/14). If he thinks RT is appropriate, I will start treatment that day and stay through Friday.

I'll keep you guys updated. Will anyone else be getting treatment from him next week?

And for those contemplating your options, I can second the advice of "don't delay" if your disease appears to be progressing. If you have an aggressive case, it can move so fast it's scary. I had my first round of RT a little over a year ago, and it completely stopped the disease (I've since had a new nodule appear, so that's why I'm getting RT again). But I did lose a little bit of functioning -- not enough to need to seek NA or other treatments for cords, but enough that I do notice from time to time. If I had gotten the RT a month sooner, I don't think I would have lost any functioning. On the other hand, if I had waited another month, I would probably have had to seek treatment for contracture.


Maddie

Best wishes Maddie.

I just scheduled my trip for the second round of RT with Professor Seegenschmiedt. Hopefully in June I'll be able to enjoy the lakes, parks, pavement cafes, cycling and harbour.