Callie, This is really bad news for me. After 2 rounds of RT, the DD is back, forming small nodes in my palms exactly where they were radiated. I've read that RT does not work for every one, and evidently, I'm one of them. Am thinking of going to see Dr. Kline in Boise, just to get some advice on what to do next. The only good thing is that the nodes that were there are not growing and I have no contracture. Vicki
I had my irradiation from the same location as you. I finished last month with my second round. I was asked to check back in one month which I declined (cost and hassle getting there). Then was asked for a 6 month check-up which I will probably decline also because there would be nothing beneficial for me and it would cost me (even with insurance).
My RT has greatly reduced the nodule I had that was active and seems to have greatly reduced two inactive nodules which had been dormant for 13 years. That surprised me. However, I have a nodule in the web between thumb and forefinger that still seems active but it may be too early to tell yet.
Thank you for your comments.
You might wait some time to see how these new nodules develop. They might not be anything to worry about if there is no cord developing. You have time between the development of the nodules and 0-5 degrees contracture. I would think that Dr. Kline would tell you the same thing.
Retired Teacher: My hope was that RT would just stop the progression of DD in my hand. I did not count on anything shrinking, but there was a little shrinking. The effect I noticed first were the itchy, crawly feelings in my palm went away. Improvement continued for several months, I'd say about 4-5 months. By then, the strength of my grip was much better. I could/can take the cap off a water bottle.
I was never told that it would reverse anything and it has not reversed cords except where connecting nodules shrank, it might have pulled a little less.
Cords are easily released by NA and that is my preference at this time.
Flojo, That was also my hope, that RT would stop the progression of the disease. So far I have no new contractures and for that I am thankful. Dr. Kline thinks that a steroid shot in each of the very small nodes that are forming will help. The steroid shots atrophy the proliferating cells. So, at this point, with no contracture, I will try the steroids. I really feel for you patients who have lived with this for a long time. I have only been dealing with it for 2 years and other than the DD, I am very healthy!