(answering myself so I can click the setting so I get email when there's a response - new user sorry)

Ask the experts on this forum...but my understanding is that when it affects your hand, it always starts in the palm. From my experience, it starts as nodules in the palm, then develops cords that start pulling the fingers towards the palm. The best time to consider treatment is NOW...you can give radiation a try in the hopes that it will stop the progression of the disease and avoid contracture of the fingers in the future that will require further treatment like Needle Aponeurotomy or eventually surgery.

I have tried both, Needle Aponeurotomy (for a contracted finger) and Radiation for a palm filled with nodules and one small cord...If you live in the Southern California area there is a very good doctor at Scripps Clinic in La Jolla that is doing the radiation treatment.

My advice would be, don't wait for the fingers to contract... Let me know if you need further advice.

Hello,I live in the uk. I am 54. In january this year I had my first dose of radiation,2nd 6 weeks later,by a Dr Goode in Poole,Dorset.
I don't really see if there is any slowing of the growth,but what would it have been like without it?? The growth in my palms is now starting to make my knuckle protrude.
I first posted on this sight when diagnosed,and the radiation treatment information I gained from this forum.I was not given any advice from my GP only wait for contraction,and I was not going to do that.I have had numerous nerve tests,all negative,because this desease is painful,especially at night and effects my sleep, and although I have no contraction as yet,my hands and fingers,especially my tips,are losing their sensation.
My thumbs seem to be the worst and I'm wondering whether to go for Na to cut these cords.I saw a consultant 3 months ago and he said all the while I could hold a glass of wine in my hand,I should wait.
I have no other health problems,do not fall into and category for DC,but I did have serious burns on my hands as a child.
The worst is the frustration of mobility,I'm a dental nurse and struggling with the delicate sense of touch I require.
I don't want to sound moany,as I know theres much worse out there,I just don't know what to expect,as I read the posts it's clear that this creepy desease is a very mysterious maze,with no way out.

regards

Well, today I finished my first round of 5 treatments. They tell me it's electrons, 1500 cGy total. I can't tell any difference. The doctor says benign things like this take awhile to make a difference - like if there's no difference in 6 months then I could say it had no effect. Of course the second round comes before that though.

Wayne,

Your hand from your description seems similar to mine. I had that same feeling and location, except that it was my right hand. Nodule in the middle of the palm, tingling, itching, a crawling feeling, and pain. Within 2-3 months I quickly had a cord form that extended from the base of my middle finger almost to my wrist. It began to pull my middle finger down and puckering began to occur below my middle finger. Like you I had RT and that was over 2 years ago and still no new nodules. The nodule went away, the cord regressed into my palm, but the puckering is still noticable. Are you going to do RT again? Sounds like it worked the first time. I believe if I get any new nodules I will do RT again. It has worked so well.

Lori