ell:It feels weird to be excited about getting approval from my insurance company to have radiation, but I am! I want to thank Lori again for referring me to Dr. Crimaldi at Southeast Radiation Oncoloy in Charlotte, NC. He was truly awesome, as Lori promised he would be. I'm having the treatment at one of their satelite clinics, and it will be a 2 hr drive for me each way, but I figure it's 10 days of my life, and I'm willing to invest the time. The clinic has bent over backwards to get my insurance approved, and to accomodate me. My first treatment is February 25. They are also going to treat my left hand, which does not have any palpable nodules, but some thickening in the palm that he suspects is DD. He & Dr. Mitro, who will be doing my treatment, were both very optimistic about the treatment and although I was undecided prior to the appointment, after talking with them, I was 100% in.
Dr. Crimaldi told me to say on this forum that he is happy to see anyone who is willing to come to him. He is treating more and more people each year with Dupuytren's and Lederhose. The people in his office are extremely cheerful and helpful. Such a breath of fresh air after seeing 2 different hand surgeons who both told me to come back when I fail the tabletop test.
A question for those of you who have had RT - I'm assuming I'll need to avoid the sun for the next few months? Maybe get some lightweight SPF gloves? I have gardening and utility gloves but am thinking more about driving, hiking, walking, etc.
Thanks for reading, and I wish the best of luck to all you dealing with this very strange disease.
Sounds like good advertisement for Dr. Crimaldi: Has he published his results yet ?
On what basis does he warn you about avoiding sun exposure ? I have never heard something like that during my treatment in Germany ... ???
So do you wear white sun-protected gloves ? Or use sunprotection filter "50" ???
Your whole-life-sun-exposure dose (with "dangerous rays") before and after radiation is hundred fold of what you receive during RT ... !
Good luck for you and hopefully all goes well, Larry
TimLintz:I too have just recieved approval for RT at University of Michigan - Ann Arbor. I am excited also. I have had 5 hand surgeries to fix my hands. If this just retards the progression I will be thrilled. I will post later on the outcome.
I would like to know on which scientific basis the use of POSTOPERATIVE RADIOTHERAPY is justified after 5 surgeries (!!) and with which RT dose concept your hands are to be treated ??
I know, that radiation therapy in GERMANY is not using RT in the postoperative setting; You may and should approach a specialist like Dre. Betz or Prof. Seegenschmiedt about this issue !
Ellen said "she assumed" she would have to stay out of the sun. But as a matter of fact. Dr. Crimaldi told me to avoid direct sun to the treated area during the treatment time. He said the skin would be more sensitive and could possibly sunburn. He was referring to activities like sun bathing and not normal outside activities. Also, during the treatment period my hand did turn pink in the treated area and looked as if I had a mild sunburn. It went away after a couple of days, but it did remind me of his concerns.
Hi, Lori & all - finished my first week of RT today. No worse for wear other than the wear & tear on my car driving 2 hours each way every morning, but I'm optimistic it will be worth it. No side effects yet. There's no doubt that the Dup's in my right hand is active as the nodules have gotten bigger & harder over the past few weeks, so hopefully I hit this at the right time. My left hand has no nodules, but Dr. C felt there was enough thickening to treat that hand too, which I was very grateful about. Six week break and then round 2.
To those of you who've seen shrinkage or softening of your nodules with RT, how long was it before you starting noticing it? I'm told it can take months. I know that might not happen, and that slowing of the progression is the goal, but it wold be nice bonus.
Glad to hear all is well. I will try to attach pictures from 8/09 showing what my hand looked like prior to RT, about 2 months after the first round and then about 6 months after. You can clearly see that my nodule started softening and getting smaller about 1-2 months after the first round. I was lucky. Hope this helps you.
The nodules in my hand started going down in the second week after the first round. They have continued going down after the second round and are no problem now six weeks after finishing RT. Hopefully a year from now they will still be fine. We'll see.
That's great, Callie! RT is our best friend for stopping the progression of Dupuytren's.
I have a consultation appointment on the 25th about RT for Ledderhose in my right foot. Almost the whole arch area of the sole of my foot has nodules and they keep developing. I am going to Dr. Keterelos, LLUMC, who did RT on my left hand.
My right hand was first and most aggressive. Left hand DD was staying in the triangle from the base of my thumb at the wrist, forefinger, and web but it was progressing in that area. Now, it's my right foot that is quite aggressive in forming nodules. It's active, progressing, and time to RT it.
I had RT on my left hand 18 months ago. I noticed subtle changes at the end of the first set of treatments. While certainly subjective, there seemed to be less tightness. I had been getting a acute pain shooting up into one finger at least once a day, especially when stretching my hand. That ceased after the first week. It took some months to notice the nodules getting softer and flatter. I had a patch of numbness on the side of the finger that was painful. This has also gone. There was a patch of slightly dryer and darker skin in the irradiated area. This responded to increased moisturising. The colour change was very subtle. Surprisingly the dryness is still apparent.
In summary, after 18 months, the disease which had been very active has not progressed. The nodules are smaller and flatter but still palpable. My hand feels looser and no longer aches in the way it did. However, there is still some aching, particularly after gardening or other heavy use.
Now the bad news, over the last month a new nodule has rapidly developed on the right hand. It is quite different from the others, about 10mm in diameter, sitting on top of a tendon. The nodule is rather flat and soft. The tendon seems quite hard. There is no other soreness, ache or pain. Yesterday I visited my GP to get a referral for RT to the same person in Brisbane, Australia who did the previous treatment.
The question I have is, whether to seek treatment now or see how things progress over the next few months and treat if it continues to be active. If the nodule keeps increasing at the current rate it will be disturbingly large in 4 weeks time! We all know how this disease can start and stop for no particular reason.
There is reason not to expose oneself to unnecessary radiotherapy.
It sounds like you are describing a cord, rather than a tendon.
You said, "It is quite different from the others, about 10mm in diameter, sitting on top of a tendon. The nodule is rather flat and soft. The tendon seems quite hard.
I agree with Callie. Froom your description I would also think it is a cord rather than a tendon. I thought mine was a tendon with a callus on it until I saw the doctor. If it is growing at a fast rate, it would be more beneficial to stop the growth before any contraction occurs.
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