I, like you, did the research and could find no one in my area to do RT. Then I called Vanderbilt Ingram Cancer Center and the Dr. there agreed to treat me. I am his first DD/Ledderhose pt. and I am interested in seeing how your tx. goes. Please post all updates so we can compare notes. I had my first round October 11th. Thank you

Thank you Ann and Luba. I'm hoping this works. I had the condition diagnosed over 15 years ago but it was progressing very slowly until the last year. I'm still at stage N-N/1 so I'm hopeful this will halt the progress. I just turned 51. I have had type 1 diabetes dxed at age 10.

I saw Dr. Lauve (pronounced "love") today for initial consultation and will begin treatment on both hands next week: one week of daily treatments, 8 weeks off, then another week of treatment. I plan to keep a log with photos and post here.

So far I really like Dr. Lauve. None of that paternalistic doctor stuff--he treated me like an intelligent human being, and he seemed to be both very enthusiastic about and engaged in the research and history of treating Dupuytren's with RT. He had xeroxed a bunch of articles and made me copies, and we looked through them together. He asked what my expectations were--that kind of surprised me, but it struck me as a great question. What I really want, as I told him, was to stop the progress. I don't like it, but I could live with it as is. But, if it continues to progress, no way. Thus far I had seen an orthopedic surgeon who of course recommended surgery, but also to wait until it got really bad. That doesn't make much sense to me. And RT won't preclude having surgery later should it not work to halt or slow down the progress. In other words, I think I have a pretty realistic outlook. And I'm all for trying the least invasive treatment. I had wrist surgery in 2010 for De Quervain's tenosynovitis (yes, I have bad old hands) and although it helped somewhat eventually it was a big ordeal, I have scar tissue, and I had a long time in physical therapy, and it seemed to aggravate everything else--including arthritis I didn't know I had (yes, horrible hands).

Dr. Lauve seemed pleased with my outlook. I think he wanted to make sure I wasn't looking for a total cure, because the literature doesn't support that, and I understand that well. So then--we agreed to try. After a short physical exam, he marked up my hands with a sharpie to trace the cords and bumps, then mapped out an area to be treated surrounding those and made transparency tracings of them for use in making the lead masks that will shield the rest of my hands. He also scanned my hands with the markings on the photocopier and these scans were added to my electronic file.

My hands with Dr. Lauve's hieroglyphics are attached.

So far I'm thrilled to have found someone local who seems well-informed and communicates exceptionally well with his patient. I was contemplating going to Germany, even, but getting that much time off and paying for it all was going to be a stretch.

I'll report back here next week.

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Your radiation fields look pretty tight to my understanding ...

You need at least 1 cm lateral and 2cm longitudinal to your nodules and chords !
I would be concerned about the 5th digit which is not included ...

You should ask the doctor about this "safety margin", as the margin does not receive full dose ! Larry

First treatment today. There was a longish wait in the waiting room--2 hours--but there seemed to be some confusion in my appt. time. The staff continues to be very pleasant, and I am acutely aware that most people in the waiting room are there as cancer patients. Anyway there was free coffee and wifi, so I got some work done while waiting.

2 technicians administered the treatment with 2 students observing and helping. Quite a crowd for my little hands. All very young, cheerful people who sensed without my asking that the techno music going in the room was not my cup of tea, so they switched to jazz. I found the music thing odd, it was the last thing on my mind.

The machine is The "Artiste" (TM) shooting electrons. As I only dimly understand what that means, I'm reading up on it tomorrow. Dosage as written on the schedule I received as "Mang C 21e." Again, I'm going to read up on this. I would have liked more explanation on site, but the 2 hour wait meant if I lingered any longer I was going to be late for teaching a class. So I'll read up on it tomorrow morning and ask questions during tomorrow's visit. There is a certain amount of leap of faith in this for me at this point, but I'd prefer more complete understanding.

I had a bit of trouble adjusting to the height of the machine. They jacked my arm up pretty high at first, and that was mighty uncomfortable so I asked for something to stand on. But what they had made me too high, so I had to crouch and act like a human pretzel. I also asked them to tape my hand down since holding it down flat for extended periods while they adjust the machine, take photos of the set up, and administer the treatment was just not possible for me. The more difficult hand for me was the left, which has slightly more advanced DD and some arthritis. All in all it was uncomfortable, but not bad, really. I've had far more discomfort going to the dentist, for instance.

When they had everything set and ready they took some time to re-draw my treatment area boundaries which had rubbed off during the week, try as I did to keep them on. Who can go a week without a hand wash?

I asked about the possibility of dry skin, and a nurse gave me samples of Keri lotion. They took my vitals, and I had a short consultation with Dr. Lauve. More time was consumed before that setting up the rest of my appointments for the week, and I was running very late to get back to work, so I didn't get to ask about margins and such. I plan to tomorrow. I am a bit disappointed that there was so much wait and then hurry,and I hope I didn't mess it up by not asking about margins before treatment 1, but hope to do better tomorrow since I'm taking a full half day off and won't be rushed. Still, grateful I have a local place for this.

Hands feel no different. Of course not, not yet. I hope this works.

annmaiden:

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I, like you, did the research and could find no one in my area to do RT. Then I called Vanderbilt Ingram Cancer Center and the Dr. there agreed to treat me. I am his first DD/Ledderhose pt. and I am interested in seeing how your tx. goes. Please post all updates so we can compare notes. I had my first round October 11th. Thank you