Hi, I’m thinking about RT for my dupuytrens . From reading and telephone conversations with radiation clinics there seems to be several different ways of administering the RT. Here are three that I have found.
1. 5 days of RT, 6-8 weeks off, 5 days of RT.
2. 7 treatments of RT in 5 days. Basically Monday through Friday, with 2 treatments on Tuesday and Thursday.
3. 5 days of RT, weekend, 5 days of RT
Treatment plan #1 was perfected by the Germans, they seem to have the most experience using RT for dupuytrens. There are clinics in the US that follow this protocol, but they are out of my area.
Treatment plan #2 is used at the University of Oklahoma. It only takes a week.
Treatment plan #3 is used at Scripps hospital in San Diego. I live in San Diego.
So, are there any significant differences in these treatment protocals? My gut instinct is to trust the German protocol, because they have the most experience and published material/studies. There has to be a real good reason to break up the treatments with a 6-8 week break.
The Dr. I spoke with at U of O said there are radiation equivalency charts, which dictate different treatment protocol that are all basically equal. He said I should not concern myself with the differences.
Dupuytrens has badly affected the strength and dexterity of my left hand,( it has literally started shrinking) if the same thing happens to my right hand I would be out of work. I am definitely considering RT, but need to know which plan to pick.
Thank You
Bob

I had RT with Dr. Tripuraneni at Scripps hospital in LaJolla, CA last November. After 10 months, it seems to have stopped the progression of the disease in my hand as well as in my foot (I had RT both for my DD and Ledderhose). I had no dryness or any problems from the radiation... only positive results, no more itching and burning, decrease in size of nodules and able to open my hand much wider after RT.

Dr. T. is a knowledgeable, kind, and very professional doctor. Since you live in San Diego, and if your insurance covers it, consult with Dr. T. and ask him all your questions. I am sure that he can clearly explain what the differences are and why he thinks the method he is using is adequate. You will like him !

Edited 09/11/10 09:54

Hi,

I had my first RT yesterday (9/10) in Santa Fe, NM which is about 30 min. away for me. Initially, he told me I would have my first treatment Friday and then come back each day the following Mon-Wed, and perhaps more. He was going to consult w. Dr. Herman in OK. So I was surprised when I was told to come back on Thursday, which would be 6 days later. While I didn't speak diretly with the doctor, the radiotherapist did double check. So I thought I would check on my own here to see what the "norm" for incidents or treatments, time inbetween, is--there is any. I thought because travel/hotel is not an issue, perhaps that is why my treatment is more spreadout. Wondering what others experiences are?

I had treatment #1. 5 days in a row with 6-8 weeks separating the 2nd treatment of 5 days in a row. I had a little dry and reddened skin that lasted a few months. You could see the exact area that was treated by the red skin. My DD appears to be in total remission. No pain, more flexibility, I can fully open my hand, the nodule has all but disappeared, the cord shrunk and seems for the most part to have recessed into my palm. You can still see it if you are looking. If someone squeezes while shaking my hand I will have pain. I still have a general weakness in that hand. Dr. Crimaldi and I chose this regime because of the research provided by the Germans. I would choose this regime again if the DD returns. So far it has been over a year with no new nodules or growth. My DD was so aggressive in its growth from a sore spot to a 4 inch cord in less than 6 months, that I felt I needed to go with the research and "proven" method. I did not feel like I had the time to see if a lesser RT regime would be just as effective.

Each persons DD is different as is their choice for the treatment protocol. It is a little confusing, because unlike some diseases, we do have choices as to how to treat. I know I used to wish there was one and only one way to treat it. I think I would have slept better, rather than mentally debating what was best at all hours of the nght. I know after going through RT I am a big believer in it.

Regards,


Lori

patandpaula:

---

Hi Casa,
I had treatment with Dr. Hermann in Oklahoma, I went for four days in a row, seven treatments total (I was told in the beginning it would be five days in a row) Just wanted to share what happened in Oklahoma since you mentioned your guy consulted Dr. H..
Unfortunately, while I had no side effects, not even dry skin for more than a day or so, my Dup continutes to march on.

Paula