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radiation
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06/13/2007 10:27
heybhouse 
06/13/2007 10:27
heybhouse 
feedback

Hi. I'm new to Ledderhose (had it diagnosed about 2 months ago in one foot - very early stages). I live currently live in Germany on business and I've seen Seegenschmidt in Essen and the team in Erlangen yesterday. I thought radiation would be a no brainer but the main doctor I spoke with at Erlangen (don't know her name) was very reluctant for me to get the radiation treatment because I'm 35 and she felt I was too young and the chances for the significant side effects were much greater for me and recommended I not have it done. The other doctor I saw here (the ueberartz - her supervisor) was much more cavalier about it (as was the doctor in Essen). I'm wondering if you guys have done more reading on this and might have any thoughts. More importantly for me, I'd really appreciate hearing about your experiences with it (how long you've had it, how big it has grown, how limiting had it been to walking and running, how painful is it, how fast has it grown, etc.). I have to decide fairly soon about treatment. Thanks very much!

06/13/2007 11:21
wach 

Administrator

06/13/2007 11:21
wach 

Administrator

Re: radiation

I don't know whether that answers your question but you might have a look at http://www.dupuytren-online.de/downloads...20Dupuytren.htm . The risk of getting cancer depends on age (or rather the remaining life time) and is with 35 probably twice as high as with 60 but still low for radiotherapy of hand or foot. Other parts of the body are in part much more sensitive. The usual dose for radiotherapy of ML is 30 Gy, you might compensate for your age and just have 15 Gy. Sounds strange but the minimum necessary dose is not yet established and probably depends on the size of the nodule. For a new, small nodule 15 Gy might do the job anyway.

Personally I have trust in Seegenschmiedt, he is one of the experts for treating ML in Germany.

Wolfgang

Quote:



Hi. I'm new to Ledderhose (had it diagnosed about 2 months ago in one foot - very early stages). I live currently live in Germany on business and I've seen Seegenschmidt in Essen and the team in Erlangen yesterday. I thought radiation would be a no brainer but the main doctor I spoke with at Erlangen (don't know her name) was very reluctant for me to get the radiation treatment because I'm 35 and she felt I was too young and the chances for the significant side effects were much greater for me and recommended I not have it done. The other doctor I saw here (the ueberartz - her supervisor) was much more cavalier about it (as was the doctor in Essen). I'm wondering if you guys have done more reading on this and might have any thoughts. More importantly for me, I'd really appreciate hearing about your experiences with it (how long you've had it, how big it has grown, how limiting had it been to walking and running, how painful is it, how fast has it grown, etc.). I have to decide fairly soon about treatment. Thanks very much!


06/13/2007 11:56
heybhouse 
06/13/2007 11:56
heybhouse 
Re: radiation

Thanks for the info. I see him again in August so we'll see what happens. The folks in Erlangen referred me to Freiburg (closer) and I met with the chefarzt there who also recommended I not get radiation quite strongly. She said she was very familiar with Seegenschmiedt (had a bunch of his stuff on her desk) but thought I should hold off unless things get worse. I was wondering if anyone has tried any of the following: Neprinol, N-Acetyl L Carnitine, or the freezing. I found a few posts on the second but not the first or last. Any info would be great. Thanks!

06/13/2007 16:57
wach 

Administrator

06/13/2007 16:57
wach 

Administrator

freezing

For info on freezing might have a look at

http://www.dupuytren-online.info/other_therapies.html (scroll down to cryotherapy)

and

http://www.dupuytren-online.info/Cryotherapy.htm

You will also find a lot of info and patients' comments about cryosurgery/cryotherapy in the plantarfibromatosis group of Yahoo. David Adams, the moderator of this group, was one of the first patients who tried this therapy for Ledderhose and reported results to the group.

Wolfgang

10/09/2007 14:30
Jennifer 
10/09/2007 14:30
Jennifer 
Re: radiation

I have now completed my two treatments of radiation! I was wondering for all of those people that have had radiation what to expect. I am thankful that I was able to catch my Dupuytren's in the early stage, but I must say that my hands are very sore and painful (not from the radiation). I wonder if I have something along with the Dupuytren's . I have an apointment with a doctor in a week just to do blood work. I am so confused about this disease. I don't know what to eat, drink or do. I love to play golf - I play two,three times a week. Is that hurting my hands more? Does having a drink of wine with dinner affect the disease, does eatting a pizza cause more pain. I cannot figure all this out. Is there anyone out there with any answers or do we just stay in the dark with this silly disease. I would love to hear from anyone on this.

thank you,

Jennifer

10/09/2007 14:46
wach 

Administrator

10/09/2007 14:46
wach 

Administrator

Re: radiation

Hi Jennifer, the most important advice is: don't worry but enjoy your life. You only have one why not enjoy it? A glas of wine after dinner won't do any harm, pizza might possibly help gaining weight but will not affect Dupuytren badly (at least nobody has proven that yet and I am having pizza myself) and golf will compensate for having pizza. So you are doing the right thing! You are right, it's a silly disease, and we don't let silly diseases spoil our life.

Wolfgang

Quote:



... I don't know what to eat, drink or do. I love to play golf - I play two,three times a week. Is that hurting my hands more? Does having a drink of wine with dinner affect the disease, does eatting a pizza cause more pain. I cannot figure all this out. Is there anyone out there with any answers or do we just stay in the dark with this silly disease. I would love to hear from anyone on this.

thank you,

Jennifer




Edited at 09.10.07 17:47

10/10/2007 14:50
Jennifer 
10/10/2007 14:50
Jennifer 
Re: radiation

Thanks Wolfgang, You are exactly right! I have never been sick or had any problems. Just always have done all the right things to take care of myself and body. I guess I am still not excepting that I have this disease. I need to go on with my life. I have done all I can do and now I need to just enjoy life. Thanks for the advise..... I don't know what I would do with out this Forum......

Jennifer

10/11/2007 12:02
nmrsme 
10/11/2007 12:02
nmrsme 
Re: radiation

I just completed seven dosages of radiation and was curious to know what I should expect. When do most people see any results such as shrinking of nodules or softening of them? I also have noticed a slight soreness in the radiated area that I believe was there before the treatments as well. It is not there all the time but was also curious if others have felt this.

Neil

10/12/2007 07:20
Wolfgang

not registered

10/12/2007 07:20
Wolfgang

not registered

Re: radiation

I would wait maybe 4 weeks. If it softens the nodule it should do it by then and the soreness should also have gone by then (if caused by the radiation). It might help to apply a fatty skin creme one or two times per day.

Wolfgang

Quote:



I just completed seven dosages of radiation and was curious to know what I should expect. When do most people see any results such as shrinking of nodules or softening of them? I also have noticed a slight soreness in the radiated area that I believe was there before the treatments as well. It is not there all the time but was also curious if others have felt this.

Neil


10/13/2007 02:56
newman 
10/13/2007 02:56
newman 

Re: radiation

Australia Calling. Hi I have just received radiation to my hands done by Prof.Seegenschmidt in Essen Germany. I asked about the use of hand creme as I had read on the forum about some persons reporting the drying out of the skin.He advised to obtain a creme with a high amount of urea. In Australia I use a high potency 10% just purchased at any chemist.He also suggested applying the creme at night and wearing white cotton glove which are easily washed .Good old Vasoline is o.k. but a bit messy. One of the doctors mentioned not to expose the radiated areas to the direct sunlight , nor to use oil paint ,bleach etc for 4 to 6 weeks. Try this .Regards.

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