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radiation
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04/12/2007 13:58
Jennifer 
04/12/2007 13:58
Jennifer 
radiation

I was just diagnosed yesterday. I am reading like crazy to find out about this disease. I keep reading that in the early stages radiation works. Can anyone put in the direction that I need to go to find out more on that. I am assuming I am in the early stages, my figures and hand have not restricted.

04/13/2007 04:50
bstenman 
04/13/2007 04:50
bstenman 
Re: radiation

Your options are to wait and monitor the disease progression or to seek radiotherapy treatment in Montreal or Germany. Due to bad advice from my doctors I let the disease progress to the point of contracture and now have had a NA on both hands and am flying to Germany next week for radiotherapy.

For myself, had I known a year ago what I have learned from this website and the research I have done I would have had the radiotherapy performed as soon as possible.

If the disease has progressed to the point that it can be diagnosed, and this can only be done by visual inspection and manual palpation of your hands, then I suspect you are far enough along to consider radiotherapy.

There is information available on the few studies done on the results from radiotherapy with relatively small groups of people. It is still experimental in that sense. But the potential benefit is great and the risk is very small.

I put together a decision matrix for myself that took what I knew about the direct and indirect costs of various courses of action, their efficacy, risk of complications, and their long term odds for recurrence. As a result I decided on NA instead of a faciectomy and to follow the NA with radiotherapy.

I would urge anyone else faced with such a decision to put together their own matrix. It helps to summarize the findings and in my case made me comfortable with my final decisions.

Bruce

04/14/2007 10:19
Jennifer 
04/14/2007 10:19
Jennifer 
Re: radiation

Bruce, Thank you for your quick response. How did you find the hospital in Germany? I would appreciate any information that you could send me on your resources. I want to do this as soon as possible before it goes any further. It seems to be changing by the day. I don't understand why they don't do radiation in the states.

Thank you, Jennifer

04/15/2007 05:43
Wolfgang

not registered

04/15/2007 05:43
Wolfgang

not registered

Re: radiation

Jennifer, you find the address of the Essen hospital (Prof. Seegenschmiedt) on
http://www.dupuytren-online.info/radiation_therapy.html

Wolfgang

Quote:



Bruce, Thank you for your quick response. How did you find the hospital in Germany? I would appreciate any information that you could send me on your resources. I want to do this as soon as possible before it goes any further. It seems to be changing by the day. I don't understand why they don't do radiation in the states.

Thank you, Jennifer


04/17/2007 16:56
MikeN 
04/17/2007 16:56
MikeN 
Re: radiation

Jennifer,
If you are in the early stages I would recommend you try taking Acetyl L-Carnitine. I started taking it almost 2 years ago after 1 bump on 1 hand progressed to several in each. Taking ALC stopped it cold. I still have the bumps but they don't hurt and they have not gotten any worse in almost 2 years. Here is where a group of us posted our results:

http://www.biospecifics.com/forum/readTh...p?forumID=1&;threadID=4477

I went to add an update and was told to move to this forum but it doesn't look like the topic was kept alive.

04/17/2007 17:37
wach 

Administrator

04/17/2007 17:37
wach 

Administrator

old posts

MikeN and Jennifer:

Thanks to Woody we were able to archive all the old BioS posts here before the BioS forum sank in the spam flood.

The easiest way to find something specific is to use the search facility of this forum: click on Search in the above menu, enter Acetyl L-Carnitine and select "search in topics and answers". This will yield about 30 posts on Acetyl L-Carnitine.

Wolfgang
PS: our German forum is currently attacked by spammers. We fight back by deleting the crap, which makes it tolerable. Let's cross fingers that they stay away from this one.

04/17/2007 19:01
MikeN 
04/17/2007 19:01
MikeN 
Re: radiation

Before posting my note to Jennifer I did a search on Acetyl L Carnitine and found the study from the old website. ALL the hits to ALC are in Archives and appear to be read only. It won't let me post an update. Too bad the study group results are not active. I'd like to see annual updates from the people that have had success. ALC seemed to work for me but I started taking it soon after I was diagnosed and the Dups had spread to both hands.

No side affects, the bumps don't hurt and no new bumps in close to 2 years. Prior to taking ALC I went from 1 bump to several in both hands in about 6 months.

04/21/2007 20:33
bstenman 
04/21/2007 20:33
bstenman 
NAC

Below is the information I gleaned with my own Web research:

“N-Acetyl-L-Cysteine abrogates fibrogenic properties of fibroblasts isolated from Dupuytren's disease by blunting TGF-β signalling" J. Cell. Mol. Med. 10 (2006) pp. 157-165.

Cysteine can be found in meat, red peppers, garlic, onions, broccoli, brussel sprouts, oats, milk, whey protein, and wheat germ. However, it is not classified as an essential amino acid, and can usually be synthesized by the human body under normal physiological conditions if a sufficient quantity of methionine is available.


“Cysteine is important for homeostasis, being a key antioxidant, a glutathione precursor, and a natural source of sulfur for metabolism.* Yet L-cysteine is unstable, and can become degraded while being absorbed. N-Acetyl Cysteine, on the other hand, is a more stable antioxidant than L-cysteine and conveniently becomes converted into L-cysteine after being absorbed.* Thus NAC taken orally will raise blood and tissue cysteine levels. As a dietary supplement, NAC is therefore a highly attractive alternative to L-cysteine.* NAC can also be used in place of L-cysteine as an adjunct to the original AntiOx.* Hypoallergenic.”

How Does N-Acetyl Cysteine Work?
L-cysteine is a potent antioxidant that has been used for various viral conditions. The N-acetyl form is better absorbed. “N-acetyl cysteine may help protect the liver from certain toxins, and it helps break up pulmonary and bronchial mucus. N-acetyl cysteine also boosts the levels of glutathione, a powerful antioxidant and detoxifier.”


l-Cysteine and N-acetyl-l-cysteine - highest available purity is from Sigma-Aldrich Chemical Co (Steinheim, Germany)

Sigma Chemical Co., St. Louis, MO
www.sigma-aldrich.com

--

The only source I could find for what I believe is the German NAC is from www.physiciansformula.com. I could not verify this conclusively. Most NAC comes from China and is extracted from human hair and feathers. This is not the case with the NAC produced using the German methond.

I could not find any negative side effects from taking NAC and this product is relatively inexpensive as supplements go.

Bruce

04/27/2007 21:06
bstenman 
04/27/2007 21:06
bstenman 
Re: radiation

I have just completed the first set of radiotherapy sessions in Essen. Although Professor Seegenschmiedt recommended a lotion for my hands I have not been able to find it here in Germany.

Does anyone have any recommendations for lotions availabe either in Germany or elsewhere?

Thanks,

Bruce

04/27/2007 21:54
Jennifer 
04/27/2007 21:54
Jennifer 
Re: radiation

Bruce, I leave for Germany in a few weeks for radiation! My doctor here in the states is strongly advising me not do the radiation. He said people have had some terrible things happen, like burning through to the back of the hand. Have you or anyone else heard of any other problems. You must of had good results. Are you hands tender or sore? Can you use your hands now, or did I read somewhere that for about 4 weeks you need to be careful with them. I would love to hear from you. Also, what is the name of the lotion.

Thank you,
Jennifer

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