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New here but not to the disease - hello wolfgang
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06/21/2014 14:47
pia2some 
06/21/2014 14:47
pia2some 
Re: New here but not to the disease - hello wolfgang

brucergoldberg:
i know about the re-occurance - had that in my foot. you seem to know quite a bit. DO you think RT really works?

I've never really researched it extensively because my hands were too far advanced for RT. But from hearing people on this forum and on the Facebook page talk about RT, there seems to be good success with it. It's worth looking into.

~ dawn

06/21/2014 15:12
brucergoldberg 
06/21/2014 15:12
brucergoldberg 
Re: New here but not to the disease - hello wolfgang

ok so I'm on the right track?

06/21/2014 15:16
pia2some 
06/21/2014 15:16
pia2some 
Re: New here but not to the disease - hello wolfgang

brucergoldberg:
ok so I'm on the right track?

Sure, it can't hurt to look into it. I think your first step is to see the hand specialist. Have him assess your hands and give his advice.

~ dawn

06/21/2014 16:01
brucergoldberg 
06/21/2014 16:01
brucergoldberg 
Re: New here but not to the disease - hello wolfgang

has anyone ever had RT and it helped the knuckle pads?

06/21/2014 18:04
spanishbuddha 

Administrator

06/21/2014 18:04
spanishbuddha 

Administrator

Re: New here but not to the disease - hello wolfgang

Hi Bruce

Welcome to the forum, from me. My standard advice is start keeping a record with photos. Record should be of symptoms, and the photos will back up any perceived changes. That way you have objective evidence on changes and the rate of change.

Your knuckles don't seem so bad from the photo but of course it's all relative. Mine are quite evident and sometime swell up quite large but rarely hurt, and have always subsided back, but still evident. I have had RT on both hands after reading ProfS papers that show something like 85% success rate when caught at the right time. Success is not a cure but a slowing down of progression to contracture, and we have people on the forum reporting both success and failure. I think with your tiredness and thyroid problems you should consult your general physician before considering RT. Until there is a contracture the other established treatment options are pointless.

Impressive foot scarring, ouch. I have a pinkie finger amputation which is so well done, sculptured, colleagues I work with are often surprised when they are eventually told I have it missing since they had not noticed. There are some success stories with RT and Ledderhose, but cryosurgery too seems a less damaging way of managing it than surgery if fibromas become too painful to stand or walk with.

Best wishes

SB

Edit to add the RT has not improved my knuckle pads, and in fact one is playing up now, although to be fair the depth of radiation penetration is controlled to be effective on the palm side. But, having said that a side effect was to 'cure' some minor skin keratosis on one thumb.

Edited 06/21/14 21:09

06/24/2014 02:38
brucergoldberg 
06/24/2014 02:38
brucergoldberg 
Re: New here but not to the disease - hello wolfgang

you may know this , has anyone been successful with just a normal oncologists office?

06/24/2014 02:40
brucergoldberg 
06/24/2014 02:40
brucergoldberg 
Re: New here but not to the disease - hello wolfgang

does anyone have luck with just a regular oncologists office?

06/24/2014 17:49
MikeNinerSeven 
06/24/2014 17:49
MikeNinerSeven 
Re: New here but not to the disease - hello wolfgang

In British Columbia I was just referred to the local Cancer agency which has just started to treat DD. I have not had my appointment yet.

MikeNinerSeven

06/24/2014 19:10
moondanc 
06/24/2014 19:10
moondanc 
Re: New here but not to the disease - hello wolfgang

brucergoldberg:
you may know this , has anyone been successful with just a normal oncologists office?

Yes, that's what I did--a radiation oncologist for RT. Luckily another patient had proceded me and provided the oncologist with all the research and Dr. S's routine. Take a look at the link to the list below and you will see that many of the places listed are cancer centers. In fact, there's one in Austin, TX.

http://www.dupuytren-online.info/radiotherapy_clinics.html

06/24/2014 19:48
brucergoldberg 
06/24/2014 19:48
brucergoldberg 
Re: New here but not to the disease - hello wolfgang

i have an appointment thursday with someone here in dallas but its not someone who has done this before. But they knew right away what to do when i called them.

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