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5 months after RT in Colorado, U.S.
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04/12/2015 17:27
susie

not registered

04/12/2015 17:27
susie

not registered

Re: 5 months after RT in Colorado, U.S.

Thank you, chewie! I hope your RT went well. I've thought of you often. Thanks, too, for the Facebook link. I look forward to looking at it.

03/23/2017 20:16
bdiamond 
03/23/2017 20:16
bdiamond 
Re: 5 months after RT in Colorado, U.S.

Hi all...Im newly diagnosed with Dupuytren...meaning today...lol. Actually I self diagnosed about 2-3 weeks ago, but saw the hand surgeon today. Not impressed but not surprised. He suggested I wait until I have disability and then will do injections and maybe surgery down the road. He was not familiar with radiation except that it was "new" and data was too new to know about long-term outcomes. Well...I work in the nursing/medical field (so understand the limitations of early interventions) and being a BRCA+ person who went thru mastectomy and hysterectomy to prevent cancer...a little radiation to save the use of my right hand seemed like an obvious "GO FOR IT" kind of treatment. I know this post is old...but Im hoping maybe you guys still get messages. I was wandering how you guys are doing now a few years out from radiation. I spoke with a radiologist I work with who recommended Dr. Kavanaugh...so I was excited to see that in fact many of you had seen him at some point. I have a referral in and Im hoping to see him in the next coupe weeks so I can hopefully start RT sooner than later. The cord in my hand started only a few months ago, but I feel like it is progressing quickly...although maybe Im just obsessed with it now. Not sure if I have other small ones starting, I hadnt really thought about checking. But I was wandering does Dr. Kavanaugh inspect both hands and feet? The surgeon barely did an exam of the right hand, and certainly never asked about my feet :)

Thanks

03/24/2017 04:39
wach 

Administrator

03/24/2017 04:39
wach 

Administrator

Re: 5 months after RT in Colorado, U.S.

Hi bdiamond,

welcome to the club and to our forum! I myself had mý first RT about 30-35 years ago and that finger is still fine. The skin became a little drier in the irradiated area but now, after so long, you can't tell a difference anymore.

Why don't you just ask Dr. Kavanaugh to also have a look at your feet? Many doctors are just inspecting the hand(s) because that's where the disease is most frequent but, of course, it makes sesne to also check the feet.

Wolfgang

bdiamond:
Hi all...Im newly diagnosed with Dupuytren...meaning today...lol. Actually I self diagnosed about 2-3 weeks ago, but saw the hand surgeon today. Not impressed but not surprised. He suggested I wait until I have disability and then will do injections and maybe surgery down the road. He was not familiar with radiation except that it was "new" and data was too new to know about long-term outcomes. Well...I work in the nursing/medical field (so understand the limitations of early interventions) and being a BRCA+ person who went thru mastectomy and hysterectomy to prevent cancer...a little radiation to save the use of my right hand seemed like an obvious "GO FOR IT" kind of treatment. I know this post is old...but Im hoping maybe you guys still get messages. I was wandering how you guys are doing now a few years out from radiation. I spoke with a radiologist I work with who recommended Dr. Kavanaugh...so I was excited to see that in fact many of you had seen him at some point. I have a referral in and Im hoping to see him in the next coupe weeks so I can hopefully start RT sooner than later. The cord in my hand started only a few months ago, but I feel like it is progressing quickly...although maybe Im just obsessed with it now. Not sure if I have other small ones starting, I hadnt really thought about checking. But I was wandering does Dr. Kavanaugh inspect both hands and feet? The surgeon barely did an exam of the right hand, and certainly never asked about my feet :)

Thanks

03/24/2017 15:33
susie

not registered

03/24/2017 15:33
susie

not registered

Re: 5 months after RT in Colorado, U.S.

Hi bdiamond,
Since I had noticeable nodules in my feet and my hand, it was a subject I brought up in my consultations. I think it's a good idea for you to ask about your feet, as well. Dr. Kavanaugh was very knowledgable about the condition and how to treat it with radiation. He kindly sent his protocol to his colleague near my home, as I live far away from Dr. K's office. I also found a new surgeon (first one said there was nothing he could do until it was time for surgery and he had not heard of radiation).
Despite the fact that this disease is more common than I realized, I still had to look for the right team who understands how to treat it.
It sounds like you know all too well how to address health challenges and you are comfortable in the medical arena, so I'm confident you will find the right fit for you.
best of luck to you :)
susie

03/24/2017 16:59
susie

not registered

03/24/2017 16:59
susie

not registered

Re: 5 months after RT in Colorado, U.S.

also, to answer the other part of your question: My feet did very well with radiation and are stable and pain free. My right hand worsened in the last year, developing more cords and contractions. Perhaps the radiation slowed the progression, but it's hard to know. I just had Xiaflex injections recently and am in physical therapy.

04/01/2017 18:36
dpjcrfsh 
04/01/2017 18:36
dpjcrfsh 
Re: 5 months after RT in Colorado, U.S.

@bdiamond, I'm curious how long after your mastectomy etc that your Dupuytren's showed up. Sometimes major trauma like surgery causes Dupuytren's to activate.

06/07/2017 22:35
criddle1970 
06/07/2017 22:35
criddle1970 

Re: 5 months after RT in Colorado, U.S.

susie:
I had my follow-up visit with Dr. King in Grand Junction, Colorado today, 5 months after RT for both feet and my right hand. I am doing incredibly well. I have a very physical occupation where I use my hands and stand on my feet all day. I was worried about losing function in my feet and hands.
My hope was to just stop the rapid progression of the disease, but it seems I'm getting better results than I expected. I no longer have pain in my feet and the nodules are softening in both feet and my hand.
I feel positive about my experience and I'm glad I went through with the treatment. Dr. King is so caring and knowledgeable. And the staff is wonderful.
If anyone lives on the western side of the state of Colorado and is in need of RT, please feel free to contact me. I'm happy to refer you and give you support.
All the best to everyone.
Susie
Hi Susie, I'm thinking about going to Dr. King in Grand Junction. Do you know how much experience and knowledge he has with Dupuytrens? What were the stages of your hands prior to RT. I have huge nodules with a cord on one hand the other hand is similar. I'm just to the point where I cant completely lay flat one of my hands and I'm sure the other is right behind. I am progressing at a very fast rate. Although I've had LD for around 10 years now, my DD is less than a year old. Was this your very first treatment for your DD? Any other help would be greatly appreciated. Thanks, Rob

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