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New here RT on Monday
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11/01/2013 13:14
Ipster 
11/01/2013 13:14
Ipster 
New here RT on Monday

Good morning all.

I'm so glad to have found this outlet to learn more. I am in my mid 40's and discovered a nodule in November 2011 in my dominant hand. I went to the hand specialist in Feb 2012 where I was diagnosed with DD. I had never heard of it and don't know anyone in my family who has had it. I thought it was a lump that could be removed. I passed the table top test and the doctor told me what most people have been told that nothing can be done until there is 30 degree contracture. At that time it wasn't bothing me and I was able to go on with my life without even noticing it.

Around June 2013 I noticed the nodule more and it was starting to bother me especially after activity. I am extremely active and was not happy with the wait and see answer. I did some research and found a new doctor and asked to have a cortizone shot. I've had my second shot in the nodule last month but since June I've noticed from the nodule there is a cord? under the skin that extends approximate 1.25" from the nodule toward the bottom of my hand. The nodule gets red after playing tennis and the cord? feels tingling and I can no longer go through a day without noticing it or having it bother me.

Last month when I was at the hand doctor and I told him that the nodule was bothering me after activity he told me that he could remove the nodule surgically but it would most likely return. He said he has removed painful nodules for patients. I really don't want to have an operation if I don't have to. Since my cortizone shot 3 weeks ago it hasn't been feeling any better so I started researching other options. I have been reading more about RT and noticed there was a place close to me that offered RT to treat DD. I had a consulatation this week and I start RT on Monday.

My hopes for RT are that I will no longer have that tingling feeling and that when I use my hand for activity (tennis, weight lifting, etc) that it doesn't hurt after. I went through the first year after being diagnosed being able to live my life with DD and not have it noticeable every day and I'd really like to get back to that point. I am MAD that the doctor's don't tell you that you have other options except to wait until you develop contracture. I wish I had known during that first year when it wasn't bothering me that I could get RT. Not having known anyone who has had DD I didn't have anyone to talk to about what I was going through.

I just wanted to say Thank You to everyone who has posted their experiences because it has been extremely helpful to me and has allowed me to be proactive.

11/01/2013 13:55
Jolene 
11/01/2013 13:55
Jolene 
Re: New here RT on Monday

Hello,

I completed first round of RT on both hands Sept 13th. The week after RT was the worst. The tingle, burning, crawling sensation was pretty intense and painful. Each week the hands calmed down. It has now been 7 weeks since my 1st round and I have NONE of the symptoms. No Pain, No tingle, crawling burning sensation. For the 1st 4 weeks I did drive with gloves on. It seemed to help the discomfort.

The small nodule I had is gone. The underlaying cords are gone. The pain I had in my thumb and cord in the thumb web GONE.

So if you expereince worse symptoms at first Do NOT panic. This has happen to other as well.
Right now the only symptoms I have is the palms are very dry, yet very manageable.

Where have you had your RT done?

Edited 11/01/13 15:56

11/01/2013 14:40
spanishbuddha 

Administrator

11/01/2013 14:40
spanishbuddha 

Administrator

Re: New here RT on Monday

Welcome Ipster

I play tennis and have nodules and cords in my racquet holding hand (older player style = one handed both sides). I recommend you wear a tennis glove. I find it is just fine, still have touch and feel, and in fact better hand/wrist/grip strength. Example http://www.bionic-glove.co.uk/index.php?...p;products_id=6. Worth trying? No problems after RT either, with the tennis. I have seen and heard from other players that I met, that in fact they were able to play even with quite a contracture!

11/01/2013 15:02
Ipster 
11/01/2013 15:02
Ipster 
Re: New here RT on Monday

Jolene: I'm having my RT done at First Coast Oncology in Jacksonville, FL. Your experience gives me hope! Thank you for sharing. Did you have five days straight of treatment? I'm having 5 days with 6 weeks off and then another 5 days.

Spanishbuddha: I recently had some overuse symptoms in my right hand not related to the DD and I bought that exact bionic glove for tennis and used it until my hand improved. I'm going to start using it again. Have you had successful RT?

11/01/2013 16:02
Jolene 
11/01/2013 16:02
Jolene 
Re: New here RT on Monday

Hello,

It’s great to know you were treated in Jacksonville Florida. That is much closer to my home. Do you have the phone number?

I had 3gy x 5 days. My oncologist (New Port Richie, Florida) is following Prof. Seegenschmiedt 12 week break protocol.

I had both rounds of RT on the left foot. At that time it was 8 week break. When I returned in Sept 2013 for round 2 of the left foot I began round 1 of the hands. At that time (in Sept) the oncologist changed the length of the break.
I do welcome the longer break.

Edited 11/01/13 18:04

11/01/2013 16:07
Ipster 
11/01/2013 16:07
Ipster 
Re: New here RT on Monday

Jolene: The website is: http://www.firstcoastoncology.com/

10881 San Jose Boulevard
Jacksonville, Florida 32223
Phone (904) 880-5522
Fax (904) 880-5533

On their website under Diagnostics and Treatment:

Treatment of Non-Cancerous Conditions

•Dupuytren's Contracture/Ledderhose Disease Click for more information.
•Graves' Disease
•Keloids

11/01/2013 16:12
Jolene 
11/01/2013 16:12
Jolene 
Re: New here RT on Monday

Thanks.

That is great news! How did you find them?

Also when you return please ask the oncologist if you can have RT a 3rd time on the same area?

I ask because I had both round on the foot. I have 2 new nodules. I am hoping a 3rd round will be allowed.

11/01/2013 17:07
Ipster 
11/01/2013 17:07
Ipster 
Re: New here RT on Monday

Jolene: They are listed right here on the site under clinics http://www.dupuytren-online.info/radiotherapy_clinics.html

11/01/2013 17:23
spanishbuddha 

Administrator

11/01/2013 17:23
spanishbuddha 

Administrator

Re: New here RT on Monday

Ipster:
Jolene:
Spanishbuddha: I recently had some overuse symptoms in my right hand not related to the DD and I bought that exact bionic glove for tennis and used it until my hand improved. I'm going to start using it again. Have you had successful RT?
I had RT on my non racquet hand a couple of years ago. Successful? Hmm... No reduction in nodules or cords, but a reduction in 'active' symptoms such as tingles, aches, tenderness. However, there is a new nodule in the radiated area and also one on the edge of the radiated area. The mere fact it has not progressed to a contracture is a win in my eyes, even though this may have been the case anyway without the treatment.

On my racquet hand I am halfway through RT, had the first round in August, back soon for the second round. Still playing tennis with that hand with no problems. Again, and quite quickly this time, there has been a reduction in 'active' symptoms.

Returning to your comment about 'wait and see', that is a valid recommendation as the majority of cases slow down and do not progress to contracture or do so slowly, but it has to be an individuals choice IMHO at what point and whether to do something. Many physicians are not aware of all the choices.

11/01/2013 17:30
Ipster 
11/01/2013 17:30
Ipster 
Re: New here RT on Monday

Thanks Spanishbudda. I'm being more proactive and decided on RT because things are more active and I'm having more discomfort. Wishing you the best with your most recent round of RT.

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