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Radiation therapy and Cortisone injections.
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10/07/2009 18:21
lori 
10/07/2009 18:21
lori 
Re: Radiation therapy and Cortisone injections.

Allisun,

Treat you with what? You said you do not have contracture. If they only treat contracture, that is treated different from nodules and cords. I just finished my radiation treatment, and am very pleased with the result. My hand continues to improve and except for a little dry skin when I over use it, you can hardly see my nodule or cord. I did not have contracture. Yes I am older, but there have been quite a few on this forum who are younger and have used radiation with positive results.

From what I have read on this forum. the younger you are could mean the more aggressive it grows. Mine grew quite fast, less than 6 months from a sore spot to a nodule and cord. I was not about to wait for contracture to treat it when the radiation literature was so well documented as to positive results.

Lori

10/08/2009 01:52
flojo 
10/08/2009 01:52
flojo 
Re: Radiation therapy and Cortisone injections.

Allisun,
Information and my experience with Dr. T at Scripps was different from what you were told. I am older, however the key is that you get RT before contracture. RT will not release the contracture. I had some contracture, 10-20 degrees and had NA with Dr. Denkler first to release the contracture. Dr. T said that was the proper sequence since I already had contracture. It is important to have your hand flat when receiving the RT, plus the contracture will have to be released some other way than RT anyway. I had not found this website, so I did not know anything about RT or I would have had RT before any contracture began.

My goal was to stop the progression even if it did not improve the existing nodules and tightness. My hand did improve significantly in the 1st month and, surprisingly, I continued to see improvement for another month. It has been 2 1/2 months now. I can't imagine that there is much more improvement that RT will do, but maybe it will slowly improve even more.

I would recommend that you go to someone else for a second opinion. I had good success with Dr. T at Scripps & Diana has had a good experience and success with Dr. Chang. Dr. T. has been doing RT for several years and is knowledgeable about radiation in general and also as it relates to Dupuytren's. He will be honest about the risk as he was with me (<2% increased risk of cancer only on the radiated area after 25 years which to me is a very slight risk.) I'm 71, so in 25 years I'll be in my 90s, but the rate of progression of my Dupuytren's would have ultimately been debilitating. I was very willing to take that slight risk to stop the progression. Also, the success rate is said to be 66%. I was just hoping that I would be in that successful % and all indications are that I am. Having RT at an early stage of Dups and that it is active at the time of RT increases the likelihood of it being successful.

Everybody has to make their own decision. This website is the right place to get information and anecdotal information to help you decide what is best for you.

11/04/2009 19:12
bstenman 
11/04/2009 19:12
bstenman 
Re: Radiation therapy and Cortisone injections.

Dr. Penny Snead at the UCSF Medical Center was the first doctor I was able to find to perform XRT on my hands in the USA. She agreed to do so on the basis of her knowing Dr. Seegenschmiedt as a respected researcher and being able to use the treatment diagrams he had produced after my visit to the clinic in Essen.

From my experience with NA and then XRT it was a matter of scheduling the trip to Germany. It was clear to me that Dr. Seegenschmiedt had a great deal more experience with people with Dupuytren's and his palpating of my hands produced a much greater area to be treated on one of my hands than had been noted by Dr. Denkler a couple months earlier when the NA was performed. I would be concerned that a doctor without hands on experience with Dupuytren's patients would be able to accurately diagnose the area that needs to be treated.

03/28/2012 01:34
RichSF 
03/28/2012 01:34
RichSF 
Re: Radiation therapy and Cortisone injections.

moondanc
Hi I'm new (6 weeks)and in the process of seeing all the docs you referred to .. I Saw Gottschalk last friday,(3/23/2012) will see Chang next week and waiting to set it up with Snead...
I'm even thinking of going to Germany...

Ive got 2 small hot nodules in the web section of my left hand between my thumb and index finger and a small cord in that area too. I also have a small cord undrer my pinky in my right hand. I'm 68 and live in the Bay Area.

I'm curious, this was posted a few years ago and i'm wondering how you did, what you found out, what you did and how you are now...
pls reply..
RichSF

moondanc:
A have a couple questions:
1. Has anyone had experience with radiation therapy with Dr. Pauling Chang, of Palo Alto Medical Foundation in Palo Alto, CA--he is listed on this website.
2. Has anyone had experience with Dr. Snead at UCSF Med Center?
3. How about Dr. Alex Gottschalk at the UCSF Mt. Zion campus/Cancer Center, 1600 Divisadero. The new patient scheduling person is at (415) 353-9807.
4. Should one have radiation therapy before NA or after? Before cortisone-- or does it matter.
5. What are the pros and cons-- yur thoughts and opinions-- of getting RT in the US vs. Europe where they have more experience and what is the risk if I'm at stage 1 or 2 rather than 0 or 0/1 which is what is recommended for RT?

I had NA in 2004, collagenase in 2007 and a month ago another NA procedure. My DC is progressing so fast I can almost see the daily changes in the 4 weeks since my NA and also in my other hand. I'm going to get a cortisone shot next week in hopes that it will soften some of the nodules remaining my right hand. Once the right hand has healed, I need to have even more extensive NA on my left hand and then want to see if there's anything that will help slow down the recurrence.

I'd really appreciate any information and advice. Thanks very much.


09/05/2012 22:06
Tactician 
09/05/2012 22:06
Tactician 
Re: Radiation therapy and Cortisone injections.

RichSF:
moondanc
Hi I'm new (6 weeks)and in the process of seeing all the docs you referred to .. I Saw Gottschalk last friday,(3/23/2012) will see Chang next week and waiting to set it up with Snead...
I'm even thinking of going to Germany...

Ive got 2 small hot nodules in the web section of my left hand between my thumb and index finger and a small cord in that area too. I also have a small cord undrer my pinky in my right hand. I'm 68 and live in the Bay Area.

I'm curious, this was posted a few years ago and i'm wondering how you did, what you found out, what you did and how you are now...
pls reply..
RichSF

moondanc:
A have a couple questions:
1. Has anyone had experience with radiation therapy with Dr. Pauling Chang, of Palo Alto Medical Foundation in Palo Alto, CA--he is listed on this website.
2. Has anyone had experience with Dr. Snead at UCSF Med Center?
3. How about Dr. Alex Gottschalk at the UCSF Mt. Zion campus/Cancer Center, 1600 Divisadero. The new patient scheduling person is at (415) 353-9807.
4. Should one have radiation therapy before NA or after? Before cortisone-- or does it matter.
5. What are the pros and cons-- yur thoughts and opinions-- of getting RT in the US vs. Europe where they have more experience and what is the risk if I'm at stage 1 or 2 rather than 0 or 0/1 which is what is recommended for RT?

I had NA in 2004, collagenase in 2007 and a month ago another NA procedure. My DC is progressing so fast I can almost see the daily changes in the 4 weeks since my NA and also in my other hand. I'm going to get a cortisone shot next week in hopes that it will soften some of the nodules remaining my right hand. Once the right hand has healed, I need to have even more extensive NA on my left hand and then want to see if there's anything that will help slow down the recurrence.

I'd really appreciate any information and advice. Thanks very much.

Does anyone know any doctor or hospitals in the Boston area doing work with rt or cortisone therapy? I'd appreciate any information. Thanks...


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