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Radiation In Oklahoma City
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09/28/2010 18:03
SamA 
09/28/2010 18:03
SamA 
Radiation In Oklahoma City

Two years ago, I noticed a lump on my left foot. I went to my podiatrist, and she informed me that it was Ledderhose Disease, and the nodule was wrapped around my plantar tendon. She also said that many times these nodules are self limiting in growth, but if it did continue to grow and became painful, the only solution was surgery to remove my plantar tendon which creates a whole new set of painful problems.

My podiatrist gave me a prescription for 15% verapamil gel. It is very time consuming and VERY expensive. It may have helped slightly, but the main thing it reduced was my bank account.

Earlier this year, the nodule on my left foot started to get larger and painful, and I developed one on my right foot which became painful. I knew right then that if a long term solution for my problem was going to be found, I was the one who was going to have to find it.

During this time, I was following the progress of Xiaflex through FDA approval. Xiaflex was approved earlier this year for the treatment of Dupuytren’s Disease. As has been stated on this web site, DD is more cord based, and LD is more nodule based. Xiaflex apparently works for DD, but may or may not work for LD. I have not read or heard of anyone being treated for LD with Xiaflex, so the jury is still out.

Ruling out verapamil and Xiaflex, I discovered a treatment on this web site that has apparently been VERY successful. That treatment is radiation therapy.

I found several studies showing the success of radiation therapy. Also, I read several patient accounts of successful treatment with radiation therapy. Most importantly, however, this web site has a list of clinics in the United States that provide radiation therapy for LD, and here it is:

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

The closest clinic to me was the University of Oklahoma. Here is their information:

University of Oklahoma
Health Science Center
Dr. Terence Herman
Chairman, Radiation Oncology
825 NE 10th Street, Suite 1430
Oklahoma City, OK 73104
Phone – (405) 271-3016

I called them, and they told me that they have in fact successfully treated LD with RT. They told me the patient receives seven radiation treatments in a five day period. One on Monday, two on Tuesday, one on Wednesday, two on Thursday, one on Friday, and then you go home.

Four weeks ago I drove to Oklahoma City to receive the treatments. I can tell you that I have never been around a nicer, more helpful, professional group of people than those at the University of Oklahoma Health Science Center. They were truly outstanding.

I am also happy to report that in the four weeks since my treatments, the nodules are 30% to 40% smaller, and the pain is completely gone. The only side effects I had from the radiation was a slight sun burn effect for a couple of weeks, which the doctors told me I would probably have. A little Aquaphor ointment on my feet easily took care of that. I am now walking pain free on the golf course again.

With twelve locations in the United States offering radiation therapy as a treatment for LD, six of these being university hospitals, it appears to me that the podiatrist community has not been properly educated on this option.

I would like to thank the people who contribute to and maintain this web site. After much searching, I believe it is truly the most informative site on LD on the web. It is well maintained and everyone is very professional with their thoughts. If it was not for this web site, I might not have discovered radiation as a treatment option for LD. Of course, most of all I would like to thank Dr. Herman, the administrative staff, and the radiation therapists at the University of Oklahoma Health Science Center.

09/29/2010 02:54
LubaM. 
09/29/2010 02:54
LubaM. 
Re: Radiation In Oklahoma City

SamA,

So happy to hear that you had a successful RT treatment for your LD.

I also had RT last November at Scripps Hospital in LaJolla CA. with Dr. Tripuraneni..... on my left hand and left foot. The nodules on my left foot are much, much smaller and softer. You should see improvement continuing in the next few months. Mine continued to shrink for about 3-4 months after the treatment. I believe the RT stopped the progression of the disease both in my hand and foot.

I wish I had discovered RT years ago when I started to have a problem with DD in my other (right) hand. This forum has been an amazing source of information filled with wonderful people who take the time to share their experiences and help others. I am forever grateful.

Keeps us posted in the months to come of your continued improvement.

11/23/2010 00:47
Bleu 
11/23/2010 00:47
Bleu 
Re: Radiation In Oklahoma City

A very helpful and informative post for someone (i.e. me) new to the site. Thank you.

11/23/2010 10:09
Larry 
11/23/2010 10:09
Larry 
Radiation Schedule affects Acute Side Effects ??

SamA:
....

I discovered a treatment on this web site that has apparently been VERY successful. That treatment is radiation therapy.

I found several studies showing the success of radiation therapy. Also, I read several patient accounts of successful treatment with radiation therapy. Most importantly, however, this web site has a list of clinics in the United States that provide radiation therapy for LD, and here it is:

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

The closest clinic to me was the University of Oklahoma. Here is their information:

University of Oklahoma
Health Science Center
Dr. Terence Herman
Chairman, Radiation Oncology
825 NE 10th Street, Suite 1430
Oklahoma City, OK 73104
Phone – (405) 271-3016

I called them, and they told me that they have in fact successfully treated LD with RT. They told me the patient receives seven radiation treatments in a five day period. One on Monday, two on Tuesday, one on Wednesday, two on Thursday, one on Friday, and then you go home.


Hallo SamA

THat sounds like a pretty heavy RT schedule and is not the schedule published by the German groups who seem
to have the longest and best documented experience in the world: they use 5 x 3 Gy (1 week) a break of 3 months
and then a secound round with 5 x 3 Gy (1 week); they have not published sun-burn like side-effects ! I myself
had treatment with Prof. Seegenschmiedt - formerly in Essen - exactly to that RT concept and it went very well.

I had no ACUTE SIDE EFFECTS nor had I any CHRONIC SIDE EFFECTS like dryness of skin etc.

http://www.dupuytrensymposium.com/Abstra...nschmeidt_2.pdf (published Abstract 2010 on Ledderhose)

So it will be interesting to follow your case and the side effects in the long-run, SamA !

By the way, what did You pay for the treatment, beacuse mine was about 1.200 EURO ~ 1.500 USD for 2 feet ?
What were the CPT codes they used for billing etc. I would appreciate your help in getting more billling information !

Thx in advance , Larry

12/24/2010 15:02
SamA 
12/24/2010 15:02
SamA 
Re: Radiation In Oklahoma City

It has now been four months since I had radiation therapy for my LD. I am happy to report that since my first post, the nodules have continued to shrink. They are now 60% to 70% than their original size and have become softer. I continue to be pain free. The only reason I was able to have this “quality of life” changing treatment was the information I obtained on this web site. I also want to again thank Dr. Herman and the staff at the University of Oklahoma Health Science Center Department of Oncology.

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