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Radiation Therapy
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12/01/2008 04:38
pgiovingo 
12/01/2008 04:38
pgiovingo 
Radiation Therapy

I will be heading to Oklahoma City, OK (from Louisiana) next weekend to have radiation therapy, in hopes of slowing down the progression of the Dupuytren's in both of my hands. I will post about my experience when I return the following weekend. Wish me luck!!

12/01/2008 07:20
patandpaula 
12/01/2008 07:20
patandpaula 
Re: Radiation Therapy

Good luck and please keep us posted; I am considering Oklahoma for RA for myself, so please let us know how it goes. Which doc are you seeing? THanks

Paula

12/09/2008 00:39
pgiovingo 
12/09/2008 00:39
pgiovingo 
Re: Radiation Therapy

Day 1: We made it to Oklahoma last night after a 10 hour drive from Louisiana. My appointment with Dr. Herman at OU Health Sciences Center was at 9:00 this morning. Dr. Herman couldn't have been nicer! He couldn't believe I came all the way from Louisiana to have my hands treated. He said he couldn't understand why radiation therapy for Dupuytren's wasn't an option in other states other than the few it is. He said the success rate was really good (approx. 90%) if it is treated early enough. Dr. Herman said the only side effects I might have would be redness and dryness of my hands in about a week or so. I was given a physical by a PA, then Dr. Herman came back in and carefully felt my hands for the diseased areas. He drew the area of my hand that would receive radiation. Next I was taken to Radiation Therapy to have molds made for my hands to be placed in during the therapy, and the lead mold that would protect the part of my hand not receiving radiation. I was given my appointments for the rest of the week and told to come back at 3:30 this afternoon. Everyone was so nice and really went out of their way to make me feel comfortable. We got back to the clinic around 3:15 and I was out by 3:30. The actual treatment took no longer than 10 minutes. It took longer to get me lined up under the machine than it did the actual treatment. I will take 2 treatments tomorrow, 1 Wednesday, 2 Thursday, and one Friday. I will write more tomorrow.

12/09/2008 08:57
newman 
12/09/2008 08:57
newman 

Re: Radiation Therapy

Hi Australia Calling.
I was surprised to read that your were receiving your whole treatment in 1 week. Two treatments being administered in one day on two occasions. With regards to side effects I started with the moisturising creme containing Urea immediately after the treatment . This worked for me and I had no redness and little drying of the skin.
It is a good idea if you are able to receive a photo copy of the area being treated by RT or a digital photograph, that you can file incase you ever need to have further radiation . Are you receiving the 7X 3 Gy protocol .(total of 21 Gy. ) Interestered in how is all goes.

Edited 12/09/08 11:02

12/10/2008 07:13
bstenman 
12/10/2008 07:13
bstenman 
Re: Radiation Therapy

I found it interesting that a doctor at a university health center was willing to undertake the treatment. The only place in California I could locate a doctor to manage the treatment was at the San Francisco University Medical Center where they also had more interest in new treatments than in potential liability for a procedure that is not considered "standard practice" by the AMA and their lawyers and lobbyists.

12/11/2008 02:11
Megan 
12/11/2008 02:11
Megan 
Re: Radiation Therapy

Quote:



I found it interesting that a doctor at a university health center was willing to undertake the treatment. The only place in California I could locate a doctor to manage the treatment was at the San Francisco University Medical Center where they also had more interest in new treatments than in potential liability for a procedure that is not considered "standard practice" by the AMA and their lawyers and lobbyists.



When I was talking to Dr. Kuhn in Boise about radiation for Dupuytren's, she expressed surprise that so few radiation oncologists were treating this...she told me it is in the handbook that is considered to be their "bible." I understand that most of the insurance companies cover it (mine has...so far...) so they must be considering it as a standard treatment. You'd think the insurance companies would be the last party to accept it as a standard treatment!!! Funny to think that the insurance companies are more open to radiation treatment than the hand surgeons are!

Megan L


Edited 12/11/08 04:14

12/11/2008 06:16
newman 
12/11/2008 06:16
newman 

Re: Radiation Therapy

Hi Trev Australia Calling.
It seems you are still not convinced on RT. RT.is the only thing so far for me ,that has stopped the progression of Dupuytrens and Ledderhose. I could not be happier. No more of that itchy growing feeling in the hands etc. The cords in my feet have reduced 50% to 75 %.I did not have the thick band of cords in the hands when I had RT. but, I certainly know what you are talking about having had them removed in surgery years ago. Just last week I met a Surgeon who had a dupuytren's band running cross ways on both hands and he certainly was interested in what I had gone through. He did not want surgery even though a friend of his was a well recognised hand surgeon. The idea is to stop the progression. You have nothing to loose. Regards.

Edited 12/11/08 08:18

12/11/2008 22:48
TrevB 
12/11/2008 22:48
TrevB 

Re: Radiation Therapy

Hi Newman
It’s mainly the cancer risk (especially long term) that bothers me. I’m sure that RT does a terrific job for the vast majority but at what risk. When you have many family members who’ve had cancer, one does worry about genetic predisposition and whether I may actually be at a higher risk from RT than someone from a clean family? If I was 15 years older I might feel slightly more comfortable about it. At the hospital I had a couple of minutes with the doctor after a consultation with one of his colleagues. I think he said he’ll do the whole palm but am not really sure until I go for the pre-meeting. I just felt a little rushed and that I’m going down a route I’m fairly uncomfortable with but I might regret not taking the opportunity.

In my ignorance I also think 30Gy is quite high but 21Gy was not an option and I’m sure stopping at 15Gy would be like not taking a full course of antibiotics prescribed.

I’m naturally cautious and indecisive, not a good combination at this time.

Trevor

Cambidgeshire, UK.

12/12/2008 01:15
pgiovingo 
12/12/2008 01:15
pgiovingo 
Re: Radiation Therapy

I am almost finished with radiation therapy - one more treatment left to go tomorrow morning. Australia questioned the dose - I will have received 7 x 3 Gy after tomorrow. On the days I had two treatments, I waited 6 hours between doses. It was administered all in one week because I traveled 10 hours from home to Oklahoma City. Dr. Herman assured me the risk of cancer from radiation was extremely low. He also told me the success rate was very high - 90% - if treated early. He told me that in some cases the disease will regress, and at the least, it shouldn't progress. Also, he did not do the entire palm. He carefully felt the palm of my hands for the diseased tissue and outlined that area with a pen. That is the only area that received radiation. My left hand is worse so that hand had a larger area that received radiation than my right hand. A lead shield was cut to cover and protect the rest of my palm.

Megan, If I remember correctly, Dr. Herman told me it would take a week or so for the redness to appear in my palms. Can you tell any difference yet in your hands? The nodules seem to be a little softer in my palms. I am very hopeful that the radiation will help!

If anyone has any questions about my experience, please feel free to e-mail me at pgiovingo@cox.net. I will be glad to answer any questions. I will update as to any changes I notice once I get back home.

12/12/2008 06:43
newman 
12/12/2008 06:43
newman 

Re: Radiation Therapy

Hi Trev, Australia Calling.
I did mention before that my right hand had only received the 15 Gy.RT. (5 X 3 Gy. ) Some six months later the index finger on my left had had another dose of 15 Gy.RT. (30 Gy.) The single dose on my right hand did the trick. Wolfgang has also reported as having a half dose on his finger. Regards.

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