| Dupuytren's in Florida |
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05/26/2011 14:38
BetNY 
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05/26/2011 14:38
BetNY
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Re: Dupuytren's in Florida
Going back to the Radiologist in the afternoon. They are just doing CT scans. Nothing had been said about MRI.
LoriW what did you mean by "since we already have the casts made". Again, I was not told about casting my hands???
Will be doing the RT for both hands 2nd week in June.... Also, was the radiation done on the palm??? Just checking, making sure he is doing just like everybody's????
Betty
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05/26/2011 17:12
cindy850 
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05/26/2011 17:12
cindy850
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Re: Dupuytren's in Florida
Wow that was a lot of money for that. I did 10 days of treatments and my complete bill with everything was under $5,000. I can get all of my papers out and make sure. I had a deductible and ins picked up the rest. But what goes around comes around. Because 15 months later and i have no medical ins. because of hands. Every time i fill out a app with ins i get turned down because of hands or they put me at high risk and then ins cost is around $700 a month. I'm confused. Anybody else having this problem?
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05/26/2011 17:54
lauriw 
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05/26/2011 17:54
lauriw
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Re: Dupuytren's in Florida
Betty,
Casts is probably not the right work. They made these metal shields that goes over my hands to make sure that the radiation only hits the part of the hands that he wants. Most of both palms were radiated because I had active DD pretty much everywhere and he went with the margins that Dr. S suggests.
I pay a bundle for my health care, so I figure I'll pay through the nose until I can be on Medicare. The only good thing is at least I get some benefit now with my hands. I pay over $850.00 a month just for me.
LauriW
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05/28/2011 12:00
BetNY
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05/28/2011 12:00
BetNY
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Re: Dupuytren's in Florida
By the way, I am starting my RT on June 6. I am excited and nervous at the same time!!!! 
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05/28/2011 12:18
wach  Administrator
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05/28/2011 12:18
wach Administrator
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Re: Dupuytren's in Florida
If you are treated with x-rays, the body must be protected. This is not required Iif you are treated with electron beams because those can be focussed and will not affect other parts of the body. You find pictures of both type of treatment on http://www.dupuytren-online.info/radiation_therapy.html.
Wolfgang
BetNY:
Do you know of any one else that had that done. When I asked the Radiologist whether he was going to cover any body parts, he said that its not necessary, since its just low dosage. Its very safe.... hmmmmmmm. 
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05/28/2011 14:25
lori
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05/28/2011 14:25
lori
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Re: Dupuytren's in Florida
Betty,
Good luck on June 6th. If you do as Wolfgang recommended and look at the example of what someone getting RT looks like, you will see my hand, palm up facing the machine. The part of the machine that is over my hand is made up of a material that blocks radiation. This material had an oval area cut out in it. The oval area allowed the radiation to treat my hand while the rest of my hand was protected by that material. Since I only needed the center of my hand treated, that area went from my middle finger to my wrist. If you need to further see what it looks like, I might have a picture that shows more. I know it is not a great picture but I will email it to you if you like.
Good luck and I know you are nervous, I was. I wondered am I doing the right thing, will it work? My mind was constantly cycling it over and over and I didn't stop wondering until I stepped up to the machine.
I hope your outcome will be as good as mine is. Remember to take pictures of before, during and after your treatments so you can document your progress.
Lori
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05/28/2011 16:44
BetNY
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05/28/2011 16:44
BetNY
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Re: Dupuytren's in Florida
Thank you Wolfgang and Lori:
I have looked at that link so many times, never did I realized that RT could be done in 2 different ways.... I thought it was one and the same.... 
When I was there yesterday..... The Radiologist marked my hand, like yours Lori.... and then they traced it with some sort of clear plastic paper. I did not know why. I thought they were going to do a comparison with the CT scan. Now, I am understanding why, they were getting ready to do make the circle so that only my palm where I need it gets it, and not the rest.... Lori, yours was an oblong, and mine, is going from my pointer to my pinky...
Now, I am more at ease... Thank you Wolfgan for showing that link; and thank you Lori for explaining what had happened there yesterday.
Lori, how long ago have you done your hand. How is it doing now. Does it feel like it used to??? Have you had dried hands prior to the procedure..... My hands are so dry now; I wonder if it has something to do with the lose of collagen.
I just ordered a cream on the internet... I read here that Urea Cream is good to use after radiation, just in case, but really I need it down.... I should have it in a few days and I will start using it prior to my RT.
I will take pictures of both my hands prior to it.....
Betty
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05/28/2011 23:19
flojo
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05/28/2011 23:19
flojo
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Re: Dupuytren's in Florida
I have terribly dry skin, and after RT on my hand, I can't tell any difference at all now. There was a slight peeling after about a week in two small areas. I've had sunburns far worse. My RT was with the 5 days x 2g x 2 weeks for 20g total of electron RT.
If Dups on my left hand progresses and I have to have RT, I plan to have it done at Loma Linda UMC. Based on research he has done, Dr. Katerelos plans to use the 7 days x 3g protocol. I would expect that to cause drying.
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05/29/2011 02:13
BetNY
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05/29/2011 02:13
BetNY
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Re: Dupuytren's in Florida
FLOJO....
could you send me the link as to what Loma Linda is doing and their results????
Since I have not done anything I could suggest it to my doctor next week.
Thank you,
Betty
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