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REACTIVATION AFTER RT
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04/10/2010 18:39
cindy850 
04/10/2010 18:39
cindy850 
REACTIVATION AFTER RT

Was wondering how many of you got any kind of reactivation in your hands after doing RT? I had RT about a month ago and everything is going pretty good except i keep getting a shooting pain in the bottom part of the palm which is my right hand and my left hand i have this same type of pain in my thumb. Hoping it goes away. Very nervous because i don't want this stuff creeping back in my hands. I hate this disease. Anyway i go for my follow up with doctor on the 16th. I will keep everyone posted. Even thought i got his shooting pain going on if i needed to do something for my hands it would be RT in a flash -I'M THERE. Take care everybody

04/11/2010 00:13
flojo 
04/11/2010 00:13
flojo 
Re: REACTIVATION AFTER RT

No reactivation of DD in the radiated area for me. Just outside the radiated area, there appears to be some activity on the inside of my little finger just above the palm. I know I'm overly sensitive to anything that feels funny in my hand.

04/12/2010 16:35
LindaGail 
04/12/2010 16:35
LindaGail 
Re: REACTIVATION AFTER RT

Unrelated to the RT that I had, I also had shooting pain in my right palm near my thumb but closer to my wrist. After going to a orthopedist hand specialist, I was surprised to learn that the pain in my palm was due to arthritis in my thumb joint. I have no pain in my thumb joint and was totally unaware of the arthritis! Just a thought but you may have something else going on other than reactivation.

04/12/2010 16:59
cindy850 
04/12/2010 16:59
cindy850 
Re: REACTIVATION AFTER RT

Thanks Linda i hadn't even give it a thought. And i do have osteoarthritis and i can't believe i didn't even think about it because i just don't want this hand disease and i don't want it to reactivate either but i'm sure i'm not the only one that feels this way. Take care

06/17/2010 19:22
TomVirginia 
06/17/2010 19:22
TomVirginia 
Re: REACTIVATION AFTER RT

To date I have mixed results.
Left hand small finger was/is the most effected. A single large nodule at the base of the pinky with a heavy cord from lower mid-palm up to the second knuckle of the pinky. I was experiencing a fair bit of pain and cramping which is what led me first to this site and then to RT treatment. Both pain and cramps quickly disappeared after treatment but returned after 4 months and the finger has added another 15 degrees of contraction to the previous 30.
Right hand has 3 cords and 3 nodules. The two cords and nodes in the center of the palm seem to be inactive but I have had a nodule appear on the 2nd knuckle of my right pinky since October. This was outside the treatment area. There is also a thumb cord which was at the perimeter of the treatment area which I am watching closely.
My MD at MCV suggests re-treating the right hand if it progresses any further but doesn't advise additional treatments on the left hand.
Tom

06/17/2010 19:42
cindy850 
06/17/2010 19:42
cindy850 
Re: REACTIVATION AFTER RT

I'm always surprised of the amount of people that do not get their whole hand radiated and up in to the fingers. It's very confusing for me because this just grows all over your hand and when a doctor does not do whole hand it makes no sense. Do whole hand and be done with it. If everyone is unsure look at my post on radiation experience and read and look at my photos that show the drawings on hands where i got RT. For right now everything is going good for my hands - i guess. I still have a lot of tightness in hands and its worse at night but my nodules are so small now and i still have no contracture. My hands at times ache a lot and my gripping is so so but if this is what i'm left with i'm okay with it. I also have some mixed feelings about RT but i'm beginning to think its all me. I was kind of wanting my old hands back and i know now that will never happen. Guess i was dreaming.

06/18/2010 03:25
flojo 
06/18/2010 03:25
flojo 
Re: REACTIVATION AFTER RT

It's hard not to want to have the original functions of our hands back. My grip is much stronger, my hand is not as tight and the crawly feeling has gone. It continued to improve for about 3 months after RT. It is not perfect though, but I can't complain at all. The dang progression was stopped and that is what RT is all about.

I agree that having the whole palm including the Meta joint seems indicated. If it is active, more nodules may show up anytime, like tomorrow. Because of my personal schedule, I waited 3 months after NA to get RT. Looking back, that was fortunate because nodules just kept forming. By the time I went in, I must have had 10-12 nodules scattered throughout all quadrants of my palm. Dr. T saw that and mapped the whole palm to be radiated. It was a good call and I am glad he diagnosed it that way. While Dr. T is for as little radiation as possible, he is aware of how this disease works. If my whole palm had not been radiated, I think there may well be little areas with active Dupuys wherever radiation was not done.

This just is my take now almost a year after RT. It's hard to know because every hand is different. There is no way to know exactly what to do, but this Forum allows us to compare with others and try to figure out the best treatment for our individual condition. Thank you, Wolfgang, and all who share so that we can benefit from everybody's experiences and make a truly educated decision about treatment.

06/18/2010 21:42
LubaM. 
06/18/2010 21:42
LubaM. 
Re: REACTIVATION AFTER RT

flojo:
It's hard not to want to have the original functions of our hands back. My grip is much stronger, my hand is not as tight and the crawly feeling has gone. It continued to improve for about 3 months after RT. It is not perfect though, but I can't complain at all. The dang progression was stopped and that is what RT is all about.

I agree, we all want our hands back. But I have come to the conclusion it will never happen. My left hand where I have multiple nodules and no contracture use to itch and burn alot. All the nodules got smaller and softer. This makes me think RT stopped the progression and that is all I can ask for now. I keep looking at my hands on a daily basis and watch for sign of new disease. All I can do is be watchful, help answer other people's questions by sharing my experience and hope for a cure in my lifetime.

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