| Radiation on both hands at the same time? |
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09/21/2009 13:01
lori 
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09/21/2009 13:01
lori
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Re: Radiation on both hands at the same time?
Hi all,
My GP did not know what I had in my hand. She referred me to a hand specialist (surgeon) who took one look and instantly knew. He did not even touch my hand.
I had a steroid shot that stopped the growth for a short time so that I could make an intelligent decision without feeling like I was in a race against my hand. I could feel the tightness and see dimpling coming on fast so I felt like contracture was just around the corner.
I too can have RT again if needed because of the low dosage used. My nodule and cord has dramaticall been reduced, scroll back through the headings until you see "pictures of my hand from MRI to now" to get an idea of how it worked for me.
Lori
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09/21/2009 13:48
aioanne 
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09/21/2009 13:48
aioanne
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Re: Radiation on both hands at the same time?
Thank you everyone.
Wolfgang, I have been reading on the forum that RT is most effective when the disease is active.
1/ How do you know when it is active? when they grow? when you see more nodules?
2/ I do not think the nodules on my feet are growing at the present so they may be in the dormant stage- does that mean doing RT now would be of no use and that I should wait to see some growth or new nodules before doing RT?
On the other hand, you are suppose to do RT in the early stages, but it may be months or years before the disease becomes active. In which case the months or years would take the disease away from the early stage.
So many variables to consider
Thank you
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09/21/2009 16:36
LubaM
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09/21/2009 16:36
LubaM
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Re: Radiation on both hands at the same time?
Responses:
____________________________________________________________________________________________
1/ How do you know when it is active? when they grow? when you see more nodules?
2/ I do not think the nodules on my feet are growing at the present so they may be in the dormant stage- does that mean doing RT now would be of no use and that I should wait to see some growth or new nodules before
doing RT?
______________________________________________________________________________________________
Re: 1) I find that my hand is itching sometimes and I do see more nodules developing...I have not kept track of dates, but I keep looking at my left hand and I see more nodules and some are getting bigger and harder... According to Dr. T. at Scripps that is the best time to consider RT and he agreed that itching is one of the indications of activity and growth.
re: 2) Same as you, the nodules in my left foot have been dormant for many years...Dr. T. suggested to leave it alone, but when I see him on Oct. 26th to do mapping/planning session for my left hand RT I will ask him again if he can radiate left foot anyway, even though its dormant and has not progressed....I will post on this forum after Oct. 26.
LubaM
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09/21/2009 18:12
wach  Administrator
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09/21/2009 18:12
wach Administrator
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Re: Radiation on both hands at the same time?
See below ***
Quote:
Thank you everyone.
Wolfgang, I have been reading on the forum that RT is most effective when the disease is active.
1/ How do you know when it is active? when they grow? when you see more nodules?
*** it might be better to say "if the individual nodule" is growing. You wouldn't radiate a nodule just because you are getting another nodule elsewhere.
2/ I do not think the nodules on my feet are growing at the present so they may be in the dormant stage- does that mean doing RT now would be of no use and that I should wait to see some growth or new nodules before doing RT?
*** most doctors in Germany would refuse radiating a stable=dormant nodule because this would likely not bring any improvement.
On the other hand, you are suppose to do RT in the early stages, but it may be months or years before the disease becomes active. In which case the months or years would take the disease away from the early stage.
*** you are right, "early" might be misleading. Probably the best description for the ideal target would be a "small, growing nodule".
So many variables to consider
Thank you
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09/22/2009 23:25
bstenman
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09/22/2009 23:25
bstenman
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Re: Radiation on both hands at the same time?
Important to understand that in the USA doctors give "advice" that is limited by their concerns about being sued. The further the go from "accepted norms" the greater the risk so they will advise traditional procedures like a fasciectomy even with its significant risks but are wary of promoting X-ray treatment for Dupuytren's as it is still considered somewhat experimental. Every private oncologist I spoke with while trying to get XRT in the USA refused and said it was over concerns of malpractice and their insurance. I finally got a former research associate of Dr. Seegenschmiedt to provide the treatment and this was in a teaching hospital where they are more inclined to try new treatments.
I think this goes toward explaining why when a person has Dupuytren's most evident in one hand they will recommend only treating the one hand even though this is not logical. If a person has Dupuytren's evident in one hand then it is likely just a matter of time before it appears in the second hand as well. If the XRT is more effective at the earliest stages of Dupuytren's it makes sense to get the treatment as soon as possible. The extra cost of having the second hand exposed in addition to the first is almost zero.
When I had my NA performed by Dr. Denkler in 2007 I told him that I also planned to go to Essen for XRT and he said it seemed like a reasonable course of action. It was not something he was recommending at the time. By the time one goes for a NA procedure the disease is already significantly advanced. If anything long before a NA is needed it would be wise to get the XRT. By the time a NA procedure is required it may very well be too late for the XRT to be effective.
Cost wise, my treatment in Germany with 2 weeks of travel during and after XRT was less than my out of pocket expense for the second treatment series in California with my Blue Cross coverage.
Bruce
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09/25/2009 13:35
flojo
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09/25/2009 13:35
flojo
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Re: Radiation on both hands at the same time?
As with NA, I think there are doctors in the USA who are stepping out on the cutting edge to do RT.
The groups of doctors listed on in the left column are to be commended for putting their patients first whatever procedures they are doing.
If I had known about RT early, I would have gotten it first. By the time I found this site and the options, I had contracture on my right hand. It was necessary to do NA first to be able to lay my hand as flat as possible for RT. What I can say after RT almost 3 months ago is that it worked! Even in the last month, I notice further improvement.
It is my understanding from reading others' experiences is that Dups does stop and start back up again, maybe years later. As for having it on both hands when one doesn't seem active, I choose to limit electron, x-ray or whatever radiation as much as possible. If my left hand starts to show progression of Dups, I won't wait until contracture starts because I now have knowledge about RT. I will wait until it is active but hope that it never becomes active.
My understanding also is that RT does not work on scar tissue, hence the reason for early RT. The cords have developed into scar tissue, so it doesn't work on cords but it works on nodules. It certainly worked on my nodules and I believe will prevent cords from developing.
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