Side-effects of radiation |
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06/01/2012 07:36
ffiscool
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06/01/2012 07:36
ffiscool
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Re: Side-effects of radiation
Thank you for sharing. I do think it makes such a difference to hear someone's experiences.
I am glad you have found someone who can help and who is obviously knowledgeable and caring
where do you live that you have gone to Germany? apologies if I have missed that somewhere else
So what happens next?
I am having issues with my feet too, but sometimes I think that can be normal plantar fasciitis rather than ledderhose. So as he found those nodules, do you now have those done too?
Frances
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06/01/2012 09:39
GaryBall
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06/01/2012 09:39
GaryBall
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Re: Side-effects of radiation
All the best to you Sharon,
I think it is so important that your practitioner is experienced with the disease. We have heard this many times on the forum. I travelled to hamburg for ledderhose and was then told by prof S. That I had dups as well....initially I was disappointed, but now see it in a positive light.
Knowing that you have the condition and the information now on the forum puts you in a great position to be on top of the disease. It seems to me that the worst outcomes are for those who seek treatment once the disease has established itself..
I am sure prof S. Showed you how to monitor the progression. Keep an eye on it and get some comfy shoes and or othotic insoles would be my advice.
Best wishes to you.
Gazza
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06/01/2012 10:33
ffiscool
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06/01/2012 10:33
ffiscool
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Re: Side-effects of radiation
my doc thinks mine is not DD yet... as the ultrasound didnt show scarring, which is what the fibres would present as.. so in the short term, having hand therapy to see if it improves. he is keeping an eye on it so that obv it doesnt start doing more and then becomes obvious as DD - if you get my drift. he did say in same ballpark as DD.. not sure if he just doesnt know more or what. I am willing to see if the therapy improves. App the woman I am seeing is a whizz with this sort of thing
he will do steroid if i get more pain in bits, without any contracture
i asked him his thoughts on Radiation and he said he wouldnt advise it, but obv then he isnt a DD specialist, so if it does develop or I feel that it is not improving with therapy, I will go down that route
so will see what happens - I am not convinced it isnt DD, but as you said Gary, if you are at the beginning and on top of things esp coming on here with the knowledge and shared experiences, it is a great bonus
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06/01/2012 21:35
switcombe
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06/01/2012 21:35
switcombe
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Re: Side-effects of radiation
ffiscool: where do you live that you have gone to Germany? apologies if I have missed that somewhere else
So what happens next?
I am having issues with my feet too, but sometimes I think that can be normal plantar fasciitis rather than ledderhose. So as he found those nodules, do you now have those done too?
Frances
Hi Frances, I live in Oregon State. I went to Germany for two reasons - the experience of Prof. S. and the cost of treatment in the US - $16,000 here in my local area. I'll be going back for my second course of rt in August or September. I won't have my feet treated unless they become troublesome.
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06/01/2012 21:41
switcombe
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06/01/2012 21:41
switcombe
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Re: Side-effects of radiation
GaryBall: I am sure prof S. Showed you how to monitor the progression. Keep an eye on it and get some comfy shoes and or othotic insoles would be my advice.
Actually, Prof. S. didn't give me any instructions for examining my hands and feet, maybe he'll do that when I return in three months. However, I'm pretty well tuned in to any changes, so I'm hoping I'll notice if there's any progression. I do have very comfy shoes - just failed to take them with me to Germany - my flip-flops have many miles on them now.
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06/04/2012 17:17
bstenman
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06/04/2012 17:17
bstenman
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Re: Side-effects of radiation
It has been 5 years as of last May since I had XRT in Essen. My only regret was in listening to my primary care physician at the time and delaying the XRT treatment by a year. The disease progressed rapidly during that year and as a result my left hand which is the one I write with has continued to be a problem while my right hand which was progressing rapidly below the surface but with only a nodule and no contracture has required no additional treatment and is "normal" for all intents 5 years later.
The amount of radiation is very small and it is focused on the tissue immediately below the skin. You are more at risk from sunbathing. I have had no skin dryness or any other problems with the skin on my hands these past 5 years.
I had a NA procedure done to release contractions with my hand 4 months prior to the XRT which I see as a way to limit the recurrence as much as possible. I had Xiaflex injections performed last year by the same hand surgeon who had done the NA procedure in 2007. If I had it to do all over my process would be the same.
In terms of skin problems these I experienced only with the Xiaflex treatment which resulted in severe swelling of the hand which in turn caused the skin to crack. My "recovery" from the NA was 48 hours, XRT was a couple days (sun sensitivity only), and from the Xiaflex was four weeks. With a fasciectomy the recovery time is anywhere from 3 months to a year for most patients and for as much as 6% of the patients there may be permanent nerve damage.
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06/04/2012 21:11
flojo
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06/04/2012 21:11
flojo
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Re: Side-effects of radiation
I had no side effects from RT - not even skin dryness.
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06/04/2012 22:27
switcombe
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06/04/2012 22:27
switcombe
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Re: Side-effects of radiation
So far, my skin doesn't seem to be significantly drier, but it does seem to be thinner and more fragile, like there's not as much subcutaneous fat. My palm appears to be more cupped. Maybe it's just my imagination, but it does cause me to be somewhat fearful of my second course of radiation.
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06/05/2012 01:15
Maddie
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06/05/2012 01:15
Maddie
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Re: Side-effects of radiation
I have some cupping in my right palm (though not in my left). But my understanding is that this is an effect of the Dups, not an effect of RT. Dups can cause cupping because of the way the cords are pulling on the palm, similiar to a contracture in the finger joints. At least that is what I was told by Prof. S. Also, a couple of fingers on my right hand have the beginnings of contractures (10 - 15 degrees) but no visible or palpable cords. It seems that this hand has some cords that are very deep that are causing the cupping and these beginning contractures.
My belief is that the RT on my right hand slowed this overall process. I recently started wearing a night splint on my right hand, and that is helping as well.
Maddie
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06/05/2012 05:53
mharrel
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06/05/2012 05:53
mharrel
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Re: Side-effects of radiation
Maddie-- I don't know where you are, but where did you get your night splint? I live in the US but am in France for a while and would like to try the splint.
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