| RT failed in my case |
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05/27/2014 01:06
callie 
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05/27/2014 01:06
callie
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RT failed in my case
I had RT in January of 2013. I can say that the results are not what one would like to expect. At first I thought the results were good but it was too soon to tell. The hand/nodules have got progressively worse since the RT. Contraction is developing and the area of the nodules is spreading and hardening in the palm.
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05/27/2014 02:50
MikeNinerSeven 
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05/27/2014 02:50
MikeNinerSeven
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Re: RT failed in my case
Hi callie,
So I am curious. How long did have DD before getting RT? And, where did you get RT, the US, Germany, UK, ????? Did you do the two full rounds?
I do hope it gets better for you. It is a tough disease.
..... MikeNinerSeven
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05/27/2014 06:51
GaryBall 
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05/27/2014 06:51
GaryBall
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Re: RT failed in my case
MikeNinerSeven:
Hi callie,
So I am curious. How long did have DD before getting RT? And, where did you get RT, the US, Germany, UK, ????? Did you do the two full rounds?
I do hope it gets better for you. It is a tough disease.
..... MikeNinerSeven
I sadly have to say that I m in the RT has failed box for LD. 30 gy treatment in Germany completed in April 2012. Initially good results but progression started 6 months after final treatment.
Despite this I would still suggest RT is a good option at the right time for many people. The data is quite convincing. I also have full confidence in prof S. and his approach to treating the disease. I am considering a 3 rd round of RT after completing some hyaluridase injections. Before moving forward with this option I m trying to get more info on the injections and a practitioner who is able to perform them...
All the best
Gazza
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05/27/2014 07:09
spanishbuddha  Administrator
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05/27/2014 07:09
spanishbuddha Administrator
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Re: RT failed in my case
Sorry to hear this callie and gazza
We do get the occasional reports on here of RT not helping. If only we knew the reasons why. I had RT in my right hand in November last year, and have unsettling signs the condition is progressing, but I thought this too with my left hand after RT and now it has stabilised, so it may still be to early for me to declare.
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05/27/2014 09:44
GaryBall
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05/27/2014 09:44
GaryBall
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Re: RT failed in my case
spanishbuddha:
Sorry to hear this callie and gazza
We do get the occasional reports on here of RT not helping. If only we knew the reasons why. I had RT in my right hand in November last year, and have unsettling signs the condition is progressing, but I thought this too with my left hand after RT and now it has stabilised, so it may still be to early for me to declare.
In my case Prof S. is suggesting "over active background" and maybe a 3 round could nail it as it is still active.. Makes sense to me but something bothers me that RT may have got the disease revved up.....I really want to leave a 3round in my pocket to use after injections if I have to go that way.....things have got pretty tight over the last couple of months!!!
Gazza
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05/27/2014 09:51
Vonmae 
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05/27/2014 09:51
Vonmae
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Re: RT failed in my case
RT has also failed for me. Completed two rounds last December with no signs of any improvement and in fact the DD has advanced. Straight after first RT on right hand I developed cord and nodule in left hand. From three fingers in right hand involved at start of treatment there is now cords to all fingers and have developed hard bony lumps inside knuckles of middle fingers and some contracture. I also developed frozen shoulder in my right shoulder after first RT treatment in September last year and am still experiencing a great deal of pain and still can not raise my arm outwards from my body. I also get a lot of pain in the palm of my right hand at site of nodules. I have found the suggestion from someone on this forum to cover handles of knives with tubular foam very helpful.
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05/27/2014 11:58
newman
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05/27/2014 11:58
newman
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Re: RT failed in my case
Hi where did you travel to ,to have the Rt. In Australia or overseas?
Edited 05/27/14 14:59
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05/27/2014 22:28
callie
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05/27/2014 22:28
callie
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Re: RT failed in my case
I had RT in U.S. (Portland, OR). 15 Gy and 10 weeks later a second 15 Gy.
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05/28/2014 08:09
Vonmae
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05/28/2014 08:09
Vonmae
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Re: RT failed in my case
I had the RT in Adelaide, Australia. Two 15gy treatments 10 weeks apart.
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06/05/2014 21:25
TrevB
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06/05/2014 21:25
TrevB
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Re: RT failed in my case
GaryBall:
MikeNinerSeven:
Hi callie,
So I am curious. How long did have DD before getting RT? And, where did you get RT, the US, Germany, UK, ????? Did you do the two full rounds?
I do hope it gets better for you. It is a tough disease.
..... MikeNinerSeven
I sadly have to say that I m in the RT has failed box for LD. 30 gy treatment in Germany completed in April 2012. Initially good results but progression started 6 months after final treatment.
Despite this I would still suggest RT is a good option at the right time for many people. The data is quite convincing. I also have full confidence in prof S. and his approach to treating the disease. I am considering a 3 rd round of RT after completing some hyaluridase injections. Before moving forward with this option I m trying to get more info on the injections and a practitioner who is able to perform them...
All the best
Gazza
I had RT in Jan & March 2009 at Poole and touchwood it did everything I hoped thus far, long may that continue. Whichever way people go with Dups is a personal decision but they should look at this as an option when they can IMO.
Cambidgeshire, UK.
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