| Summarising information on RT treatment of DD |
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08/04/2011 03:45
stephenp 
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08/04/2011 03:45
stephenp
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Summarising information on RT treatment of DD
There is a huge amount of very useful and valuable information on the treatment of DD on this forum. However it is hard to get an overall picture of outcomes. Given the limited publications, I though that it may be useful to try to obtain and summarise basic information on treatment outcomes from forum users. As a scientist, I always want to see data!
If there is interest I am willing to collect, summarise and share the summaries of RT treatment. My non-scientific intuition says that more people should be availing themselves of RT treatment and a wider overall picture may help
The information needed is:
Some identifier/user name - to allow updates
Country - most treatment seems to be in Germany but others are looking for treatment at home
Treatment - 2 sets of 5 treatments at 3 Gys/treatment seems to be most common
Date of first set of treatments
Date of second set of treatments
Contraction - yes or no
Outcome - worse, no affect, marginal improvement, substantial improvement - yes I know it is subjective and qualitative!
Date - to allow updates
Comments - anything else that may be useful
Side affects - pain, skin etc
Other treatments - many people seem to be trying multiple treatments at the same time
I will collect the information and provide a summary on this forum after every 10 updates.
So as a start here is my data
stephenp
Australia
2 sets of 5 treatments at 3 Gy/treatment
first 15 June 2011
second 1 Aug 2011
Contraction no
Outcome some marginal improvement
Comments - less tightness and no pain when stretching any more
Side affects - darker and drier skin in treated area, increased ache in treated hand at time of second set
Other treatment - none
If people are comfortable with this and think it is a good idea - add to the data set; if not don't
Cheers
Stephen
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08/04/2011 13:30
lori 
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08/04/2011 13:30
lori
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Re: Summarising information on RT treatment of DD
I think it is a good idea.
Lori
USA-NC
2 sets of 5 treatments at 3GY
1st treatment date: 7-6-09
2nd treatment date: 8-10-09
Contraction: slightly, had puckering and dimpling at base of middle finger with cord running from base of middle finger through the nodule almost to the wrist
Outcome: Great improvement after 2nd round of RT. pain disappeared, grasp improved, tightening began to disappear
6 months to 1 year after RT: Saw the biggest improvement in hand, nodule disappeared, cord regressed into palm and is almost gone, cord is softer, tightening, drawing down of middle finger, and pain all disappeared. Grasp improved almost to before DD.
2 years after RT: no new DD and am in remission, hand regained most of its strength, still have a little dry skin in treated area
Side effects: on 3rd day of 1st round of RT had pain in hand. After 2nd round of RT had red skin in treated area that lasted for a couple of months, still have dry skin in treated area during winter months or after excessive use\
No other treatments
Edited 08/04/11 16:32
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08/26/2011 03:22
stephenp
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08/26/2011 03:22
stephenp
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Re: Summarising information on RT treatment of DD
Any more interested people?
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08/28/2011 04:20
LubaM.
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08/28/2011 04:20
LubaM.
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Re: Summarising information on RT treatment of DD
I think it is a good idea.
LubaM.
USA-CA
2 sets of 5 treatments at 3GY...5 days per week/ 2 weeks in a row
1st treatment date: November 09
2nd treatment date: November 09
Contraction: NONE, had puckering and dimpling in middle of palm and large/hard bumpy areas on the palm along the base of middle, ring and small finger. Very small thin cord running from base of index finger to underside of PIP joint of that finger.
Outcome: Great improvement after 2nd round of RT. , grasp improved, tightening began to disappear, able to spread the finger more.
6 months to 1 year after RT: Saw the biggest improvement in hand, thin small cord running along index finger almost disappeared, tightening of hand disappeared. Grasp improved. Some of the bumpy hard areas along base of fingers are much softer, some are almost gone.
20 months after RT: Have maintained original improvement. However, there is new DD (two small bumps running along the web between index finger and thumb) but this new DD is definitely "outside" the radiated area. I consider myself in remission, hand regained most of its strength.
Side effects: NONE so far. There was minor dryness following treatment, but nothing major. Used Urea cream the first few weeks after RT. There is no signs of any side effects from RT.
No other treatments
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