I had RT over Sept and Nov 2017 here in the UK. I suppose the hope was that this would work. Alas it appears not. Not only do I believe the cords are thickening but I am developing additional lumps in at least two locations. The Middle finger jest before the finger in the palm is about 5-7mm and ring finger left hand (I believe). The real surprise is the speed at which these have come on. Not entirely confident that the RT has been effective. When raised with the provider in the UK the response was that I may have an aggressive form. Not very helpful when I had paid £5k for the privilege. Fingers aren't contracting but the lumps are there as well as the pain. I have at lease 5 lumps in the left hand and 3 maybe 4 in the right. Not a lot I can do from hereon.
Sorry to hear this David. I had new nodules develop after RT, but they stabilised. Also I remained unconvinced that RT had worked for me for nearly 18 months after. Now it seems all settled despite minor changes and occasional aches and stiffness. It’s possible you are in the approx 15% for who it doesn’t help. Did your radiologist do a check on previous symptoms, activity, etc before deciding to go ahead? I wonder how old you are too? If I was in your position, and it did seem to continue to progress, then despite the lack of evidence in a control, I would have at least one meeting with Stephen Jeffrey, to look into massage, who I think is now a trustee of the BDS.
Do I gather correctly that both hands were treated and that the new lumps are within the treated areas? I my case I had small nodules go away in the right hand and growth hopefully stopped in the left (no significant reduction there). Had my left hand been first, I may not have done the right hand and missed out on the definitely effective RT there.
Stef
[56, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]
spanishbuddha:Sorry to hear this David. I had new nodules develop after RT, but they stabilised. Also I remained unconvinced that RT had worked for me for nearly 18 months after. Now it seems all settled despite minor changes and occasional aches and stiffness. It’s possible you are in the approx 15% for who it doesn’t help. Did your radiologist do a check on previous symptoms, activity, etc before deciding to go ahead? I wonder how old you are too? If I was in your position, and it did seem to continue to progress, then despite the lack of evidence in a control, I would have at least one meeting with Stephen Jeffrey, to look into massage, who I think is now a trustee of the BDS.
Hi, I'm 62 years of age, both hands were treated and the affected areas are in the area that was RT. The initial examination was completed by the Dupuytrens Practice and RT completed under their guidance. I have been seeing Stephen on a regular basis with the next visit planned in 2 weeks and I am looking at pulling this forward. The two bumps I have are in addition to the first one that developed within 2 months of RT. So all in all I have at lease 3 post RT. Not good.
Yes, both hands were treated and yes all lumps are in the treatment zone, At the moment, I cannot say it's effective. The problem is I can't have RT for another 12 months and even then it's likely to be another £5k.
Stefan_K.:Do I gather correctly that both hands were treated and that the new lumps are within the treated areas? I my case I had small nodules go away in the right hand and growth hopefully stopped in the left (no significant reduction there). Had my left hand been first, I may not have done the right hand and missed out on the definitely effective RT there.
Stef
[56, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]
That's unfortunate. I am a bit confused about the 12-month period. The most common RT protocol for Dupuytren is 2 series of 15 gray each per treated area with 2 to 3 months between the series. I had concluded from the September and November 2017 dates you stated that you had received both series, on both hands. Most radiologist would then be reluctant to add another series. Have you had two series for a total of 30 gy on each hand, or are who still in the middle of your treatment?
Stef
[56, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]
David- our stories are quite similar. I also complete RT last September 2017 and I am also watching and still waiting. I did see some positive changes between sessions when 3 nodules shrunk and have pretty much stayed that way. But then like yourself, I developed the king of all nodules at the base of my middle finger that would only get one treatment. So it was treated along with the regular mess during the second session and off I went hoping all would settle down. (diagnosed May 2017) All was tolerable (no real change) until Feb. 2018 and that middle finger along with all the others started become sort of pickled looking with cords all over the place. The opposite hand sprouted 3 lovely new nodules (and cords!!) as well. I went back to the Dr. in March and she treated two fingers that had not previously been treated and noticed that I also had lovely cords heading towards my thumbs. They are in "wait and see" mode because they involve previously treated skin. Oh..and my arches were treated as well. So buckets of progression both in and out of field and it being 8 month post RT not looking very promising at all. What I'm hanging on to is the fact that I've read more than once that some folks are seeing stabilization as late as 18 months so I'm not tossing my hat in until I've reached that point. So hang in there-the one thing that we both have going for us is that we are both 62! Our "advanced age" might just be our trump card! Typing is killing me. Good luck!
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