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Pros and cons of radiotherapy
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01/09/2013 15:17
aryan 
01/09/2013 15:17
aryan 
Pros and cons of radiotherapy

Hi All

I'm just back from seeing Dr Shaffer at Guildford for a follow up appointment 4 months after the finish of RT treatment on my hands. He had to agree that it has not been a great success in my case. Although some nodules have flattened and softened, two more appeared during treatment and two have popped up since (despite all the new nodules being within the treated area).

For me the side effects have made me quite depressed and I do regret having gone ahead with the treatment. Apart from the dryness, my hands feel aching and stiff - the RT seems to have thickened the tissue on the palms of my hands so that bending them especially first thing in the morning is quite painful. The muscles at the sides of my hands are also very sensitive. Dr Shaffer says that all this may subside in time but also thinks physiotherapy might be a good idea.

My reason for having RT was to prevent any contraction of the fingers. Dr Shaffer said there was a 60% chance of this. So far contraction hasn't occurred and of course maybe never will. I'm a potter and work mostly on the wheel so contraction of the fingers would be a disaster. However, ironically I haven't done any potting since my RT treatment because I'm afraid of making my hands ache more and feel even drier! BUT I bought a new batch of clay yesterday and am determined to have a go!

All this is just my experience and I know from reading other people's experience with RT that it is often very successful for early stage DD and probably the best option if there is no contraction of the fingers. I certainly wouldn't want to put anyone off going for RT - I'm just one of the few for whom it has not been worthwhile and I think it is best not to see the treatment as a 'magic cure' for all.

All the best,
Aryan

01/09/2013 18:35
dottyhand 
01/09/2013 18:35
dottyhand 
Re: Pros and cons of radiotherapy

I am sorry to hear this. I am booked in for the 28 th with Dr Shaffer.. I won't be getting my hopes up

01/09/2013 19:06
spanishbuddha 

Administrator

01/09/2013 19:06
spanishbuddha 

Administrator

Re: Pros and cons of radiotherapy

Just to add to the balance and in line with this, I too had RT two years ago, and have to say the juries still out.

No reduction in existing nodules, but a new slow growing nodule and skin changes that suggest more will develop. I also have strange aches, stiffness and soreness that I did not have before.

The good thing is my hand has not developed contracture, but of course it may not have done anyway. I remain optimistic though, whilst planning another stage of treatment if needed - NA.

01/09/2013 20:20
aryan 
01/09/2013 20:20
aryan 
Re: Pros and cons of radiotherapy

Good luck Dottyhand. I hope your treatment is successful and I think Dr Shaffer knows his stuff. Do report back.

01/10/2013 00:41
flojo 
01/10/2013 00:41
flojo 
Re: Pros and cons of radiotherapy

I highly suggest getting a custom hand splint to push back against the contracture. Cords will not be affected by RT and may still continue to tighten. That's what happened with my RT, but I have no new nodules in the radiated area, strength in my hand grip increased, and crawly, achy feelings went away and never came back. I have had NA to release the cords, and wear a night hand splint.

01/12/2013 08:56
Lanod 
01/12/2013 08:56
Lanod 
Re: Pros and cons of radiotherapy

aryan:
Hi All

I'm just back from seeing Dr Shaffer at Guildford for a follow up appointment 4 months after the finish of RT treatment on my hands. He had to agree that it has not been a great success in my case. Although some nodules have flattened and softened, two more appeared during treatment and two have popped up since (despite all the new nodules being within the treated area).


Aryan,
I'm sorry to hear that your RT treatment has not been very successful to date. Published reports to date suggest that just a small percentage of patients will develop new nodules within the RT treated area.

Would you be good enough to remind us of your condition pior to RT e.g.: when were you diagnosed with DD, how did the DD develop, was the DD active at the time of RT treatment etc.

Many thanks in advance.

01/12/2013 13:45
Lanod 
01/12/2013 13:45
Lanod 
Re: Pros and cons of radiotherapy

aryan:
Apart from the dryness, my hands feel aching and stiff - the RT seems to have thickened the tissue on the palms of my hands so that bending them especially first thing in the morning is quite painful. The muscles at the sides of my hands are also very sensitive.


Hello again Aryan,

You say you have thickened the tissue on the palms. I wonder if the condition which you describe could be radiation fibrosis. This is an uncommon side-effect of RT treatment for DD. As an effect of the radiation the soft tissue can become fibrous which is effectively scarring of the skin within the irradiated area. If this is so - could it be that the RT treatment has effectively been succesful on the DD but a new problem of fibrosis has been induced by the treatment. If so you could seek treatment for the fibrosis condition. In any case - if this suggestion is true - then I guess Dr. Shaffer would have immediately recognised this condition. Was this possibility mentioned to you by Dr. Shaffer?

01/13/2013 07:25
wach 

Administrator

01/13/2013 07:25
wach 

Administrator

Re: Pros and cons of radiotherapy

Wouldn't that be a long-term process rather than a quick reaction? The thickened tissue of the palm might have other reasons that might be related to the RT but through a different process. Of course, it might also be a coincidence.

Wolfgang

Lanod:
Hello again Aryan,

You say you have thickened the tissue on the palms. I wonder if the condition which you describe could be radiation fibrosis. This is an uncommon side-effect of RT treatment for DD. As an effect of the radiation the soft tissue can become fibrous which is effectively scarring of the skin within the irradiated area. If this is so - could it be that the RT treatment has effectively been succesful on the DD but a new problem of fibrosis has been induced by the treatment. If so you could seek treatment for the fibrosis condition. In any case - if this suggestion is true - then I guess Dr. Shaffer would have immediately recognised this condition. Was this possibility mentioned to you by Dr. Shaffer?

01/14/2013 20:23
bstenman 
01/14/2013 20:23
bstenman 
Re: Pros and cons of radiotherapy

I received by XRT and treatment plan from Dr. Siegenschmiedt and experience no side effects other than an increased sunlight sensitivity for the first couple of weeks after the treatments.

My only wish was that my family doctor had known about Dupuytren's and diagnosed it properly. During the delay in getting the XRT the Dupuytren's advanced a great deal more in both hands. The XRT was 100% effective in the hand that had progressed the least at that time and was far less effective with the hand that was at a more advanced stage.

The side effects mentioned are relatively trivial as compared to having 35 or more degrees of contracture with ones hands or problems with severe muscle cramping. There is the illusion that doctors can cure disease and make it all better and that is only true some of the time for some of the people for some of their ailments.

I would not expect a reversal of any of the symptoms of Dupuytren's with XRT, only a slowing of the progression of the disease.

01/15/2013 18:34
aryan 
01/15/2013 18:34
aryan 
Re: Pros and cons of radiotherapy

Hi Everyone

Thanks for all your interest. Just to recap. I first noticed lumps in the palms of my hands in April/May last year, with no contracture. I had been taking high dose glucosamine and chondroitin tablets for arthritis in my foot which I feel may well have triggered the DD.. I had my RT treatment in July and September ie 4 months ago. The new lumps in my right hand are growing quite rapidly now. I did suggest to Dr Shaffer that maybe I had RT too early and the nodules that have appeared after treatment were too deep seated to be reached by the RT. However he said that the RT was set to a depth to reach to the bone and so should have been effective on any nodules in the treated area but not palpable by hand.

RT fibrosis is an interesting theory and not one suggested by Dr Shaffer. I just hope the stiffness doesn't get worse. It becomes less of a problem as the day wears on and I keep hoping I'll wake up in the morning and it will all be gone! But no such luck! I suppose my fear is of developing arthritis.

For me the treatment has been worse than the disease so far although if I get contracture I suppose I'll think a bit differently!

Aryan

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