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RT update after 4 months
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08/29/2013 13:52
ell 
08/29/2013 13:52
ell 
RT update after 4 months

Hi everyone - I wanted to share my experience and hopefully gain some insight from others. I have involvement in 1 hand (so far), 3 nodules in one hand, no contracture. Had the standard 3gy x 5, 2 courses, 6 weeks apart, ending mid-April. No side effects other than mild dryness, which seems to be permanent, but not a problem. One nodules is all but gone and the other 2 are flatter and softer. The associated pain is also gone although I do have mild discomfort now & then.

I've had intermittent stiffness (also have mild CTS in that wrist, so my hand hasn't felt normal in years) but I'm not really hampered. I avoid doing anything that involves my palms to be traumatized - certain yard work, etc., and have padded fingerless gloves I wear for things like scooping the cat's litter box and using a chef's knife.

Recently I noticed increased stiffness and a thick swelling, obviously a cord, (below middle & 4th fingers) from one of the nodules, although the nodules have not changed. Still no contracture, but these 2 finger do not bend backwards as far as on my unaffected hand. Honestly, they may have not been able to bend back as far for months - I never compared the hands on this until recently.

I emailed my radiologist, Dr. Crimaldi, from Southeast Radiology Oncology in Charlotte, NC (thank you again, Lori) who amazingly called me not 10 minutes after that email was sent. The personal attention one gets from this doctor is quite remarkable. I can be retreated with RT but to he says to watch it for several weeks and call him then. According to him, the cord may have always been there, only not palpable. RT continues to work for a year or more and sometimes 'angers' the cords and causes them to swell. He also said to take advil for the swelling. I'd sure like to believe that this cord is just swollen from the RT, but I'm not terribly optimistic.

Because I live 2 hrs from the clinic, I made an appt with my local hand specialist to get an professional opinion on the progression. I'm sure most of you here can relate to staring and manipulating your hand until you're convinced you've got it everywhere. The randomness of this disease makes is so frustrating.

Contrary to what I've read on this forum, Crimaldi says RT can shrink and stop progression of cords because they are the same substance as the nodules. Any opinions of that?

Also, I'm curious as to if anyone has had xiaflex when there was a cord but before there was contracture? I feel like the fact that my fingers don't bend all the way back is indication that contracture is in my future. I'd do the radiation again in a heartbeat, in spite of the 2 hr drive each way, and am hoping a more invasive procedure can be delayed. However, I don't plan to wait until I have a full contraction to try other things.

Thanks for reading & best of luck to all.

08/29/2013 14:20
callie 
08/29/2013 14:20
callie 
Re: RT update after 4 months

ell,

I noticed the same little growth in the cord following RT. It seems to have stopped, but only time will tell. Also, I had two nodules/dermal pits that were close to the active nodule. These dermal pits have been dormant for about 15 years. They showed signs of activity (swelling) following RT. They seem to have stabilized, but again I'll wait to see.

08/29/2013 14:27
lori 
08/29/2013 14:27
lori 
Re: RT update after 4 months

Ell,

Good to hear from you. I know Rt stopped my cord from growing and it softened the cord. My cord after Rt also recessed into my palm. You can barely see it. I know others did not have this occur and I feel lucky that it did.

Lori

08/29/2013 23:46
moondanc 
08/29/2013 23:46
moondanc 
Re: RT update after 4 months

ell:

Contrary to what I've read on this forum, Crimaldi says RT can shrink and stop progression of cords because they are the same substance as the nodules. Any opinions of that?

Also, I'm curious as to if anyone has had xiaflex when there was a cord but before there was contracture? I feel like the fact that my fingers don't bend all the way back is indication that contracture is in my future. I'd do the radiation again in a heartbeat, in spite of the 2 hr drive each way, and am hoping a more invasive procedure can be delayed. However, I don't plan to wait until I have a full contraction to try other things.

Thanks for reading & best of luck to all.

I think it's fascinating that Crimaldi says RT can shrink and stop progression of cords. I do know that Dr. Eaton-- who helped me decide how much of my hand to submit to RT--had me do nearly the entire hand up to space between MCP and DIP joints. I did not do the thumb area. Each time I try to figure out what's going on now in my thumb web I come away with a different feeling-- sometimes just a cord, sometimes I think nodules. It shall be interesting to see what Dr. Pess says when I consult with him in 2 weeks.

With regard to Xiaflex (don't do it!), I was in the FDA trials in 2007 and you couldn't get in unless you had contracture--I think it was at least 20% or more but I just can't remember. I'm sure it's available in the journal articles. I recently had a discussion here about why one has to wait until contracture and couldn't instead have NA on the cords. It was pointed out to me that without contracture (duh) it would be very, very difficult to "break" the cords. I suppose with enough Xiaflex you could "dissolve" the cords but I'd certainly be afraid of what else would dissolve. I do know that during the trials they did have cords spontaneously break before the appointment the following day to officially break them. I suppose it depends on the size of the cords. I guess now they're waiting more than 24 hrs to manipulate the hand after Xiaflex injection-- more time for the nasty substance to be in your body!

Diane

08/30/2013 03:09
stephenp 
08/30/2013 03:09
stephenp 
Re: RT update after 4 months

RT on my left hand has minimal but some effect on a well developed cord. RT on my right hand which was given earlier in the progression resulted in a newer cord regressing.

08/30/2013 05:46
wach 

Administrator

08/30/2013 05:46
wach 

Administrator

RT on cords? / Xiaflex without contracture?

Upfront comment: We don't know what causes Dupuytren's and how it looks like in its very initial stage. When you have a palpable nodule it obviously has developed already for a while. Because we don't know much about the disease development we are not sure either how radiotherapy works. It's all a little speculative. Also the RT treatment regimes are empirical. Research means trying out and seeing what helps.

The 8-12 weeks are empirical and seem to help the skin to recover. If you do less than 30 Gy you can try to do it in one go an that's why the 21 Gy are typically appplied within 1.5 weeks. And it works. Not totally as well but nearly as well as 30 Gy. But 15 Gy might not be enough or rather, the optimum dose will depend on the size and status of the treated nodule. For some people 15 Gy might already suffice.

Cords in their core are made of similar or the same material as nodules, so Dr. Crimaldi is right, RT can shrink and stop progression of cords. But it is not very likely. If you look at the figure in the section "Radiotherapy - when to apply best" on http://www.dupuytren-online.info/radiation_therapy.html then you see that on an average the odds become worse after the first year after detection of nodules. If you waited 4 years RT might already be useless although occasionally it might still be effective. At that time nodules typically have started to grow into cords. If Dupuytren's is very aggressive, RT might still help. A forum member, newman, had RT after 15 or so surgeries and it helped him stabilize his situation. Empirically the best advice is, if you want to have RT do not wait too long. If it works on cords you were lucky and there is nothing wrong with being lucky, right?

Xiaflex ought to be injected in way that it is contained within the cord. If it leaks out of the cord it might damage joints and tendons. Having some contracture will make it easier to break the cord after injection. Xiaflex is considered an alternative to surgery and that's how it is marketed; it is targeted to become the new gold standard. Surgery, because of its side effects, is usually not recommended before you have 20 deg contracture and I would think that's why they used the 20 deg threshold also in the initial Xiaflex trials.

Wolfgang

moondanc:
I think it's fascinating that Crimaldi says RT can shrink and stop progression of cords. ... With regard to Xiaflex ... It was pointed out to me that without contracture (duh) it would be very, very difficult to "break" the cords. I suppose with enough Xiaflex you could "dissolve" the cords but I'd certainly be afraid of what else would dissolve. I do know that during the trials they did have cords spontaneously break before the appointment the following day to officially break them. I suppose it depends on the size of the cords. I guess now they're waiting more than 24 hrs to manipulate the hand after Xiaflex injection-- more time for the nasty substance to be in your body!

Diane


Edited 08/30/13 08:47

08/30/2013 16:12
switcombe 
08/30/2013 16:12
switcombe 
Re: RT update after 4 months

Ell, I had cords in my palm that continued to progress after RT. However, in a few months they settled down and have stopped progressing. It's been one year since my RT and I have no contraction, nodules have softened, and I no longer have problems with dry skin. However, I have a bad case of tendinitis or tendinosis in my forearms near my wrists which greatly limits any vigorous hand activity.

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