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Progression after radiation -- need advice
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07/05/16 15:06
Moe 
07/05/16 15:06
Moe 
Progression after radiation -- need advice

It's been just over a year since I developed Ledderhose, and eight months since I completed RT on the one foot that had developed a small nodule. (I am 57 and had surgery on both hands for DD a few years ago.)

A couple of months after completing the RT, the disease became active in both feet (and still is). I thought the pain in the irradiated foot was from the RT but I now have a small new nodule on each foot in about the same location. Also, since RT, I can now feel the LD in my irradiated foot when walking, whereas before I could not. Luckily, it is just discomfort, not pain, when walking.

I will be starting RT on the other foot next week. My doctor does not yet know of the new nodule on the irradiated foot but does know of the tingling and pain, and said that was unusual so long after RT. An MRI was taken for this second foot to guide RT (new protocol), but was not done for the first foot.

Can anyone please give me advice? Should I ask my doctor to do MRI on my first foot and work with Prof S to do a third round of RT later this year, if warranted (a year after initial RT rounds)? What is the role of MRIs in determining RT treatment? How important is it to wait 8-12 weeks between the first two rounds? Mine were done five weeks apart. Does RT for LD or DD ever result in permanent pain or any kind of nerve damage? Thank you......

07/05/16 16:27
wach 

Administrator

07/05/16 16:27
wach 

Administrator

Re: Progression after radiation -- need advice

Hi Moe, I am very sorry to hear about your progressing Ledderhose! According to our Patient Survey last year RT seems to be the most efficient way for treating LD http://www.dupuytren-online.info/patient_survey.html .

Below I am trying to answer your questions but it's only my personal opinion, no guarantee!

Should I ask my doctor to do MRI on my first foot and work with Prof S to do a third round of RT later this year, if warranted (a year after initial RT rounds)?
A: I don't expect Prof. S to work with someone in the USA (or elsewhere), primarily for liability reasons. Besides that he is more than busy treating his own patients. Your doctor probably needs to decide himself whether he can irradiate additionally in the same area.

What is the role of MRIs in determining RT treatment?
A: quite limited. It helps defining the depth of irradiation. The circumference is usually well palpable and does not benefit from MRIs.

How important is it to wait 8-12 weeks between the first two rounds? Mine were done five weeks apart.
A: 8-12 weeks is the usual waiting period but that is not based on detailed studies, just common practice. The 21 Gy regime is applied without a break in between.

Does RT for LD or DD ever result in permanent pain or any kind of nerve damage?
A: I heard of skin reddening and maybe a little temporary inflammation but never of permanent pain or nerve damage. Maybe this has other reasons and is not due to RT?

Hope this helps a little.

Wolfgang

07/05/16 16:32
spanishbuddha 

Administrator

07/05/16 16:32
spanishbuddha 

Administrator

Re: Progression after radiation -- need advice

Hi Moe

Who or where was your RT treatment done? It does not sound like it was ProfS in Hamburg (5 week gap is not what he recommends) and it also sounds like it was done 'too early' or at least maybe when there were not currently active signs of progression or activity at the time of RT. Or maybe I'm reading your post incorrectly. Were you given a total of 30Gy and do you know the depth?

If you have ongoing new progressive symptoms then I think ProfS might consider one more half round of treatment (15GY) but he would want to do a personal examination and know the history. Your own radiologist would be the one to advise. There are occasions reported on here when RT has not helped either DD or LD, it's always difficult to say why.

07/05/16 18:00
Moe 
07/05/16 18:00
Moe 
Re: Progression after radiation -- need advice

Thank you, Wolfgang. Perhaps there is another foot ailment involved.

07/05/16 18:03
Moe 
07/05/16 18:03
Moe 
Re: Progression after radiation -- need advice

And thank you, Spanish Buddha. I'm pretty sure it was 30 GY but don't know the depth.

07/16/16 10:40
GaryBall 
07/16/16 10:40
GaryBall 
Re: Progression after radiation -- need advice

Moe:
It's been just over a year since I developed Ledderhose, and eight months since I completed RT on the one foot that had developed a small nodule. (I am 57 and had surgery on both hands for DD a few years ago.)

A couple of months after completing the RT, the disease became active in both feet (and still is). I thought the pain in the irradiated foot was from the RT but I now have a small new nodule on each foot in about the same location. Also, since RT, I can now feel the LD in my irradiated foot when walking, whereas before I could not. Luckily, it is just discomfort, not pain, when walking.

I will be starting RT on the other foot next week. My doctor does not yet know of the new nodule on the irradiated foot but does know of the tingling and pain, and said that was unusual so long after RT. An MRI was taken for this second foot to guide RT (new protocol), but was not done for the first foot.

Can anyone please give me advice? Should I ask my doctor to do MRI on my first foot and work with Prof S to do a third round of RT later this year, if warranted (a year after initial RT rounds)? What is the role of MRIs in determining RT treatment? How important is it to wait 8-12 weeks between the first two rounds? Mine were done five weeks apart. Does RT for LD or DD ever result in permanent pain or any kind of nerve damage? Thank you......
Moe

I had RT for Ledderhose 5 years ago....initially results were positive.....but within a year I had a significant flair up and developed additional nodules..... my stage n dupuytrens developed into stage 1.

I reluctantly decided to give another recomended treatment a go from a long term LD patient.....his advice.....do nothing!!!.....I would have to say it was good advice overall.....in addition to that look after your hands and feet.....no micro injuries and live healthy......

Wishing you the best

07/17/16 17:47
Moe 
07/17/16 17:47
Moe 
Re: Progression after radiation -- need advice

Gary, I'm so sorry your conditions worsened. I guess no treatment is foolproof. I will try to accept how things are and take better care of my feet -- inserts, massage, Voltaren. I'm sure playing tennis doesn't help, but won't give that up.

07/18/16 08:52
GaryBall 
07/18/16 08:52
GaryBall 
Re: Progression after radiation -- need advice

Moe:
Gary, I'm so sorry your conditions worsened. I guess no treatment is foolproof. I will try to accept how things are and take better care of my feet -- inserts, massage, Voltaren. I'm sure playing tennis doesn't help, but won't give that up.

No problems Moe,

I was off the court for a while......but I m playing again now.....I believe the worst pain comes when the nodules are developing.....in my case things seem to settle down after a few months....

I used to walk a lot and my feet got taxed.......I Ve since learned that I need to keep the mileage off them and wear only comfy shoes....... I ll also have 20 mins a day with them in ice...that keeps everything nice for tennis where I ll also play with a golf glove....just a case of learning what works and managing it.......I also feel that eating a anti inflammatory diet helps......and eliminating processed sugars....

Even though I have progression with my condition......I feel that I can do more than I could 6 years ago.....and that I have a reasonable amount of control with how I live....there are much worse things to get.....and this forum is such a great resource for us to try different things that have helped differ t people...

08/20/16 20:25
Moe 
08/20/16 20:25
Moe 
Re: Progression after radiation -- need advice

Gary, it is encouraging that you have found some strategies to take care of your feet and that you feel you can do more than six years ago. That is amazing. As for my feet, my GP said it could be tendinitis or scar tissue from the radiation. A different radiation oncologist on my hospital team agreed it could be scar tissue and that it can take a year or more to settle down. So it is possible that it is not progression of the disease, after all. Thanks again. ... Moe

08/31/16 14:53
Tdayres 
08/31/16 14:53
Tdayres 
Re: Progression after radiation -- need advice

No problems Moe,

I was off the court for a while......but I m playing again now.....I believe the worst pain comes when the nodules are developing.....in my case things seem to settle down after a few months....

I used to walk a lot and my feet got taxed.......I Ve since learned that I need to keep the mileage off them and wear only comfy shoes....... I ll also have 20 mins a day with them in ice...that keeps everything nice for tennis where I ll also play with a golf glove....just a case of learning what works and managing it.......I also feel that eating a anti inflammatory diet helps......and eliminating processed sugars....

Even though I have progression with my condition......I feel that I can do more than I could 6 years ago.....and that I have a reasonable amount of control with how I live....there are much worse things to get.....and this forum is such a great resource for us to try different things that have helped differ t people...

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