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11/30/2011 21:10
Christl 
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11/30/2011 21:10
Christl
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Need advise
Hello forum,
Can somebody tell me when is the time to do RT on feet? I keep reading about early stages. What else should be the symptoms?
I have small nodules - discovered them in June -, left one has given birth to a second small nodules in the meantime. Both are somewhat hard. Right foot has one, softer nodule. They don't bother me, have some burning in arches, that's all.
I am doing RT on both hands right now and will see Prof. S next week. So far he did not want to do RT on my feet, at least not 3 month ago. What do I have to watch out for? I don't want to miss my chance to zap them, but I guess there is a right time to do that.
Thanks.
Christl
:hmm
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12/01/2011 01:40
LubaM. 
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12/01/2011 01:40
LubaM.
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Re: Need advise
Christl:
Hello forum,
Can somebody tell me when is the time to do RT on feet? I keep reading about early stages. What else should be the symptoms?
I have small nodules - discovered them in June -, left one has given birth to a second small nodules in the meantime. Both are somewhat hard. Right foot has one, softer nodule. They don't bother me, have some burning in arches, that's all.
I am doing RT on both hands right now and will see Prof. S next week. So far he did not want to do RT on my feet, at least not 3 month ago. What do I have to watch out for? I don't want to miss my chance to zap them, but I guess there is a right time to do that.
Thanks.
Christl
:hmm
In my opinion.... there is not a "right" time for anything with this crazy disease. From everything written on this Forum, Prof. S. is an expert in the field of RT. If he didn't want to do RT on your feet 3 months ago, he should be able to re-evaluate your situation now, and decide if its the right time.
When I did RT on my left hand back in November '09, I wanted to take advantage of doing my hand and foot together to minimize the expenses of travel and hotel, since the place of the RT was not close to my home. But, at the time even though I didn't have problems with walking, I was convinced that the two nodules on the foot were getting harder and bigger, there was constant itching and burning, and I wanted to catch it before walking became a problem.
Edited 12/01/11 03:41
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12/01/2011 02:34
annmaiden 
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12/01/2011 02:34
annmaiden
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Re: Question about RT
Why is it that when doing RT they do not do the whole hand instead of just the nodules? It seems that all the post state that when (after RT) new nodules appear they appear outside the RT areas. Why not do the whole hand to prevent any futher nodules???
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12/01/2011 03:42
flojo
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12/01/2011 03:42
flojo
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Re: Need advise
My understanding is that RT is effective only when Dups has active nodules and isn't effective on cords or non-active tissue. If the disease isn't active, there's nothing for the RT to work on. Even though the dosage is so small there is very little risk, you would be subjecting your hand to unnecessary radiation.
In my case, I did get RT on the whole palm because nodules had popped up in all quadrants of my hand. They were all over the palm. Fortunately they showed up so that it made sense to do the whole palm. Like Luba said, this is a crazy disease. A month or 2 earlier, it looked like the separated patch of nodules was all that was going on. That was in July '09. Now, 2 1/2 years later nodules are showing up in my finger but not the palm. To me, RT successfully stopped the progression. With that long period of time since RT, I think it is safe to say that it wasn't active in my finger. It's just decided to act up again. I personally think the RT nipped in the bud what was the active disease area at the time. I had the nodules and itchy, crawly feeling that drove me nuts. I did not have pain like some people suffer.
That is a good question though. Please ask the good Dr. S about it and let us know what he says.
Good luck!
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12/01/2011 03:47
wach  Administrator
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12/01/2011 03:47
wach Administrator
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Re: Need advise
To Christl:
I would ask Prof S what you should watch for. He ought to know, shouldn't he?
To Annmaiden:
RT does not work prophylactically. Irradiating healthy tissue won't prohibit later disease, at least according to current knowledge. The other reason is that you only have 1 shot.You can't irradiate the same area twice (or rather, you should not exceed 30 Gy in a specific area). If you irradiate the whole hand and develop Dupuytren's later on, RT won't be an option anymore.
Wolfgang
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12/04/2011 00:18
Cyclist
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12/04/2011 00:18
Cyclist
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Re: Need advise
Hi Christl
It does sound like your foot nodules might be progressing and Prof S will confirm this for you when you see him. He is very flexible with bookings and if he evaluates your feet are ready for treatment, he will be able to book you in while you are there for your hands. He will be in a really good position to do this because he can compare how your feet have changed since your first visit. I would suggest you prepare to take extra $$ in case.
When my nodules started progressing, they progressed rapidly. They were dormant for years as pea-sized hard lumps under the surface, but then a 2 cm diametre lump of soft tissue appeared on the surface of the skin, which then grew, hardened and then symptoms set in within 6 months of progression. Symptoms included burning along the plantar tendon, throbbing pain in the nodule and nerve pain in the ball of the foot and very VERY sore aching feet (all over) after walking for short durations, worst with lots of stopping and starting (e.g. shopping). The nerve pain in the ball of the foot is from stretching the plantar tendon so turned out to be avoided by keeping feet straight (not standing on or pulling back toes)
Once the progression stopped with RT, the symptoms all subsided.
I hope this helps and doesn't make you feel down - just wanted to share some potential symptoms - yours may turn out to be quite different. I have an aggressive form of ML (confirmed by Prof S). Others may jump in and provide a contrasting picture.
The important thing is that you are being pro-active and staying on top of it! 
All the best
Di
Christl:
Hello forum,
Can somebody tell me when is the time to do RT on feet? I keep reading about early stages. What else should be the symptoms?
I have small nodules - discovered them in June -, left one has given birth to a second small nodules in the meantime. Both are somewhat hard. Right foot has one, softer nodule. They don't bother me, have some burning in arches, that's all.
I am doing RT on both hands right now and will see Prof. S next week. So far he did not want to do RT on my feet, at least not 3 month ago. What do I have to watch out for? I don't want to miss my chance to zap them, but I guess there is a right time to do that.
Thanks.
Christl
:hmm
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12/28/2011 08:37
Christl
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12/28/2011 08:37
Christl
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Re: Need advise
Thank you all for responding.
LubaM, Prof. S. will not do RT unless he feels your hands or feet are ready. I think I am ready, I feel I want to do something and not wait, but it's all timing, he knows more than I do, so I wait and watch.
Di, your answer did not get me down. I appreciate your answer. When I first read about this disease I got scared. It is frustrating to know that there is no cure and once you've got it, it's there forever, lurking and waiting to strike.
Seems Prof. S did not think the time is ripe for RT on my feet yet. I do have this burning sensation all the time, my nodules seem to grow a bit,so I think, walking is not a problem, but as you said, sitting and walking again I can feel some strange dull pain, some stabbing sensation, sometimes all the way to my heel. There is something going on, I guess the key is timing. Prof. S suggested to keep a diary and just pay attention. I have a feeling I will be in Hamburg next year again. Funny, before I left for Germany early December my grandson wondered, if we don't have doctors here in the States? He is 7years old, good point.
Flojo you said you found somebody at Loma Linda Hospital. Let us know how it goes. Wonder what they charge as a cash patient.
Dr. Wach, congrats on the book and Thanks for keeping us sane and educating us on some options with this nasty disease.
Happy New Year to everybody. Hope 2012 will be a good year for all of us.
Christl
Edited 12/28/11 10:45
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12/28/2011 15:02
flojo
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12/28/2011 15:02
flojo
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Re: Need advise
Christi,
I will ask Dr. Katerelos the question about cost if paying cash along with the other questions on my list.
Good luck to you!
Flora
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12/28/2011 16:31
Christl
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12/28/2011 16:31
Christl
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Re: Need advise
Thanks Flora.
Good luck with your consultation.
Christl
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