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R/T Discussion About Protocols
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08/28/2013 02:46
Lowell 
08/28/2013 02:46
Lowell 
R/T Discussion About Protocols

Hi: I am about to get R/T treatment (electron beam machine) in about a couple of weeks,.......I found a Dr Wolfson at the University of Miami who had attented Dr Seegenschmiedt lecture here in 2010 and has a hieghten interest in the disease as a result. But, I am going to be his first real patient for him (and he likes that, as it appears--having a real live patient finally to work on).

Should I be scared because of lack of experience, though he seems quite good in general, or should I be real happy he is going to take a real interest in making sure everything goes alright because I am the first, as it were.

He spent a lot of time with me, and went over Dr. Seegenschiedt protocols that he said he will be following: (but isn't his protocols from many years ago (or are there recent ones?)....Dont know.

My Doctor also wants to do an MRI of my hands and a CT scan to map the plan for treatment of my hands (seems kind of thourgh I guess)...... wants to make sure also there is no finger involvement----he said that would be tricker to do with radiation, as opposed to just dealing with the palms.

Anybody have any thoughts about all this?


I am apparently going to get 3grays per treatment for 5 days, then wait I guess 8 weeks, and then another 5 days......TOTAL of 30grays. Is this a good approach, anybody know?

He is also downplaying any side effects to be minimal, if any. He also said that according to previous treatments from others in other places (I guess, namely Germany), that there is about an 80% chance that I will see good results from the treatment. Does this sound right?

Anyway, open for any kind of input that anyone can give me about all this.

thanks

08/28/2013 03:07
callie 
08/28/2013 03:07
callie 
Re: R/T Discussion About Protocols

Sounds fine. What is your age? What is the situation of your hand right now? Are the nodules active at this time? I think timing of the RT is as important as the procedure itself. If the timing is incorrect there will be little benefit from RT. My doctor irradiated my entire palm and up to the middle joint (PIP) in my fingers. There are differences of opinion about that.

08/28/2013 19:40
lori 
08/28/2013 19:40
lori 
Re: R/T Discussion About Protocols

I had the exact same protocol, including the MRI. It has been 4 years now and no new DD.

Lori

08/29/2013 03:09
Lowell 
08/29/2013 03:09
Lowell 
Re: R/T Discussion About Protocols

I'm 62, For 4 years aprox, I have had nodules in the palms of my hands… They have been pretty stable and have not much affected my hands in normal use for about 2 years, the 3rd year though, the nodules have caused me some problems, and had to be careful how I moved and used my hands, but still pretty manageable.

This past year, the nodules have became more pronounced and has affected much more the way I use my hands. I have to be careful of pressure and twisting movements and the like.

The last two months, some nodules have become bigger/harder in my right hand (especially one of them). I feel a very uncomfortable stretch in my ring finger at the base as well when I open up my hand. It hurts when I fully I open my hand, but sometimes less. The nodule at the base of my ring finger also feels inflamed, it hurts, and is sore most of the time. When my hand is at rest, I just feel a tightness in my palms for the most part. It hurts to both hands to a degree when turning the steering wheel of my car. I can lay flat both hands on a table, but my right hand kind of hurts a bit when I do..... I have no finger contractures.

Something new has well, not sure if it is related, but the base of both my thumbs and the area at the base between my thumb and forefinger hurt if I twist them or move them a certain way. Also my fingers have developed a bit of an ache to them when I move them (but not always).....I don't know what to make of that.

In general, I guess I may have the start of some cords in both hands but not sure how to know for sure.

My left hand has progressed slower in that it has been harder to stretch it open in the past year than previous years without it feeling weird, uncomfortable----but in general I can do so with no real pain per se (just a tight stretching feeling for the whole hand when fully outstreched. There are some nodules there as well, but don’t seem to interfere that much with normal action of the hand, though I still have to be careful of pressure and twisting actions, etc in this hand as well, or the action and/or pressure will hurt.

As far as if I am in an active stage......I don't know what the criteria is for that......I do know that within the last 2 months both hands have gotten a bit worse and the one nodule below my ring finger in my palm of my right hand (the one I refer to as being at the base)......definetly has become sore and harder, along with a very uncomfortable feeling of a rubber band type stretch going up my finger to below the first knucle somewhwere. I definelty do not like this feeling which goes up my finger.


The doctor said, he does not think there is any finger involement yet, he hopes there is not because the radiation he says will not be as affective there as oppossed to the palm........ I guess the MRI will help him see whats what.

MY big question is......will the radiation help, hurt, or do nothing? any insights? and what are the chances of cancer down the road......any stats on that?

Also: I think the indication is that he is going to radiate basically most of my palm, so I don't understand this mapping neccessity. I'm wondering if he should do my thumbs and fingers too....(but that is just me worrying about the whole thing at this point)........Its all very distressing!



I have another question amongst many more......does ultrasound help with reducing and/or breaking up the facia, and relieve soreness of a module?

I'm think of buying a clinical machine that has a 2cm and 5cm head which operates at 1 or 3mhz......I like the idea of helping myself in this way......but I have no input from anybody per se, that it indeed may help.......GOT ANY FEEDBACK ON THAT as well?

What about laser/light therapy treatments,,,,,I can get that for $35 a pop at a local clinic

Also heard something about electro-magnetic therapy, but have no idea what that is at this point


LAST WORD FOR NOW: One doctor (i have seen several)....told me that if you do treatment to early you will make the condition worse.......does this apply to radiation as well?

08/29/2013 05:48
wach 

Administrator

08/29/2013 05:48
wach 

Administrator

Re: R/T Discussion About Protocols

Hi Lowell, welcome to our forum! Our forum is assembling a lot of experience and you will hopefully find answers to your questions here. I will try to answer some of them.

"The doctor said, he does not think there is any finger involement yet, he hopes there is not because the radiation he says will not be as affective there as opposed to the palm"
Radiotherapy is equally effective everywhere in the hand but the fingers are more difficult to irradiate, specifically when the nodule is on the side or between fingers.

"MY big question is......will the radiation help, hurt, or do nothing? any insights? and what are the chances of cancer down the road......any stats on that?"
Generally, i.e. on an average, radiotherapy will slow down or stop the disease but individually it seems to be impossible to make a prediction. Everyone is different. RT doesn't hurt, it's just a very short time where you are exposed, typically in the order of 1 minute or less, and your hand will feel the same afterwards. It takes months or half a year until you feel the effect that e.g. nodules are shrinking or not growing anymore.
Cancer: have a look at our website, e.g. http://www.dupuytren-online.info/radioth...de_effects.html. There is a lot more good information this website.

"I have another question amongst many more......does ultrasound help with reducing and/or breaking up the fascia, and relieve soreness of a nodule?"
No.

"What about laser/light therapy treatments"
Probably no effect either but who knows. http://www.dupuytren-online.info/dupuytr...s_research.html

"Also heard something about electro-magnetic therapy, but have no idea what that is at this point"
Many people and companies try making money from patients. There are no solid reports on the effectiveness of an electromagnetic therapy for Dupuytren's.

"One doctor (i have seen several)....told me that if you do treatment to early you will make the condition worse.......does this apply to radiation as well?"
Yes for surgery, no for radiotherapy. On the contrary, the earlier you treat the more effective is radiotherapy, see "Radiotherapy - when to apply best" on http://www.dupuytren-online.info/radiation_therapy.html.

Wolfgang

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