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02/27/2012 18:17
db_9 
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02/27/2012 18:17
db_9
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Re: Radiation in US
Flojo, thank god for this forum! It is very frustrating that you have to find a forum like this just to ask the correct questions to your doctors. Some of them have no idea about these other treatments.
Did you do the RT 5 days in a row and then go back for another round 6 weeks later? I posted this in another thread, but the doctor I am talking to said he has now switched to 7 days in a row. No going back afterward.
Also I imagine you had an oncologist administer the radiation? If so are they the ones that diagnosed that your whole hand needed the radiation? Or was it the "hand doctor" you went to.
Also are there any red flags I need to watch out for when meeting with the oncologist? Like what questions did you guys ask yours when you had your consultation?
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02/27/2012 18:23
spanishbuddha  Administrator
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02/27/2012 18:23
spanishbuddha Administrator
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Re: Radiation in US
Just to put a contrary point of view hopefully as a clarification.
I don't believe that RT is appropriate for all as 'early treatment' but rather the phase or stage that the disease is at.
For example last year I had RT in the left hand performed by ProfS in Hamburg, because I described symptoms to him that indicated the disease was at an active stage, plus his own examination.
He examined my right hand too and found early signs of the disease, but because I was not experiencing some symptoms he would not do RT.
There are reports on here of people having RT after NA or surgery to correct a contracture. Hardly an early stage of the disease.
If I remember the Prof had a checklist or score of indicators that had to reach a threshold before he would do RT. Otherwise, he said it was a waste of time.
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02/27/2012 18:33
dwilson540 
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02/27/2012 18:33
dwilson540
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Re: Radiation in US
Get 3 doctors and you have 3 opinions. And of course, everyone's hand and body is different. And right now I have a daughter-in-law going to MD Anderson in Houston because doctors at another very good teaching hospital mis diagnosed her brain cancer, two surgeries unneeded, one chemo unneeded, and one radiation treatment unneeded, plus the lost time etc. And medicine is in many ways an art, not a science.
All that being said, I am sure I was in the beginning, small bumps across the palm of my hand, barely noticeable, but you could feel them. No contracture anywhere. And of course it is difficult to say, did the RT stop it, or was it just an intermission stage that has now lasted almost 4 years? Who could say?
I think one of the lessons that I've learned with my daughter in law is to get a couple of opinions from experts with the particular type of treatment. RT, go to radiation people who have treated this in the past. Do the research, just as many are on here now doing.
It may well be that one size does not fit all and that at the end of the day you're going to have to go with what seems to fit you.
Dale
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02/27/2012 20:04
BRIANB 
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02/27/2012 20:04
BRIANB
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Re: Radiation in US
3 docs 3 opinion.... get this.
A friend just went to a hand surgeon..told my friend that he does indeed have Dupuytren's..
The Doctor then told him that he does not perform N.A. but that he could operate on his hand,in the office,and correct his contracture. And the best part is...the Doc assured him that the Dups would never return...
Now this is a classic....of all that I have heard and read,about this disease.
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02/27/2012 20:28
callie 
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02/27/2012 20:28
callie
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Re: Radiation in US
BrianB,
That is quite a statement. I wonder if the communication was misinterpreted? My surgeon did say that he had very few who had to get surgery again. But that is not close to the statement "that the Dups would never return".
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02/28/2012 05:18
flojo
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02/28/2012 05:18
flojo
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Re: Radiation in US
Quote:
Did you do the RT 5 days in a row and then go back for another round 6 weeks later? I posted this in another thread, but the doctor I am talking to said he has now switched to 7 days in a row. No going back afterward.
Also I imagine you had an oncologist administer the radiation? If so are they the ones that diagnosed that your whole hand needed the radiation? Or was it the "hand doctor" you went to.
Also are there any red flags I need to watch out for when meeting with the oncologist? Like what questions did you guys ask yours when you had your consultation?
To me early treatments are those that do not let it progress to the stage where surgery is the only option. NA and Xiaflex are treatments that release contracture. For me, NA released contacture of about 20 degrees in my palm, and yes, it was early in my disease. I did have successful RT after the NA. In my case, there was some contracture AND Dupuytren's was active at the same time. Yes, you can have contracture and active Dupuytren's. I certainly did. I've learned that one size does not fit all when it comes to Dupuytren's. I've learned that from descriptions of others disease and also from my own two hands.
Yes, it is critical that Dupuytren's is in the ACTIVE phase for RT to be effective. My oncologist at Scripps asked questions about my symptoms and was assured that it was in the active stage before he would do RT.
The RT protocol that I had at Scripps 2 1/2 years ago was 2 Gy x 5 days, a weekend without RT and the following week, 2 Gy x 5 days for a total of 20 Gy. So this protocol did not wait several months in between. This protocol worked for me and I am a happy about it. The oncologist made the determination about where to radiate based on my description of my symptoms and he also palpated my hand thoroughly. He made marks on my hand and a pattern was drawn on paper and used to make the metal plate with a hole in it. That is what directed the rays to the specific area of my hand.
I plan to have LLUMC do RT on my left hand if it becomes clearly active Dupuytren's. The oncologist is Dr. Katerelos and I feel very confident in his knowledge based on research and training, his skills, and his familiarity with Dupuytren's. Based on his research of the various protocols of RT for Dupuytren's, he uses 3 Gy x 7 days with no 2nd round for a total of 21 Gy. He described the research and his rationale for choosing 3 x 7 days. Both the Scripps and LLUMC protocol are low doses of radiation. If low dose is effective, I opt for that. With this low dose, another round of RT can be done in the future if necessary. I'm approaching 3 years after RT at Scripps and there have been no new nodules in the area radiated.
Why LLUMC and not Scripps again? LLUMC had a great oncology department. I am fully confident with Dr. K who has a special interest in Dupuytren's. The billing department at Scripps handled the claim to Medicare very poorly in my case, it was denied by Medicare, and Scripps did nothing to follow through on an appeal. LLUMC is close enough for me to comfortably drive for daily radiation treatments. I sought out LLUMC and Dr. Katerelos was interested in providing RT for Dupuytren's patients. Dupuytren's on my left hand was not clearly active when I first went to him. It is still not clearly active, but if and when it decides to get active, I and Dr. Katerelos are ready to go.
People in general and people on this Forum think differently about what is best. I say, each person has to decide what is best for them. In my opinion, there are a number of excellent oncologists who do RT and hand specialists who do NA. If an oncologist can pinpoint a small tumor in a brain or prostate gland or whatever and provide effective radiation, they can treat my non-cancerous Dupuytren's. BUT, they still have to be knowledgeable about Dupuytren's. I have no hesitation about being Dr. K's first patient, but I think he has provided RT for at least one other patient since I first saw him.
@db_9 - I agree, Thank God for this Forum. It has helped me and so many others. That is not to say that your decision will be easy. Keep reading, researching, and asking questions on this Forum. At some point, you will be ready to make a decision. What is best for someone else is not necessarily best for you. Good luck!
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02/28/2012 13:24
cureall
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02/28/2012 13:24
cureall
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Re: Radiation in US
could someone please define what it means: ACTIVE? Is it tingly, aching, etc?
I don't have any tingling or achiness at all. Is that non-active?
Thanks,
cureall
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02/28/2012 13:29
dwilson540
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02/28/2012 13:29
dwilson540
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Re: Radiation in US
Each case is probably different, but I didn't have any tingling, numbness, etc. All I had were several really small bumps on the palm of my hand. You couldn't even see them, only feel them. But they had grown from nonexistent to something noticeable over a couple of months. I Googled bumps on palm and came up with the Dupuytren diagnosis myself and went to a doctor to have it confirmed.
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02/28/2012 14:41
callie
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02/28/2012 14:41
callie
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Re: Radiation in US
The big question I have about the early intervention and "success" is the number of people who have "success" without doing anything. It is not unusual (perhaps usual) for Dupuytren's to go dormant after the initial "active phase). Mine did for 15 years. Many (perhaps most) people never need a procedure after that initial "active phase". So, are we getting "false positives" from the early intervention? I think in a significant amount, the answer is "yes".
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02/28/2012 15:15
wach Administrator
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02/28/2012 15:15
wach Administrator
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Re: Radiation in US
Callie,
have a look at the results of the control group (from Eaton et al. "Dupuytren's Disease" (Springer 2012), chapter 44):
______________Control____ RT (12 Gy)____RT(30 Gy)
Disease
progression______ 52% _______ 22 % _______ 16 %
You are right, even without treatment Dupuytren's might come to a halt but the odds are much better with RT.
Actually, the results might even be better if RT is done very early ("Radiotherapy - when to apply best" on http://www.dupuytren-online.info/radiation_therapy.html)
Wolfgang
callie:
The big question I have about the early intervention and "success" is the number of people who have "success" without doing anything. It is not unusual (perhaps usual) for Dupuytren's to go dormant after the initial "active phase). Mine did for 15 years. Many (perhaps most) people never need a procedure after that initial "active phase". So, are we getting "false positives" from the early intervention? I think in a significant amount, the answer is "yes".
Edited 02/28/12 17:16
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