| Lost password
430 users onlineYou are not loggend in.  Login
Radiation Yes or No Doctor states it does not work
 1 2 3
 1 2 3
08/29/2013 03:12
pia2some 
08/29/2013 03:12
pia2some 
Re: Radiation Yes or No Doctor states it does not work

And I hate to say it, my finances factor into my decisions. While I want the best of care and the best doctor and treatment available, I have to consider what it will cost and weigh that against the success rate of that procedure. The expense of NA with Dr. Kirkpatrick is so much lower than a treatment of Xiaflex. I don't ever plan to use Xiaflex again for many reasons, but one is the cost. Now I need to weigh the decision of having open surgery as opposed to NA. I'm doing that based on the potential success based on the finger and the degree of involvement of DC in that area.

~ dawn

08/29/2013 05:55
wach 

Administrator

08/29/2013 05:55
wach 

Administrator

Re: Radiation Yes or No Doctor states it does not work

On an average RT is effective and to prove this you need to track results of a larger number of people over a long period of time "Long-Term Outcome of Radiotherapy for Early Stage Dupuytren’s Disease: A Phase III Clinical Study" http://link.springer.com/chapter/10.1007...-642-22697-7_44 . Individually the outcome of RT is unfortunately quite difficult to predict. It also depends on how long you already had the nodules, whether they became active again etc.

Wolfgang

pia2some:
I emailed with a cousin who has DC. Everyone on that side of the family does. He had RT in California a few years ago. He said that at first it seemed to have helped. The nodules did soften and didn't change for a few months. But within a year he had several prominent cords and quite a few nodules. So how do we know that it is really that effective? Xiaflex helped for about six months and now that finger is worse than before.

Some people are helped by RT, some by Xiaflex and NA. While someone is treated with one procedure and has good results for years, another person can receive the same treatment and have it return within months. It's really difficult to know which option to go with, you know?

If you do RT very early on, are you then limited to how many more times you can use RT? Just curious.

~ dawn

08/29/2013 05:58
wach 

Administrator

08/29/2013 05:58
wach 

Administrator

Re: Radiation Yes or No Doctor states it does not work

The effect is quite well researched for Dupuytren's nodules and evidene is far beyond anecdotal http://www.dupuytren-online.info/radioth...literature.html . The effect of treating knuckle pads with RT is different. I am not aware of any study on that.

Wolfgang

cschieber:
...The evidence for RT is anecdotal and maybe many who were treated wouldn't have progressed anyway but based on my experience and that of others on this forum, I believe it does work in some cases.

08/29/2013 12:08
joshlin9693 
08/29/2013 12:08
joshlin9693 
Re: Radiation Yes or No Doctor states it does not work

I would try to get into see other doctor for second opinion. Call research hospitals/universities and ask for someone who would treat this. Call Emory right there in Atlanta. You need a radiation oncologist. That's who did mine. Dr. S in Germany has had great success with patients in the beginning stages. I too had that itchy crawly feeling. It has stopped since I had my first round of radiation. Second round in a few weeks. The fact that my insurance company Aetna covers it, tells me that it's not just experimental. They have articles on it in their system. Here is a link: http://www.aetna.com/cpb/medical/data/800_899/0800.html

08/29/2013 18:50
JohnG 
08/29/2013 18:50
JohnG 
Re: Radiation Yes or No Doctor states it does not work

1. How am I to determine if I am at the stage for RT? Apparently I am going to have to convince the oncologist. I do experience the crawling sensation. My guess is it is active.

Aside from the sensations like crawling, are new nodes appearing, or are old nodes growing?

2. Do I listen to Dr. Kay Kirkpatrick and not attempt radiation since she says it does not work for DD?

The German clinical trials are persuasive that it tends to work well for nodules in early stage, but doesn't work well for cords in advanced stage. The fact that the treatment has not become common yet in the U.S. does not mean that it is not a good treatment. One obstacle for it to become common is that most radiation oncologists don't have experience with diagnosing DD -- you have taken a good step by engaging a hand specialist to diagnose the condition before going to a radiation oncologist.

3. Who out there has had radiation for DD?

I did earlier this year.

4. How successful has radiation been for you? (please provide details)

In the German clinical trials, they followed up on their patients several years later. In my case it has been only a few months, so it is too early to say, but I can say that my nodules have not grown since treatment.

5. How do you make sure ALL the diseased area is radiated?

In my case, I went to a hand surgeon (who had no experience with radiation) and showed him a photo of the ink markings that Dr. S made on his patients to indicate the nodules and cords, and an outline around them to define the radiation "field" i.e., treatment region. I asked the hand surgeon to mark my hand up the same way. He then palpated my hand, and marked the field that he recommended, which looked a lot like those for Dr. S. I then took a photo of my hand before the ink washed away, and I took that photo to the radiation oncologist (who had no experience with DD) along with the German clinical trial journal articles. The radiation oncologist used the photos to define the radiation field.

If you went to a radiation specialist who had more experience with DD like Prof. S, then he/she could palpate your hand to define the radiation field without needing the assistance of a hand surgeon. My experience was that my radiation oncologist had no idea of what to do, regarding palpation -- neither he nor his resident assistant thought of using their own fingers to feel my hands, unlike the hand surgeon who immediately uses palpation on your hand when you mention DD.

08/30/2013 03:06
stephenp 
08/30/2013 03:06
stephenp 
Re: Radiation Yes or No Doctor states it does not work

I had RT on both hands which has worked in that the disease has not progressed, nodules have become smaller, flatter and softer and on one hand a early stage cord a gone.

I presented the GP and then the radiologist with a number of papers including the one referred to above. Both were receptive.

"Long-Term Outcome of Radiotherapy for Early Stage Dupuytren’s Disease: A Phase III Clinical Study" http://link.springer.com/chapter/10.1007...-642-22697-7_44 .

In summary, where RT was given prior to contraction, DD progressed in around 5% of patients compared with 35% of non treated patients.

I can email this paper to anyone who has trouble getting a copy.

If this still doesn't work, change doctors.

08/30/2013 11:02
Jolene 
08/30/2013 11:02
Jolene 
Re: Radiation Yes or No Doctor states it does not work

stephenp:
I had RT on both hands which has worked in that the disease has not progressed, nodules have become smaller, flatter and softer and on one hand a early stage cord a gone.

I presented the GP and then the radiologist with a number of papers including the one referred to above. Both were receptive.

"Long-Term Outcome of Radiotherapy for Early Stage Dupuytren’s Disease: A Phase III Clinical Study" http://link.springer.com/chapter/10.1007...-642-22697-7_44 .

In summary, where RT was given prior to contraction, DD progressed in around 5% of patients compared with 35% of non treated patients.

I can email this paper to anyone who has trouble getting a copy.

If this still doesn't work, change doctors.


Please email me a copy. I am unable to get it using the link.
patty.carder@gmail.com

thank you

08/30/2013 11:32
Jolene 
08/30/2013 11:32
Jolene 
Re: Radiation Yes or No Doctor states it does not work

Hello,
I want to thank everyone for their input.

This is concerns regarding when to begin RT

I have one tiny, tiny nodule that is NOT visible to an untrained eye. If I did not know about this disease I would have thought it was a callus that was not going away.

I have a few areas that have the soft effect like a soft tomato.
I can feel cords in the underlying areas of the skin. Only because I know what to look for.
My coworker on the other hand cannot detect any of this as coworker has no experience.

The hand specialist Kay Kirkpatrick:
She is extremely knowledgeable. Her and her assistant was able to detect DD in both hands. She had said I am at such an early stage but you can feel the thickening under the skin. Although she states she does not hold much weight to RT working, she did write me a prescription for the oncologist to do radiation. She also ask that I keep her updated. She wants the oncologist to stay in contact with her in regards to my treatment plan and the outcome. All in all I really liked Dr. Kirkpatrick. However she did say I am in way to early of a stage for her to treat me as she uses NA.

Once again my concern:
Am I in to early of a stage for RT? Must you visibly See the nodules before RT?
I have the tightening of the skin. I have the crawling burning sensation on occasion.

I am going Tuesday for MRI on both hands. Not sure what it will show. I fly back to Florida for 2nd round of RT on foot. Would like to begin RT on hands at that time.

How do I know if it is too early to begin RT?
Is there a stage that one can be in were it is actually too early to begin RT?

.

08/30/2013 13:04
ell 
08/30/2013 13:04
ell 
Re: Radiation Yes or No Doctor states it does not work

Jolene - That's the problem, isn't it? What to do when for this disease is like a big crap shoot. I'm not an expert but it sounds to me like you're at the perfect stage to get the radiation. It's early and sounds like it's active, as you are noticing things developing.

I talked with 2 hand specialists before I had radiation, for which I self-referred. Both are noted surgeons and one trained with Dr. Eaton and is listed on this site - if I ever need NA, he's my man. But both told me the same thing about RT that every other surgeon seems to - no evidence that it's effective. Not recommended. Surgeons heal by cutting. American medicine often seems behind the times, perhaps because of the ludicrous health care system we have to suffer with.

I know the data & studies on RT are not great, esp since so many people with this disease would not progress in any case. I'm glad I had the RT although the jury is still out on the results. I'd probably do it again. For me, finding an experienced, enthusiastic radiologist-oncologist was key. This practice is open to treating benign diseases with radiation but others are not. I hope you can find someone like that.

08/30/2013 18:39
Jolene 
08/30/2013 18:39
Jolene 
Re: Radiation Yes or No Doctor states it does not work

Thanks Ell for yoyur input.

I had RT on the foot 6 weeks ago. On day 3 of 1st round the crawling sensation stop. Hooray!! have ben bragging on this. But NOW...TODAY...I have sensation back in the foot. The same crasling, tingle numbnes sensation as before.
in 10 days I go back round 2. This ends the RT on the foot.
So What Does This Mean???
Does this mean RT has not going work?
Im scared

 1 2 3
 1 2 3
disease   dupuytren-online   treated   symptoms--nodules   contraction   successful   Dupuytren’s   sensation   treatment   experience   patients   Radiation   radiologist-oncologist   progressed   effective   Kirkpatrick   crawling   nodules   oncologist   radiation--perhaps