Radiation Treatment in Virginia (3 | Dupuytren | Forum for Dupuytren's contracture

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Radiation Treatment in Virginia
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18.11.09 09:32
wach 

Administrator

18.11.09 09:32
wach 

Administrator

Re: Radiation Treatment in Virginia

Are you aware that Xiaflex is not aiming to treat nodules but fingers contracted by cords? http://www.dupuytren-online.info/dupuytren_collagenase.html

Wolfgang

Quote:



Quote:

what is enzyme therapy on nodules????

----------------

I'm referring to the Xiaflex, collagenase treatment.


19.11.09 15:29
ET160 
19.11.09 15:29
ET160 
Re: Radiation Treatment in Virginia

Yes, but I expect that after a few years that treatment will be broadened. That's the impression that I got from one of my doctors. I could be wrong, of course.

23.01.10 08:14
AP_in_DC 
23.01.10 08:14
AP_in_DC 
Re: Radiation Treatment in Virginia

I was just diagnosed last week with DD. I got on the web right away and found this website - very helpful! I am a 49 year old woman with no known family history. So far I have nodules in both hands, and what might be a knuckle pad, but no cords or contracture. I noticed the knuckle pad in August (because my finger starting hurting when I bent it), the first nodule in October or November, and the other nodules around December. I'm not sure if the nodules all developed quickly, or if I just started noticing my hands more once I found the first one, so I found more soon afterwards.

Also, I was diagnosed with frozen shoulder about a year ago, which I've now learned is likely related.

After a lot of reading on this website and elsewhere, I'm very interested in the idea of RT. (The doctor who diagnosed me is a hand surgeon, and as many have experienced, didn't mention RT to me at all -- in fact, he said "there are no conservative treatments" and told me to come back in a year.)

I am seeing another doctor (yes, another surgeon) this week to get a second opinion on the diagnosis. Once that is confirmed, as I suspect it will be, I was considering making an appointment at VCU to discuss RT. VCU is is about a 3 hour drive for me (I'm in DC).

I really appreciated hearing everyone's experience with VCU and other RT clinics. For those of you that have had the RT, I'd love to get an update on how it's going!

Also, a few questions --

1) I noticed that in older posts (2007 or so) a lot of people mentioned Dr. Cuttino at VCU, but more recent posts refer to Dr. Weiss. Is Dr. Cuttino no longer there?

2) Does anyone know of a doctor in the DC area who is knowledgeable and open to treatments other than surgery?


Thanks again for all your help!


23.01.10 19:04
Diana 
23.01.10 19:04
Diana 
Re: Radiation Treatment in Virginia

I think that is correct. When I called in spring of 2009, Dr Cuttino was not treating patients with Duputren's but Dr. Weiss was.

Diana

24.01.10 06:22
flojo 
24.01.10 06:22
flojo 
Re: Radiation Treatment in Virginia

I had RT on my whole right palm, including all metacarpal-phalangeal joints, in July by Dr. T at Scripps in San Diego/La Jolla. My thumb was most involved, and I had NA first to release it and several cords in my palm. I still had a palm full of nodules, itchy sensations and the nodules were increasing in number and size. Since RT, no itchy palm, reduced nodules, greater flexibility, stronger grip that had become very weak, wider span from thumb to pinky, no new nodules, no indication of active DD in the area radiated. I am watching my left palm and the other joints of my radiated hand for signs of active DD. It needs to be active for RT to work.
I believe my dermatologist and general practitioner would recommend RT to DD patients because they saw my hand before and after. As for other doctors, especially surgeons, I doubt they would recommend it. I just did it based on my research, mostly found on this site. There is much more now, more providers listed here and more people who have had RT and posted results on this site.

Early treatment of RT is better than later. I won't wait for my left hand to develop contracture. I'll get RT as soon as it is clear that it is active.

I am now 72 and it showed up when I was 69, so it progressed fast, though not as fast as others have described.
I suggest that you use the "Search website" option in the left column. Read what others experienced and where they had their RT done. Several found radiologists who were willing to do it and they researched protocols used. I'm for the protocol with the least radiation. I had 1.8 electron radiation each day for 5 days, then again the next week M-F for a total of 18.

It is always nice if someone has experience, BUT if they know radiation, they can do it. Even if they do oncology, they know about radiation for non-cancerous conditions.

Good luck! You are definitely in the right place. It took me about 6 months before I came upon this site. Come back here and ask questions. Everybody had been so helpful. We're all members of this "club" even though none of us wants to be a member.

24.01.10 18:08
cindy850 
24.01.10 18:08
cindy850 
Re: Radiation Treatment in Virginia

I was wondering did you say you went to a dermatologist for your hands?

25.01.10 06:05
flojo 
25.01.10 06:05
flojo 
Re: Radiation Treatment in Virginia

No, not the dermatologist for my hands, but I'm on a mission to educate every medical person I come in contact with. My dermatologist was glad to know about NA and RT, because he gets questions from patients several times a year about their Dupuytren's and he only knew to tell them to go to a surgeon. Now he has seen what NA and then RT did for me.

Just spreading the word. I'll have to say that the podiatrist who would be doing surgery on Ledderhose's patients didn't show any interest at all. Everybody else has been very interested and wanted contacts. Hopefully, a few people with this disease will get a referral for one of the alternative treatments rather than having to do all the research like most of us on this site have had to do.

25.01.10 18:44
lori 
25.01.10 18:44
lori 
Re: Radiation Treatment in Virginia

The last person I remember who reported seeing Dr. Weiss in VA was "Tom from Virginia" You can find him in other threads and ask him about his experience From what I remember him writing it was good.

I too have had RT and finished it last August. I had a nodule, cord, dimpling and was just beginning to get pulling. the RT stopped it and if you looked at my hand now you would never know I had DD. I do have dry skin in that area, and still have difficulty gripping jars, screw driviers etc. Would do RT again in a heart beat.

Lori

26.01.10 21:19
cindy850 
26.01.10 21:19
cindy850 
Re: Radiation Treatment in Virginia

Can you tell me if any of you that did RT got sick or any type of side effects from this treatment

26.01.10 22:22
moondanc 
26.01.10 22:22
moondanc 
Re: Radiation Treatment in Virginia

Hi there,

Yes, I did have side effects on one hand. I had no problem at all the first time I had RT-- 1 week of treatments-- on my right hand--this RT was several months after my NA. The second time I had RT it was on my left hand and only 1 week after my extensive NA. My radiation oncologist suggested that the sooner I had RT after the NA treatment, the more likelihood it would be successful so that's why I scheduled it so soon. More than 3/4 of my hand received the radiation; the "reaction" as they call it (I call it radiation burn) was confined to a small patch, the size of a quarter in the middle of my hand where the skin is depressed a bit more than other parts of my hand. Prior to that area turning bright red, I experienced severe itching in my palm for several days. Once the skin started peeling-- similar to a bad burn-- the itching stopped. The skin continued peeling in that area --off and on--for a couple weeks. It was never painful and to this day I'm quite surprised that neither of my hands is any drier than they were before treatment and the "burn" area looks no different than the rest of my palm. I'm almost positive it happened because it was so soon after NA. I'm not quite sure whether I'd do it again that soon but I'd definitely have RT again if I thought it would be successful in stoppping the spread of this awful disease.

Diane

Quote:



Can you tell me if any of you that did RT got sick or any type of side effects from this treatment


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