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Looks like RT for me soon !!
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02/20/2010 22:48
drumhead 
02/20/2010 22:48
drumhead 

Looks like RT for me soon !!

ALL - Thanks to the awesome information on this Forum, looks like I'm in line for Radiation Therapy now! I've got DC (mostly in check now) and a bad case of Ledderhose on both feet (8-9 nods on each foot). I called University of Oklahoma Health Sciences Center with Dr. Terence Herman and, if insurance does in fact take care of me on this, I'm gonna dive in and get 5-day treatment on my feet. I might also get it on a lingering pip-nod that was super aggressive, as well. I am very, very happy. Spoke with his assistant, and U of O has done several DC patients and a couple of Ledderhose patients. The results, she said, were just great so far.

I'll let everyone here know how it goes because I'm not in the early stages, but in later stages with progression full on. I'm 53 now, and had both of these issues since about 30 years old. I avoided 'the knife' for my feet, due to the dangers and possible recurrence. Happy is not enough of a word to describe my feelings - guarded, right now until I hear about the insurance, but it is looking very good so far. Patients with the same insurance have been approved for DC therapy at U of O and I'm hoping since I'm in the advanced stages, that some GOOD will come from this, not just for myself, but for everyone reading this right now.

Wolfgang - thanks so very much for listing the Clinics - I almost didn't call them, but when you are OUT of options, what can it hurt to pick up the phone?? In this case, it is like a new lease on life, even if the results just soften or stop the progression! From what I've read so far, it seems to be fairly safe and mostly effective. I promise to report back once my initial 5-day is done. I'm pretty sure I'll have to do at least another round (because of my severity), but hey, it seems to be happening for a reason. Again, I can't tell you enough how much I appreciate all of you - I share your frustration, pain, and helplessness over these awful diseases. I thought I would have this problem until my life was done, but it's not over until it's over

Everyone hang in there - I do think help is on the way!!! Wolf - thanks again, man. I really appreciate you and everyone who steered me this way.

Drumhead (if any of you want to contact me, I'll be happy to pass on details directly to your email)

02/21/2010 00:28
flojo 
02/21/2010 00:28
flojo 
Re: Looks like RT for me soon !!

Good luck! RT is supposedly effective on Dupuytren's and Ledderhose when it is active. Sounds like yours definitely qualifies as active.

02/21/2010 00:47
LubaM. 
02/21/2010 00:47
LubaM. 
Re: Looks like RT for me soon !!

Drumhead....
I had RT on my left hand for nodules, as well as RT on my left foot where I have 2 nodules in the arch of the foot. My Ledderhose seems to be much less than yours from what you describe. I am very satisfied with the results so far.

Although I never had a problem with the Ledderhose as far as walking on it, no pain from it....I did the RT on the foot to prevent the nodules from growing bigger.... After 3 months the 2 nodules are softer and a bit smaller, not gone.

My RT was with Dr. Tripuraneni at Scripps in LaJolla, CA.

Hope your treatment goes well when you do it.

02/21/2010 01:26
Wolfgang

not registered

02/21/2010 01:26
Wolfgang

not registered

Re: Looks like RT for me soon !!

Drumhead, thank you for your kind comments! We are all in one boat. Don't expect RT to have an immediate effect (except drying the radiated area). Give it some time, maybe 3 months and watch whether it made a change. The outcoume differs from patient to patient, we are all different, but usually RT is a good means for treating Ledderhose.

Wolfgang

Quote:



ALL - Thanks to the awesome information on this Forum, ...
Everyone hang in there - I do think help is on the way!!! Wolf - thanks again, man. I really appreciate you and everyone who steered me this way.

Drumhead (if any of you want to contact me, I'll be happy to pass on details directly to your email)


02/21/2010 13:25
drumhead 
02/21/2010 13:25
drumhead 

Re: Looks like RT for me soon !!

Thanks, everyone. I'm keeping my expectations in the lower area, but I'm optimistic about this because it offers up some treatment that doesn't involve cutting - once you cut - you are in a precarious predicament IF those nods come back on your feet. On the hands? I've had repeats on two fingers, but DC surgery seems safer than the bottoms of feet, you know? If RT requires 2-3 rounds, I'm good with that. Even if this RT takes a while and gets semi-good results, I'll be happy. Also, the pip/nods removed from my fingers, most of them never returned. Two came back, and the 2nd surgeries have been good - only the right index finger has been a little troublesome - but, if you can get surgery on your hands/fingers, I would do it. I've NO impairments except for some stiffness in the right index (which, btw, was the only finger to have cord growth on the BOTTOM of the finger). As for the pip/knuckle fingers, they are fine. Leads me to believe the stiffness is from cord removal - seems much less problematic with the knuckles only.

Wish you could all go with me. Once I get RT, I'm going to really scrutinize the results and report back. In time, I can see this being offered up to everyone with these diseases. Can't see this not being available to everyone, since it IS a disease. Newer treatments always have to 'prove out' before they can be universally accepted (and covered), I suppose. More later,

Drum

03/19/2010 12:58
Hippo

not registered

03/19/2010 12:58
Hippo

not registered

Re: Looks like RT for me soon !!

Drum--Congrats on finding a doc to do RT!! I truly hope you have the desired results! I have a lead on a doc who may be willing to do RT on feet. Do you or Wolfgang happen to have exact dosage, etc, of the RT that is being used? I would like to have any info on that so I can share it with my doc. Thank you all in advance! Again, best of luck!

03/19/2010 23:39
mike59 
03/19/2010 23:39
mike59 
Re: Looks like RT for me soon !!

Congrats on finding someone to do it. Good luck!

03/20/2010 04:34
newman 
03/20/2010 04:34
newman 

Re: Looks like RT for me soon !!Attention Hippo

Australia Calling. Hi -the information you are seeking is availabe on this site. Prof Seegenschmiedt has published on line sections of the book Radiotherapy for Non-Malignant Disorders. Click on the literature in radiation therapy section -left para. In the first para- click"published on line" and scroll through the paraagraphs relating to Morbus Dupuytren/Ledderhose. I received the low dose radiotherapy (30 Gy) to both hands and feet. Regards.

Edited 03/20/10 06:36

03/22/2010 02:55
Hippo

not registered

03/22/2010 02:55
Hippo

not registered

Re: Looks like RT for me soon !!

Thank you Neman! How were your results? How many times did you go? I am not going to have it until I have fully recovered from Ledderhose surgery. It is taking so long to recover from! I am going on 6 weeks and still no weight bearing and have swelling. There is no way I can have surgery again on my other foot!! Any experience you or anyone else can share would be greatly appreciated! I do plan on sharing my experience once I am underway. Thank you again and kind regards....

04/09/2010 16:11
patandpaula 
04/09/2010 16:11
patandpaula 
Re: Looks like RT for me soon !!

Hey Drum,
I just called Dr. Herman and they are checking my insurance. I live in the Dallas, Texas area, so I guess perhaps I would stay there in OKlahoma City for the five days. Will you please let us know how it went after you have it? Assuming you have it before I do. I too will post on the board as to how it went and am hopeful.

Is there anyone out there who has been to Dr. Herman please? If so, can you give me your opinion on how it went? thanks

Paula

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