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Success with Radiation Therapy in Richmond VA
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04/15/2010 23:10
Dealer 
04/15/2010 23:10
Dealer 
Success with Radiation Therapy in Richmond VA

In 2005 I had surgery for DD on my left hand, pinky and ring finger. I had let it go pretty far, and unfortunately my body doesn't heal well, it forms near keloid scars over the incision. The recovery was horrible, and the 5 months of time consuming PT with nothing to show for it was depressing. It's been 5 years and my left hand looks like I never sought treatment with a 40%+ angle to my pinky.
About 10 months ago I noticed the same growth appearing in my right hand. Rather than get a cord in my palm, I get nodules in my knuckles. I went to a surgeon who assured me that surgery on my right hand would bring the exact same (undesirable) results as my previous surgery on my left hand. I then contacted Dr.s who had been involved with the trial for Collagense and was told this treatment would not work for me, it only works on cords. Ditto for NA. Last resort - Radiation.

I went to visit Dr. Weiss in early March and set an appointment to come back in early April and go through the 7 treatments (Monday to Friday, then the following Monday and Tuesday). I spent the first week assuming I was wasting my time and money, but by the last two treatments I could see the nodules shrinking. Its only 48 hours later but the larger nodule on my right pinky has shrunk to the size it was back 5 months ago. I had no pain, no problems and hopefully no long lasting effects from the radiation.

The staff of VCU Massey Cancer Center is marvelous. Dr Weiss is easy to deal with. Her Radiology Assistants, Kelby and Tammy were friendly and professional. I would do this again if I have to.

04/17/2010 14:52
PhilipHa1 
04/17/2010 14:52
PhilipHa1 
Re: Success with Radiation Therapy in Richmond VA

You might expect further improvement over the next 3 months or so....when I had radiology about 50% of the improvement occured during the 5 day treatment and the remainder gradually over the next 3 months.

04/17/2010 19:58
paradise 
04/17/2010 19:58
paradise 
Re: Success with Radiation Therapy in Richmond VA

Hi all

I have just yesterday finished with seven sessions of radiation theraphy at the University of Oklahoma Health Sciences Center with Dr. Herman. The treatment was for my feet. In the time period between my last post and today's date, I now have DD in both hands.

Unfortunately, I do not see any difference in the tumor in my left foot. It is really sore now and do not know if that is from the radiation or if the tumor is is active and expanding.

I do hope I see some regression with my left foot. I had pinned great hope on the radiation, which by the way was 9 electrons. Have no idea if that is the normal amount or not.

Dr. Herman did say that it appears that mine is a very aggressive form. Sooooooo, pretty beat right now - off to rest. Will post more later.

04/18/2010 18:27
LubaM. 
04/18/2010 18:27
LubaM. 
Re: Success with Radiation Therapy in Richmond VA

I didn't see any immediate changes after radiation on the two noodules I had on the bottom of my left foot...
The nodules were the size of marbles and quite hard to the touch...Five months after radiation, they are flat and almost gone...

I also had radiation on nodules of my left hand where I had radiation for Dupuytrens...there is improvement on the hand as well.

Hopefully you'll see positive changes soon. It might be too early to tell.

Edited 04/18/10 21:29

04/18/2010 19:02
paradise 
04/18/2010 19:02
paradise 
Re: Success with Radiation Therapy in Richmond VA

Aloha and thanks for the upbeat recount of your own radiation therapy, LulaB.

Gives me great hope that my own will follow suit. How strong was your electron radiation, if you don't mind my asking?

I am scheduled to go back in May for the first treatments in my hands. The growth there is quite rapid. I have been experiencing complete numbness in the three fingers (minus the thumb and forefinger) in each hand. When I spoke to Dr. Matheson about this - his reply was that he felt the numbness had absolutely nothing to do with the DD. I am talking complete numbness, folks. He suggested that I see a neurologist and that there might be something else going on.

Anyone else had this problem. The numbness subsides throughout the day - but, is there for several hours during the morning time.

I also have tendinitis in my thumbs. Hmmmm........what else can happen? LOL

Thanks again for your post, honestly.

06/17/2010 18:23
TomVirginia 
06/17/2010 18:23
TomVirginia 
Re: Success with Radiation Therapy in Richmond VA

Dealer
100 % agree your statement "The staff of VCU Massey Cancer Center is marvelous. Dr Weiss is easy to deal with. Her Radiology Assistants, Kelby and Tammy were friendly and professional.

Unfortunately for me my results were less then stellar. I had my 7 treatments on both hands in October of 2009 and was very happy in the short term. Aching and cramping disappeared (left) and I was looking forward to living pain free with a 25 degree bend in the small finger of the left hand. My right hand is not contracted but has 3 nodules and 3 cords which I THINK have been arrested. About 4 or 5 months after treatment my left hand seems to have shaken off any and all effects of the radiation. Cramping and aches have returned and contraction has progressed another 15 degrees. At my 6 month follow-up Dr. Weiss said has done all she can with my left hand so I am back in the Forum looking at other non-surgical treatments.

I will continue to monitor my right hand and occasionally report back. If me progression has stopped in the treated area of my right hand then that alone was worth the price of admission.

About VCU I will add - 3 cheers for the Valet Parking Staff and Henry who I will guess was an aid and worked dillegently every day spreading cheer and hospitality.

06/18/2010 03:28
flojo 
06/18/2010 03:28
flojo 
Re: Success with Radiation Therapy in Richmond VA

Did they radiate specific areas of your hand or the whole palm? Just wondering what the mapping looked like for you RT.

06/18/2010 03:57
TomVirginia 
06/18/2010 03:57
TomVirginia 
Re: Success with Radiation Therapy in Richmond VA

My entire palm of my left hand was zapped along with the left pinky finger up to and including the 2nd joint.
It just plain and simple didn't take over there.

Right hand is a slightly different story. Almost the entire palm From the base of the fingers and up to 1/2 inch around the periphery.

I have had this disease with little change occurring during he last five years in my right hand. That this nodule popped up along with a thumb cord came as quite a surprise.

Looking at Xylaflex but concerned about the $$ with it being so new. Leaning toward a trip to Florida.

06/18/2010 04:10
flojo 
06/18/2010 04:10
flojo 
Re: Success with Radiation Therapy in Richmond VA

From all I have read, you can't go wrong with Dr. Eaton.

06/18/2010 21:21
LubaM. 
06/18/2010 21:21
LubaM. 
Re: Success with Radiation Therapy in Richmond VA

TomVirginia:
Aching and cramping disappeared (left) and I was looking forward to living pain free with a 25 degree bend in the small finger of the left hand. My right hand is not contracted but has 3 nodules and 3 cords which I THINK have been arrested. About 4 or 5 months after treatment my left hand seems to have shaken off any and all effects of the radiation. Cramping and aches have returned and contraction has progressed another 15 degrees.

If you small finger continues to progress and is now at 40 degrees, you should consider NA soon before it gets worst, especially if the contracture is in the middle (PIP) joint. The small finger PIP joint is hardest to correct and usually you can only expect a 50% correction.

I have DD in both hands and Ledderhose in one foot. Have had RT on left hand and left foot...so far so good, it seems to have stopped the progression.

In my right hand I have a contracted pinkie at the PIP joint and a boutonniere at the DIP joint. The first time my PIP was at 45 degrees and I had NA with Dr. Denkler in 2006. The contracture started to return after six months. In March 2010 my PIP was at 90 degrees and I had a second NA, this time with Dr. Eaton in Florida. I was told both times that I can only expect a correction of 50 %. However, my finger is currently at about 20-25 degrees and I am hoping it will last longer than the first time. Both doctors are wonderful but I believe that Dr. Eaton is more experienced since he was the first doctor to bring the NA procedure to the U.S. If I need NA again I will definitely go back to him.

I would suggest to do NA sooner rather than later, before the contracture gets worst. NA is in my opinion still a better choice than other treatments. I would rather do repeat NAs than go through surgery.

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