| How aggressive is my DD and LD? |
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12/09/2013 06:05
SurferDad 
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12/09/2013 06:05
SurferDad
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How aggressive is my DD and LD?
Hi Everyone,
I shared for the first time several months ago (9/15/13) about my situation. I have DD in both hands and LD in both feet which all presented within a month of each other. I’m 42 and only became symptomatic about 8 months ago. I have read that the more aggressive the disease, the less successful the treatments are. However, it is difficult to gauge how aggressive you are when you don’t have much data to compare yourself to. I was wondering if you (meaning whoever feels comfortable) wouldn't mind sharing about how your journey began by answering a few questions?
* Which hands/feet were affected and did they present at the same time?
* How old were you when DD/LD started and how long before you needed treatment?
* What treatment did you try?
* Did the treatment work for your situation?
I don’t know of any database that has this type of information, however, I feel it would help me (and hopefully others) to understand how the progression of these diseases compares to others.
Thank you all for your thoughtful insights and compassionate responses. Please know that I will continue to keep you all in my prayers.
Sincerely,
Blair T.
Edited 12/09/13 08:10
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12/09/2013 14:03
Jolene 
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12/09/2013 14:03
Jolene
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Re: How aggressive is my DD and LD?
Hello Suferdad, a/k/a Blair
I was 52 when I first had signs of LD in left foot. I embarked on cortisone shots twenty (20) months ago. This shrank the two (2) nodules I had. I was able to resume all activity. BUT they did grow back nine (9) months later. So I went for another cortisone shot. This angered the nodules and they grew and grew and grew larger. I then found a podiatrist who appeared to be more knowledgeable. He put me on transdermal verapamil 15%gel. This is a slow process and even Shrank the nodules. However my mobility was still not where I had hoped. I then learned about radiation. I had 1st round of radiation July 2013. At that time the oncologist treating me did 3gy x5 days with eight (8) week break. During the 8 week break between treatments I developed it in both hands and the other foot. Upon my return to Florida for round 2 on left foot I had radiation on both hands and right foot. To date, this seems to have stop the progression in its tracks. I return on Monday the 16th for round 2 on both hands and right foot. So far all is good.
Also I would like to note that during the eight (8) week break I began to have signs of 'Frozen Shoulder'. it was painful to use my arm, lift my arm, sleep on that side of my arm. I went to a doctor. He said it was rotary cuff tendonitis but I had a hard time believing that. I honestly thought it was FS related. Another thing to note: It was in the right shoulder which was the same side of the hand that was progressing at a fast rate with DD. About 3 weeks out from radiation on that hand all the symptoms of the 'Frozen should' has left and to date has not returned
if interested you may view my blog. I have not updated it since round 1 of original foot. I have been waiting until I am completely finished with RT.
http://plantarfibroma.blogspot.com/
Edited 12/09/13 16:11
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12/09/2013 15:07
callie
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12/09/2013 15:07
callie
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Re: How aggressive is my DD and LD?
I was 55 years old when nodules simultaneously appeared in both feet and both hands. Left hand little finger contracted 90 degrees in 18 months. I had surgery on finger and it has been perfect since. Right nodules that looked exactly the same as left hand went dormant with no contraction nor cords for 13 years. I did have RT on these nodules finishing in January 2013. Nodules in feet were bothersome for about five years. After that nodules in arches went dormant until now and are not an issue at all.
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12/09/2013 19:24
lori
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12/09/2013 19:24
lori
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Re: How aggressive is my DD and LD?
I was 53 and it was my right hand. I progressed from a red spot to a nodule and a cord within a 6 month period. I had RT beginning at the 9 month period and it worked. It has been over 4 years now with no new progression in that hand. No signs of DD in the left hand.
Lori
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12/10/2013 06:58
Tamarakruse 
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12/10/2013 06:58
Tamarakruse
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Re: How aggressive is my DD and LD?
I developed nodules in both feet in January and My hand last month. They all seem to be growing at the same rate and am just undergoing RT on one foot that was most bothersome.
Tamara
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12/15/2013 00:31
SurferDad
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12/15/2013 00:31
SurferDad
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Re: How aggressive is my DD and LD?
Thank you all for your helpful responses. There have been so many recent threads/responses regarding the timing and risks of RT. This is all very informative. I will see Dr. T in San Diego soon for a consult regarding RT (both feet and maybe hands?) and I feel like I have a few more questions to ask thanks to you all.
Sincerely,
Blair T.
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