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12/27/2011 14:53
pia2some 
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12/27/2011 14:53
pia2some
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New here
I've been reading your forum and learning a lot. I am 47 years old and have DC. Almost everyone in my mother's family has it. So I knew what was happening when I saw a nodule in my right palm.
Mine seems to be progressing very quickly. I started with a nodule in the right palm about a year ago. Now there is a very defined cord running from the PIP on my pinkie to my palm. There are several nodules in my palm and a lot of dimpling. My entire hand is now tight, although none of my fingers are contracting. I cannot pass the tabletop test now. My hand/palm won't lay flat. Recently, I felt a nodule in my left palm and now have several there but no dimpling or tightness.
I've not gone to a specialist yet. We live in the USA near Atlanta, Georgia. One of the doctors who did the trials for Xiaflex is here. Dr. Bronier Costas. I am going to schedule an appointment to see him. Not because of the Xiaflex but because he has a good reputation as a hand specialist. I just want an opinion on my hands and what options I may have.
How do they determine if the disease is early stage? And what does active mean?
~Dawn
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12/27/2011 15:21
wach  Administrator
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12/27/2011 15:21
wach Administrator
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Re: New here
Hi Dawn,
when you can't pass the table top test then you already have some contracture somewhere, don't you? I am sure your doctor will be able to tell you where and to what extent.
With regard to the terminology: you are in the early stage (no contracture or just a few degrees of contracture) and you probably have an active disease because your cords and nodules seem to be growing fairly quickly. For some of us the cord or nodule may stay nearly "dormant" for 5 or more years. Those are cases where it wouldn't make sense to treat them with radiotherapy because their situation is stable anyway.
Wolfgang
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12/27/2011 15:30
pia2some
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12/27/2011 15:30
pia2some
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Re: New here
Does the tabletop test require you to lay all fingers and your palm flat? My fingers will lay down flat but the palm won't. The palm curves upward, if that makes sense.
There is a huge knot on the underside of my pinkie joint where the cord starts. It makes my finger look deformed. But even as prominent as that cord is, it's not pulling the finger inward.
I'm going to call Dr. Costas' office in a bit and see about scheduling an appointment. There is no one in our state doing RT, according to your list. Finances are going to play a huge role in treatment options. Sigh.
~Dawn
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12/27/2011 20:01
callie
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12/27/2011 20:01
callie
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Re: New here
Dawn,
Do you have insurance? Or, will you pay for all of a procedure out of pocket? You said that others in your family have Dupuytren's. What procedures did they have and how do they feel about what they did? Your decisions will probably be to do nothing, or NA, or Xiaflex or eventually a limited fasciectomy.
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12/27/2011 21:44
pia2some
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12/27/2011 21:44
pia2some
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Re: New here
callie:
Dawn,
Do you have insurance? Or, will you pay for all of a procedure out of pocket? You said that others in your family have Dupuytren's. What procedures did they have and how do they feel about what they did? Your decisions will probably be to do nothing, or NA, or Xiaflex or eventually a limited fasciectomy.
We do have insurance. My mom's hands are completely deformed. She has not wanted to have surgery as long as she can still use them. But both hands have very limited usage now. At this point, surgery is probably her only option.
Another relative has done the Xiaflex injections on one hand with good results. Her other hand required surgery and is probably going to need another surgery within the next few months.
An uncle developed DC pretty young (early 40s maybe) and he's had surgery 4 times and it's back as bad as ever. Several other relatives only have it mildly and have had no treatment.
I did get an appointment with Dr. Costas for January 20. What worries me is how rapidly my right hand is getting worse. I want to be sure that I know what all my options are and at what point I can seek treatment. Don't want it getting so bad that treatment options become limited. I'm learning a lot by reading the forum here. You all have a lot of experience and information. :)
~Dawn
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12/28/2011 02:28
flojo
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12/28/2011 02:28
flojo
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Re: New here
My right hand was at about the same stage as you describe yours but a little more contracture. I had NA then about 4 months later had RT. I waited that long because of my personal schedule. I could have had RT first, but decided to have NA first. RT stopped the progression for me. I have had no new nodules in the irradiated area. Some nodules developed outside the irradiated area, but so far they are not causing contracture but existing cords cause some contracture.
I am going for another consultation at Loma Linda University Medical Center on my left hand with a radiologist/oncologist on January 9th about possible RT. I don't think it is time for RT yet comparing to how my right hand progressed, but we'll see if he finds more nodules than I do. I will ask him if he has any knowledge about doctors in your area who may do RT and let you know. This is a different doctor from the one who did RT on my right hand. He is closer and I am impressed with his research and knowledge about Dupuytren's and RT for Dupuytren's.
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12/28/2011 02:38
pia2some
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12/28/2011 02:38
pia2some
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Re: New here
From all that I read here, RT sounds like it does help a lot of people. That's great that it stopped the progression on your hand. I can't find anyone who does RT around here. The doctor I'm seeing next month is supposed to be very good with DC. He did the clinical trials on Xiaflex. I'm not sure how I feel about that drug as of now. Hopefully, the doctor will be knowledgeable on various treatment options.
I'm also having a lot of pain in my right hand. My mom keeps saying how odd that is because she never had pain. I'm diabetic and peripheral neuropathy in my feet. I just wonder if being diabetic might make my hands more sensitive than the average person. There are days when it hurts to even hold the steering wheel.
Has anyone else experienced a lot of pain? If so, did anything help?
~Dawn
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12/28/2011 07:43
Christl 
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12/28/2011 07:43
Christl
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Re: New here
Hello Pia,
I just came down, or better realized I have DC and LD in June, went to Germany in September and December for RT in my hands. Seems my feet still have to wait. Before I can honestly say my hands were hurting, now the pain is still there, but not like before. It's some dull pain. Before RT I thought my hands were invaded by aliens. I can also now put my hand flat on the table again. Hopefully I will have stopped the progression, that is what RT is for.
I read you have pain in your hands as well. Get cycling gloves to drive your car, I did that. Also get some foam rollers, the ones you get at Home Depot to insulate your pipes. Wrap those around your knifes when you have to cut something, or wrap them just around anything you need to hold. It helped me a lot. I also use cycling gloves to vaccum, etc. Everywhere I go I take those foam rollers and gloves with me.
Good Luck.
Christl
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12/28/2011 07:57
LubaM.
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12/28/2011 07:57
LubaM.
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Re: New here
pia2some:
From all that I read here, RT sounds like it does help a lot of people. That's great that it stopped the progression on your hand. I can't find anyone who does RT around here. The doctor I'm seeing next month is supposed to be very good with DC. He did the clinical trials on Xiaflex. I'm not sure how I feel about that drug as of now. Hopefully, the doctor will be knowledgeable on various treatment options.
I'm also having a lot of pain in my right hand. My mom keeps saying how odd that is because she never had pain. I'm diabetic and peripheral neuropathy in my feet. I just wonder if being diabetic might make my hands more sensitive than the average person. There are days when it hurts to even hold the steering wheel.
Has anyone else experienced a lot of pain? If so, did anything help?
~Dawn
Dawn,
Hopefully the doctor you are seeing in January will help you decide which treatment to use. As you probably know because of all your family members involved, this is such a weird disease.... so different from one person to the next... even so different from you own left or right hand, so it is hard to give advice.
Like Flojo, I also had RT in my left hand that stopped the progression of the disease in the radiated areas. New nodules have appeared, but they are definitely outside the areas that had the RT. It has been over two years since my RT.
I also had NA twice on the PIP joint of the small finger of the right hand. Unfortunately, both time the contracture returned within 6 to 9 months on that finger. Like you, I am not sure about Xiaflex treatment, for the moment. Maybe in the future I will consider it, since I am determined to not have surgery until I have tried everything else.
I have not experienced a lot of pain. The nodules on my right hand palm are sensitive, if I hit them against something or open a jar or bottle without being careful. I can describe it more like an annoying sensation rather than pain. I am an artist and after painting and holding brushes in my right hand for a few hours, sometimes the hand gets cramped and then its painful, but otherwise it is not bad.
Keep us posted... good luck.
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12/28/2011 16:13
callie
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12/28/2011 16:13
callie
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Re: New here
This is a question I have always wondered about. When is the right time for surgery? Is there a time when it is too late for surgery? My surgeon said there was a time when it is too late for surgery. My surgeon said about 40 degrees contracture was the optimum time for surgery (before the odds start going against surgery). Any thoughts?
".... since I am determined to not have surgery until I have tried everything else."
Edited 12/28/11 22:31
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