Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
Thanks for being there to chat... it helps to know there are others to talk with and learn from. With that said, I know you can't diagnose by photo, but i just took this photo now, a week after the first one I posted showing the "rope" down from middle finger. I attempted to get a 2nd opinion, the top folks in Portland appear to be plastic surgeons..., get boobs done at same time (. I would think a rheumatiolgist would be a better option, thoughts???
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
Yes I see the cords clearer now. Still some discolouration, possibly from bruising, could still be results from surgery even if it is two months, and if so that could still settle down. But a second opinion is always good, a plastic surgeon who has worked on DD with hands for sure. But he might want to do surgery; too early don't let him. Continue investigating if RT is available and an option for you, in case you do want it in the future if it is DD and the symptoms continue to progress or worsen.
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
newman:Australia Calling. Firstly your hand doesn't look too bad. I was diagnosed at 35 and it was some 15 yrs later that I unfortunately went down the surgery trail. It is worth while having the view of an oncologist . I have had Rt in both hands and feet. It should be remembered that low dose Radiotherapy works for nodules, which are in the active stage in the hands .(Dupuytren's) and not on the cords. See the Oncologist and monitor the situation with wait and see. Should you see that contraction is occurring you might consider wearing a night splint on the affected finger. With new products available like Otoform (2 pack silicone) and Orfit casting tape (polymer bandage activated in hot water and forms a ridged fibreglass like form) You can make a splint with the help of another person. Many people have Dupuytrens and never seek any treatment for the condition.
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
newman:
newman:Australia Calling. Firstly your hand doesn't look too bad. I was diagnosed at 35 and it was some 15 yrs later that I unfortunately went down the surgery trail. It is worth while having the view of an oncologist . I have had Rt in both hands and feet. It should be remembered that low dose Radiotherapy works for nodules, which are in the active stage in the hands .(Dupuytren's) and not on the cords. See the Oncologist and monitor the situation with wait and see. Should you see that contraction is occurring you might consider wearing a night splint on the affected finger. With new products available like Otoform (2 pack silicone) and Orfit casting tape (polymer bandage activated in hot water and forms a ridged fibreglass like form) You can make a splint with the help of another person. Many people have Dupuytrens and never seek any treatment for the condition.
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
callie:pamonheim,
Providence Cancer Center, Portland, OR
I don't have experience with RT. I was not a candidate. I still have many nodes in the palm area, as I use magnesium oil and occlusion to keep the nodes soft. And they haven't gotten bigger. I did have Xiafex injections which could be another treatment for you to consider. My surgery was a disaster and made iDD worse. XIAFLEX was with it. I still wear night splints Fixxglove and spring splints during day.
There's some info on you tube. Check it out it will explain the many proceedures and you'll see the results from the various stages shown.
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
Pamonheim:Thank you for your note Cherise, so sorry to hear about your DD, and experiences. I hope a successful treatment is found soon.
Warmest Wishes
Much success with your treatment pamonheim. This is such a unpredictable disease. I have found a lot of new videos on you tube and a conference 2010 in Miami. Also description on tissues developement how it causes the nodes and contraction. Very Educational. All worth a watch? There is many other reasons for the developement work related other than heritary. No one else had this in my family. Do you have any family members with DD OR LH ?
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
Hi Cherise,
Nobody in 3 generations, I'm slim and fit, no diabetes , no sugar, no nothing!
I'm copying and pasting from another Facebook post I wtote to explain what is happening with me, hope I don't bore you;). My fingers are tired of typing. Meeting with oncologist(s) today was... Fun! Turns out a friend Tom Wynne was at the oncology center waiting for me. Another, Tom Johnson was the doc I was scheduled to see. Both have done numerous DD RT with much success. If you are a Kaiser patient I can not recommend this group in Portland enough.
They spent a great deal of time putting me at ease, allowing me to go through the list of questions I pulled off DART this morning.
My case was much simpler than most as my DD appeared just a week ago and I received a quick referral from my hand surgeon as this was most likely caused by my trigger finger and carpal tunnel surgery nine weeks ago. Kaiser got me in in for a consult within a week. After discussing all my questions, I opted for RT. there seemed to be no downside in my case. He marked the area, then made a cast like impression of my hand which took about 10 minutes. I'm set for my first RT on Thursday August 27, I will then go Friday, and the following Monday through Friday for a total of 7 sessions.
I asked if they would also check my feet as I was so scared and paranoid as DD came on so suddenly. I can't say how kind and accommodating they were to me.
I'm not sure if this is where I should post costs and fees, but if someone will let me know I'll gladly do so.
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. I would think a rheumatiolgist would be a better option, thoughts???
