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One year out from RE-RT
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10/31/19 01:15
Lee12 
10/31/19 01:15
Lee12 
One year out from RE-RT

Just thought I'd update here. Quick background-first nodule appeared after an 8 month stint of frozen shoulder and no family connection going back 2 generations. The first nodule multiplied quickly into 3 on the left and a couple on the right. Had the typical RT sessions of 5 plus 5 more 12 weeks later. 6 months later returned for progression out of field in the hands and added arches into the mess as well. One full year from there I returned for another consult and RO agreed to repeat the original areas because of progression. At this point there had been some favorable results so we knew it could possibly work. At that point I had 7 sessions of alternating days. Most parts of my hands got the extra RT. So fast forward one more full year and Im finding it quite unlikely that we have success. I HAVE had a reduction in the constant burning and tingling just in the past few weeks-so Im happy about that. But the damn thing just keeps going. Super tight and really achy all the time.
So I absolutely do not regret re trying radiation (in Canada- no specialist care for years! BUT we have RT covered!) but for anyone who wants to check out my Dups story history, I'm under Lee12. Good luck to all! (bottom 20 % eh? blah)

Edited 10/31/19 01:16

10/31/19 09:22
spanishbuddha 

Administrator

10/31/19 09:22
spanishbuddha 

Administrator

Re: One year out from RE-RT

Lee12:
Just thought I'd update here. Quick background-first nodule appeared after an 8 month stint of frozen shoulder and no family connection going back 2 generations. The first nodule multiplied quickly into 3 on the left and a couple on the right. Had the typical RT sessions of 5 plus 5 more 12 weeks later. 6 months later returned for progression out of field in the hands and added arches into the mess as well. One full year from there I returned for another consult and RO agreed to repeat the original areas because of progression. At this point there had been some favorable results so we knew it could possibly work. At that point I had 7 sessions of alternating days. Most parts of my hands got the extra RT. So fast forward one more full year and Im finding it quite unlikely that we have success. I HAVE had a reduction in the constant burning and tingling just in the past few weeks-so Im happy about that. But the damn thing just keeps going. Super tight and really achy all the time.
So I absolutely do not regret re trying radiation (in Canada- no specialist care for years! BUT we have RT covered!) but for anyone who wants to check out my Dups story history, I'm under Lee12. Good luck to all! (bottom 20 % eh? blah)
Thanks for the update. So that’s about a year since the re-RT and you have ongoing progression. You say tightness, itchy, but what about new nodules, cords, or contracture? The burning you got under mostly under control with cbd, oral and oil but its still a bother? Id like to say hang in there, could still have further improvement or stabilisation. At one point in your story we questioned whether you had DD. Can you share a pic of your hands.

10/31/19 23:51
Lee12 
10/31/19 23:51
Lee12 
Re: One year out from RE-RT

Hello there! Thanks for the reply Spanish Budda! -you said at one point we questioned DD? Don't think so-positive diagnosis since first nodule. Damn wish it were wrong! lol CBD helped and still helps with the arches and feet. Feet doing ok-main issue not the nodules (a row in each arch) but the facia itself. Really tight and will burn if I over do it. A drag but tolerable. The CBD products have done nothing for hands. Actually, nothing besides frozen water bottles, has worked for hands and Ive done it all. Since the last 7 alternating days of RT, the burning and tingling continued right up until the 10 month mark and then slowly dissipated. So far so good and hopeful there! But I had new nodules at the base of both thumbs treated at the last session and they have continued to grow along with cords going right up each thumb and in the web space.

Overall, the progression since the last sessions include constant ache in palms and thumb areas and tightness continues to increase. Hands are cupping although I can still press them flat with a push. Most of my fingers are tight and look like they have cords, in particular the pinkies and the middle fingers. As time goes on the middle ones look totally pickled. Weird. Had an odd experience with the RO in that when I questioned whether she would re- treat the pinkie and the middle finger on the left hand, she made me choose which one I wanted to treat. (??) Crap-like Sophies choice. They both needed it. Went with the pinkie because it seemed more likely statistically it would bend. Now the middle is getting worse. No contractures yet but with all of this happening within 2 years I hate to think of where its headed. I know that you have seen success at 18 months so Im still hanging on. Other than that, I have yet to see any specialists because there is a 17 month wait and that's with a contracture. Hanging out on my own.. Blah lol

I will attach pictures from my phone...wish me luck

Edited 11/01/19 00:05

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