Wish all Radiation Vacation Travellers a good trip to Germany with a reminder from the International Dupuytren Meeting in 2010 in the Intercontinental Hotel ....
Keep Your Spirit Up ...
Yes we can ... overcome DD and LD, all the best, Larry
Sharon I timed the treatment and it was around 38 seconds... they took a picture of me doing it... this was near April 26,2012. I'm going for my second RT this month on Sept 17,2012.. it's been about 4.5 months. Dr S said it's still in the safe window of time. Has anyone else had a longer waiting period like me? Rich
switcombe:It's been 3 months since my first series of RT. This coming Tuesday I'm returning to Germany to have the second series. My left hand no longer bothers me in any way - no pain, no itching, etc. But my right hand seems to have developed a cord in my palm that wasn't there before, at least not as prominently. It's slightly painful. My nodules have hardened with no change in size. That's my assessment - it will be interesting to see what Prof. S. finds in the way of change for better or worse.
Still uncomfortable with the idea of radiation - did any of you count the seconds just to be sure the treatment wasn't too long?
i too finished my second round last week in Germany. My nodules are still there, they just seem a little "flatter" but i do feel a vey slight "tightness" at the base of my 4th finger, but no contraction. Lori good luck on your second round- hope everything turns out well. Nicholas
RichSF:Sharon I timed the treatment and it was around 38 seconds... they took a picture of me doing it... this was near April 26,2012. I'm going for my second RT this month on Sept 17,2012.. it's been about 4.5 months. Dr S said it's still in the safe window of time. Has anyone else had a longer waiting period like me?
I was 4 months between treatment.
I have not had any of the 'instant' successes reported so often here: softening or reduction of nodules, reduced pain, but now more than a year later my hand is settling down, it's quieter, less aches and pains and no progression. I do have signs of skin changes on the edge of the radiated treatment that may or may not be a hint of new nodules. There is some dry skin in winter that"s almost not worth mentioning. Prof S said on my annual review that it was too early to early to declare the treatment a success or failure. I'm quite pleased to have no progression and a flat hand. Maybe it would have stayed that way anyway, but Hamburg was a pleasant trip.
Just got back last night from Hamburg. The second series went well. I was less nervous about the radiation this time, though I did count the seconds. Prof. S. noted that my nodules had hardened into "coconuts" (scar tissue). Had an excellent time in Hamburg and even a day in Berlin. So far - no pain, no reddening of skin and hopefully no further progression of disease in the future!
Good to hear you got on well and got home safely. Thank you for your update - it is all very encouraging. You can be sure many of us were thinking of you on this trip. I wish you every success into the future!
Can you please advise. I am due a second round RT in a month's time. I have developed a new nodule in the RT area since the first round - which was two months ago. Did you indicate earlier that you has some development of a cord and some nodule hardening within the RT threated area since your May treatment? If so did Prof. S. think this was not unusual? I'm probably just being a bit over anxious...
Thank you very much again for sharing your experience.
Lanod, I think the nodule hardening is a normal outcome for the radiation treatment. In my case, at least, it indicates that the nodule is no longer active and growing. As far as a new nodule is concerned, I would think that this is why Prof. S. recommends a second series. I'm hopeful that my new cord development is arrested - but, of course, time will tell. Radiation is 90% effective for active disease. I wish you the best.
Hi After being diagnosed with DD in Dec 2011 and and given the usual medical suggestion to wait for my condition to get worse before i had treatment. I'm a fine artist and my hands are important to me so i went on line to find out more about this condition. After seeing a bunch of images of hands in the last progressive stages and becoming totally convinced that it was going to happen to me tomorrow i began to panic!! Then fortunately, I found this forum. What a relief!! Here is a place where i can discover other people (even royalty and presidents) that have it too and i can find out what my options are to manage this disease through the collective knowledge and suggestions of the people in this forum. So as a result of my research i saw that my condition is extremely mild and definitely in the early stages so I moved quickly and decided to get "zapped" with RT in Hamburg where the experience is the greatest and the cost appears to be economical. I went for my first session with Dr Seegenschmiedt in the end last April (2012) and everything went well. He's a hell of a nice guy and is extremely knowledgeable about the disease. His exam was thorough and encouraging and the treatment was painless. There has been no visible progression and my hands function without limitation (as they did when i first found out i had it). I almost decided not to return after my first round thinking that i may not need it but after careful thought, i decided to do the right thing and continue with the proper regime. So, after the long flight from San Francisco, here I am ready to get zapped again in beautiful "Zapburg" to finish the protocol. And unlike the 1st time where i just came to Germany and returned to the USA immediately, this time I'm staying a bit longer to enjoy my radiation vacation and go to Italy after my treatment. So if any of you are here as the same time as me, let me know i'm here till Sept 21, 2012 Much obliged RichSF
I'll be back in San Francisco in time for a One man Show of my work Opening on Oct 13 & 14
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