Finished the second and last course of treatments at Duke Cancer Center last Friday. The staff there are great.

Wait times after checking in were typically less than five minutes. The machine (Linear Accelerator) was always warmed up and ready to go when I got there. I takes the techs (wonderful young people, I will miss seeing them every day) 2 or 3 minutes to get everything perfectly lined up.

Staff leaves the room, then 1 minute later the machine buzzes and shoots electrons for 20 seconds. Staff returns 1 minute later, and I'm done.

Cost was $20,405; BCBS covered all but $1500 after meeting the deductible. My BCBS policy is in-network for Duke this year, however, Obamacare is cancelling that policy and will not be offering any policies that include Duke starting in January, so I will no longer be able to use Duke. Thank God that they were able to squeeze me in before the end of the year.

I am told that the success rate (defined as stopping the progression of the disease) is 90% using the German (Prof. S) Protocol at Duke with Dr. Larrier. I was also quoted the same rate at Novant Health, (Dr. Stieber,) who uses the 7 treatment course.

Both Dr. Stieber and Dr. Larrier have met and are proponents of Prof Seegenschmiedt. They are also both extremely sharp and humorous. Good people.

Radiation courses were M-F the week of Sept 17, then M-F the week of Nov 12.

I am confident that this was the correct decision in my particular case. My only regret is that the RT did not happen sooner. I first noticed symptoms in July, and currently have approx 5 degrees of contracture in my middle finger and 2 degrees or so in the ring finger. That's fairly aggressive progression for 4 months. Apparently RT is most effective in early stages and during active growth.

So now I have a year or so to determine effectiveness. Meanwhile it's back to life as normal.

What a roller coaster it's been. From the initial misdiagnosis of trigger finger, to being told that there is no cure so just wait and see, to wait till contracture is so bad that I won't be able to function normally or do the things that I need or want to do, so that I can have risky surgery with a high recurrence rate.

But then finding the International Dupuytren Society and there finding education, resources, shared experiences, support, and hope. And finally finding treatment and confidence that this chapter of my life is over. Oh what dark days are behind me! Especially that first week. Yikes.

Thanks to the staff and all the members of this forum, and especially to those who wrote up their experiences, (of which Alastair's is particularly helpful at http://www.pushandpullman.com/dupuytrensradiotherapy.html ,) and of course special thanks to Christy for her support and for sharing her German adventure with me.

Thank you Dr. Stieber for your offer of treatment, and then finding Dr. Larrier for me.

Last but not least, thank you to Dr. Larrier and the staff at Duke Cancer Center.

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Note warm wet towel.


Comparison of hands, taken an hour or so after last treatment.


Thanks for reading!
Jon

Thank you so much for sharing, wonderful to know that the treatments available. You have helped many people.

Oops, meant to say sb.