Thank you so much for your posts and so glad to follow your journey as I'm on the same one at the moment.

I was officially diagnosed 08/21, after GP suspected DD in early June when 1st finger tip sized nodule appeared suddenly.

The only warning was itching of left palm and carpel tunnel type symptoms in both hands - such as pins and needles, numbness while sleeping and terrible pain and stiffness in first and middle finger - Second very small nodule appeared at the end of July (I had itching with that too!)


I was sent for
x-ray (small arthritic changes)
Nerve Conduction Test - (a diagnosis of very early CPT can be corrected w/o surgery)
MRI - Palmar Fibroma ( early )

3 Doctors later I was finally diagnosed with early DD, nodules only.
The advice given - Let's all say it together now!!!
"Nothing can be done right now, so wait until contracture progresses to 30% but even then treatment options may not be effective long term"

I asked about Radiation and the Dr. said he did not agree with it. I had limited time with him but the feeling I got was he disagreed with the toxicity. He mentioned sending me somewhere for treatment and me getting cancer!

I'm in no way, shape or form a "wait and see" kind of person. My Anxiety will cause enough stress to kill me before my hand contracts 30%.
Plus, this is not a "painless" disease (like some internet sites say) or at least it's not for me.

After finding this, and other FaceB groups I want to explore RT. I've made an appointment on 08/27 for Radiation consultation.
I found Dr. Don Schwartz in Dallas Texas through this site. He also takes my insurance AND his office staff knew what I was talking about!

What questions should I ask the Oncologist (just writing that word makes me squirm)
What did the Dr. you see say about the toxicity of the dosage you would be given?

Thanks to all who respond. I'm grateful.


Ri
56 year old Female/ No family history known of

Edited 08/25/18 02:47

I had my left hand FF op in May to resolve a fully contracted little finger. A noodle and early signs of DD is evident on my righthand - not wanting to 'wait' the message from doctors here I have opted for RT and have had the first 5 treatments last week. I now wait until November when there is another 5 treatments. I do not have insurance and this is not supported by the NHS here in the UK and so I have paid for this treatment. I am hoping the RT will delay or stop the inevitable contractures etc.

No side effects following the first treatments of RT apart from a reduced bank balance!

My wife and I had our appointment with Dr. Larrier on Wednesday at Duke Cancer Center. Dr. Larrier and Dr. Hong her resident are both very encouraging and fun to talk to, as well as knowledgeable and experienced in treating Dupuytren's with radiation.

Dr. Larrier met with Dr. Seegenschmiedt when he was at Duke several years ago. She is also familiar with the International Dupuytren Society and said that she would be happy to be added to the list of doctors who treat DD (DC here) with Radiation Therapy. I will PM spanishbuddha our administrator with Dr. Larrier's contact info, in case he would like to include her in the list.

Dr. Larrier specializes in pediatric oncology, so I would assume that treating DD is somewhat of a relief, or maybe just a refreshing change from the everyday cataclysm of pediatric oncology.

Oddly enough they saw another patient with DD earlier in the day.

We arrived at Duke during the lunch rush, and traffic was just shy of gridlocked. Luckily I was able to navigate into the parking deck before my stress level became too high. I hate being late, and I was still not sure whether or not I'd be able to be helped at Duke, after the roller coaster of the previous weeks.

Intake was a smooth process, streamlined I suppose because I had Novant Health fax my info over to Duke when I was referred by Dr. Stieber. Apparently Dr. Stieber found Dr. Larrier by calling a friend at Wake Forest, who had heard of Dr. Larrier. I can't thank Dr. Stieber enough for going the extra mile for me, especially considering he was handing me off to another provider.

I had called all of the oncology departments in the greater Raleigh/Durham area, as suggested by the IDS, trying to find a Dr. who provides RT for DD, without luck, including the Duke Cancer Center. Dr. Larrier said that they have some new people in reception, and would send around an email to make sure the first point of contact people know that RT for DD is indeed something that they do at the Duke Cancer Center.

After intake we had a very short wait in the reception area before my name was called. As before, I was struck by the fact that I am there for a much less serious issue than the other people waiting there.

There were a few formalities of blood pressure checks etc., and we were ushered into a very nice exam room. The Duke Cancer Center is a beautiful facility and state of the art. There was someone playing the Grand Piano in the main lobby when I arrived. I forgot to check to see if it is a Steinway or not.

A nurse named Andrew then interviewed us, and shortly after he left, the resident, Dr. (call me Julian) Hong, came in and spent quite a bit of time explaining how their system works, about their team and Dr. Larrier, and gauging our level of knowledge about DD. They use the German protocol, 5 treatments, one a day for 5 days, of electrons (I forget the level now,) then 8 weeks off, then 5 more treatments.

He then sent in one of the Radiation Techs, who showed us his foot, which he had successfully treated with RT at Duke, years ago. Apparently his was the first use of RT for Ledderhose at Duke, and partly because of his insistence. He is an avid surfer and skate boarder, so it was important to him to have it treated by RT.

Dr. Larrier then came in, and she is a hoot, as well as quite obviously a genius. She went over every detail with us, and then was able to coordinate the mapping of my hand right then and there, by making a few phone calls around the hospital. This not only saved me a trip back to Durham, but might also have helped us financially, which I will explain in a minute.

With hand mapped and photographed, and all the paperwork ok'd, I was scheduled to start Radiation Therapy on Monday Sept. 17th. I couldn't be happier, especially after all the false starts and disappointments of the last several weeks.

As usual, I asked to meet with the finance department, because I need to be sure that Blue Cross will cover the majority of the cost of the treatments. The finance gal assured me that BCBS will cover part of the cost, but was unable to provide details, such as what the total cost is, how much of that BCBS would cover, and how much I would need to shell out.

She also informed us that BCBS is dropping my Duke Local plan from their offerings in 2019, so if my treatments had extended into 2019, I would not be covered. So it's great that Dr. Larrier and team are able to get in my 10 treatments before the end of the year.

Yet another reason why I'm glad that I did not procrastinate or take the original advice of my GP to "wait and see, it's incurable anyway."

My DD is quite aggressive, I have developed several nodules and at least 2 cords within 8 weeks, so I was uncomfortable (an understatement) with wait and see. My brother has had DD for 6 years, but his is slow, as far as I know.

Wednesday night I was talking with a very good friend of mine, who was surprised by my story, and showed me his...

Great seeing your story with pics so far. Thanks.

Round 1 Complete

We were able to complete round 1, consisting of 5 radiation treatments, the week after the hurricane hit. There was actually a tornado in Durham Monday morning, but the staff at Duke stuck it out and continued to treat everyone.

Unfortunately my 98 yr old mom took a turn for the worse during the hurricane, and we have had to move her to long term care in Wilmington, where she lives. It was very difficult as Wilmington was cut off from the rest of the world for quite a while. She was transported to New Hanover Regional Medical Center and back during the height of the flooding. Despite being only 14 miles from her apartment, the trip to NHRMC the trip took 5 hours in the ambulance.

My radiation treatments went extremely smooth, the team and everyone I have had contact with at Duke are extremely friendly and relaxed. The receptionist even validated my parking tickets lol.

I checked in after work in the afternoons, and waited for 5 minutes tops before one of my team members came out to escort me to the treatment room. The radiation machine is extremely impressive.

They had made a template for my hand, and taped the hand down to keep it in the correct position. They then leave the room and tell me to keep very still for 2 minutes. The machine warms up for 60 seconds, and then makes a loud buzzing noise for 20 seconds, during which time it is irradiating my hand. Then 40 seconds later the team comes back, and escorts me out.

The whole process, from check in to exit, takes about 10 minutes.

The worst part of the whole thing is fighting Durham traffic. But the treatments themselves are painless, and to my mind, the technology is super cool. I had lots of technical questions, which were all answered enthusiastically. These are very smart young people at Duke.

I met with Dr Larrier again on Wednesday before that day's treatment. She is fun to talk to, as well as being an expert in all things radiation.

I have had some additional contraction of my middle and ring fingers, but I am confident that the next course of radiation will stop the progression. The next round of 5 treatments are scheduled for the week of Nov 17.

So far I am extremely pleased with everything. Indeed, it was the highlight of that week, coming as it did on the heels of the hurricane and the issues concerning my mom. It was difficult and frustrating finding treatment, so for the process to go this smoothly after finding it has been a real godsend.

The financial department says that, other than my copays and deductible, my insurance will cover the cost of the treatments. I'm somewhat skeptical, but at least at this point I'm hearing good news.

I'll let you all know how it goes in November. Thanks to all of you who have been emailing and PM'ing me. I especially want to thank Christy for her support.

Mom at 98


Hand on Aug 9


Jon and Machine


Ready for Radiation


Hand on Oct 7


Thanks for reading!
-Jon