I would appreciate any contact information you can provide. I have been unable to reach anyone who speaks English at the Canadian clinics, and have had limited success with emails to Professor Seegenschmiedt and Christiane Kerstan.

My understanding is that radio therapy has been tested using two sets of exposures over a 8 week period, and also with one set over a 2 week period with 2/3 the total dosage of the 8 week approach, and with equivalent results in terms of halting disease progression.

What was your schedule for treatment and was the other approach mentioned or provided as an altermative?

Bruce

Diary Part 2: Treatment 1B: 9th – 13th January 2006

The second and final set of 5 day’s radiation therapy began on Monday 9th January 2006 in Essen. Again, there was a daily dose for 3 minutes. Again, the German medical staff were extremely punctual, pleasant and efficient.

I was asked on the 3rd day if there was any pain, as sometimes patients report this during the second batch of treatment. I, however, had no pain.

No pain until a slight burning sensation after about 2 weeks (21st January 2006). The hand has been a little redder and drier in the palm over the last few days. Today the redness and slight burning are occurring around the remaining nodule near the base of the little finger. Over the weekend this has got a little more painful, the area red and quite hot to touch. Wolfgang says that this has been reported occasionally.

This second set of treatments definitely has more physical effects than the first. The skin seems quite a bit roughter, very dry skin over half of the palm, aches more (26th January 2006).

29th January 2006: A red mark has appeared in the palm exactly the same shape as the template used to shield the rest of the hand during irradiation. Occassional burning sensation. I’m now applying hand-cream so dryness is negligable.

3rd January 2006: First blister came. About 1cm square. It was not very deep. After picking off there is new red skin underneath.

6th January 2006: Second blister came. Same size, etc as first. Red mark of template is still visible but only slightly. Area is quite dry. I regularly apply a little bit of moisturiser. No pain. Previous cord and nodules seem about the same.

12th February 2006: A few more blisters today. They were easily pulled off. There were 3 about the size of a Euro coin. One along the palm crease, one where the little finger joins the palm, and the other half-way between the two. The invoice also arrived today – 402 euros for everything – consultations (including Prof Seegenshmidt ringing me at home), 10 radiation therapies, follow-up consulation.

15th February 2006: The red mark where the template was has now disappeared completely. There are a few slight dry skin patches that are flaking today.
3 Month Checkup – 26th April 2006
Visited Essen for a follow-up appointment with Prof. Seegenschmidt. He confirmed everything had gone well – the DC has been halted and the symptons somewhat reversed. The cord is now much flatter, the small pit that had formed has now gone (since the cord has flattened quite a lot). The nodule is a little softer and no longer hurts.

I finished the second round of radiation on my feet last Friday. I was told that feet are more sensitve to the side effects than hands. So far no problems at all. My hands didn't start to get red until a couple weeks after I finished so I'll just wait and see. Walking is so much more comfortable now. I walk 3-4 mile 3-4 times a week so thats a big deal. I used to hike more frequently as well but haven't for the last 3 years or so but I'm going to Alaska this May with family and will be hiking there. I'm going to be fitted for new hiking boots next month so I have a few weeks to break them in properly.

It's been 6 months since I finished with my hands and there have been no problems and no progression. Before radiation it was progressing very rapidly. I went from nothing to multiple nodules on both hands and both feet with and early cord forming , with difficulty with pain from any pressure on my right palm in probably 18- 20 months.

Colleen

Hi Nigel et al-and thanks for great diary of your treatment in Essen-I too have found the treatment there to be first class.I return march 24th for my second 5 sesions of radiotherapy-and it looks from your posting that I`d better take my hand cream.Did you try aloevera or vitamin E?I had virtually no side effects after the first 5 treatments except for slightly drier skin which I doused with Vit E ,Aloe Vera and Zinc and Castor Oil--That seemed to work well.The treatment sems to be effective with the lumps reduced in size and the cords softened-but I`ll wait for Prof Seegenschmiedt`s assessment.Also,I agree with you on the good value of such a proven treatment at 400 euro`s.I tried for a referall from my UK GP -but he said it wasn`t possible-so like you I`ve paid for the treatment myself-it has been a lot cheaper than the 60 or so acupuncture treatments I tried before discovering radiotherapy.By the way have you been getting symptoms of Frozen Shoulder-mine started a couple pf months ago in my right shoulder?
Rambling a little here-do you think we could get any Radiologists interested in offering Radiotherapy as a treatment for Dups/Lederhosen in the UK?
Phil

Nigel, we are actually investing quite an amount of (unpaid) time into Dupuytren e.V. and your acknowledgement is very welcome! Thank you. Regarding radiotherapy in the UK: it might be, probably is available but nobody knows where. Colleen (Issleib) succeeded in the US in finding a radiotherapist nearby while everybody believed that there won't be any in the US. If the same magic works in the UK you might try research hospitals, e.g. associated with a university, or major hospitals that offer radiology. Or you might try the vendor of the Essen equipment. They ought to know where they sold it to in the UK. At least a chance!

I know that you had your treatment already but maybe this helps someone else to dig into it and communicate findings to us. When we started our web site we had no one in Germany offering NA, now we can list 8 NA clinics in Germany, more than in the US. I like this forum.

Wolfgang

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Hi Phil
I've not tried VitE or Aloe Vera, etc. The Urea hand cream seems fine. I think there are certain parts of the day where I have to accept my palm will have some dry skin but it's a small price to pay for the brilliant treatment of Prof Seegenschmidt. This treatment really should be available in the UK. If I didn't have the internet I would never have found out about it, which is sad. It is only because of people such as Wolfgang that this forum is available now. Bless you Wolfgang. By the way, did you notice the machine they use in Essen is made in England. Seems ironic that the treatment isn't available in England. I don't know how to get any medical people interested - I've shown my GP but he doesn't seem that interested. I've not got any frozen shoulder, etc. I do have some back-ache but I put that down to a recent house move and new bed.
Cheers
Nigel

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