for Dupuytrenís Disease in Essen
by Nigel, January
Starting Ocotber 2005 I had radiation therapy at Alfried Krupp hospital in Essen, Germany. Here is my story but before getting into details I would like to add that the staff at Alfred Krupp hospital, especially Prof. Seegenschmidt and Frau Kerstan (now Goebels), were brilliant.
Treatment 1A: 10th – 15th October 2005
I had DP in my left hand. A band running from the palm to the base of the little finger. The band had produced a small pit at the palm crease. The band felt about 0.8cm wide in the main palm. There were a couple of small nodules between the crease and base of the little finger.
Treatment began on Monday 10th October 2005 for 5 days. At 1pm each day most of my palm and the base of the fingers of my left hand were given radiotherapy for 3 minutes 6 seconds. I was seated in a small room with a lead shield around the rest of my left hand and over my waist/groin area. I did not feel any strange sensation during the irradiation.
After completing treatment my hand felt completely normal for about 10 days. My mum said the swelling of the band was noticably smaller after only 2 days from completing the treatment. After 10 days I felt some occassional tension in my left hand around the location of the band. After about 14 days the main creases in the palm were quite red. There was no pain. I assumed this was the dead cells being broken down and being removed from the hand by my blood stream. The two nodules between the palm crease and little finger became easier to see, possibly because the swelling caused by the active ‘nasty’ cells has now stopped. From day 16 (ie 16 days after the last RT dose) my hand was noticably better – the pressure just suddenly seemed to release and I had the sensation of full flexibility returned – I could twist the hand and stretch it and not feel any pulling/restriction. That area of the palm now felt more like your skin does when a scab is on it – you feel there is something a bit alien there but it feels more like an irritant than anything restrictive.
It is now 5 weeks after treatment commenced. There’s no pain but still a bump. The two nodules may be growing. The main lump still seems stable. The palm seems slightly darker than the other hand, the palm creases also redder. There is no dry skin.
After 6 weeks a couple of small skin blisters appeared along the skin creases. They flaked off after a day or two. There is now some dryness of the skin – looks like chalk in the creases of the palm. There is no irritation. The skin does not appear dry when waking in the morning. I have not bothered using any hand lotion, etc.
After 10 weeks there is very little dry skin. The cord is still there but much softer and flatter than before. Only the nodule nearest the little finger has not been reduced – on the contrary, it still seems to be growing.
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.
1 Year Checkup – 30th January 2007
10am on Tuesday 30th January 2007. No progression of the disease at all. The thin band that had extended from my left palm into my left little finger has gone. The main lump in the left palm has flattened and turned fairly soft. There are two small lumps where the two nodules were at the base of digits 4 and 5. Neither has progressed. The original pit has flattened also. The pattern of skin in the palm around where the pit was has now probably altered permanently. The only side effect is more dry skin in my left palm than my right. Prof Seegenschmidt recommends handcream with 4% urea (helps absorption) to be applied before going to bed each evening. The brand I got (in Esses) was Excipial.
Update August 2008
My hand is still healed, the DP has not progressed at all. Prof Seegenschmidt did detect it in my right hand also but, since the radiation therapy, there has been no progression at all.