Friday, 30 March 2012

Dupuytren's radiotherapy patient interview - Horus

This time I have to say thank you to horus for providing the information below. I am very grateful for everyone answering the questions and adding to the content of this blog and hopefully helping others (myself included).

1) Do you have Ledderhose Disease, Dupuytren’s disease or both?

I have Dupuytren's only and in my right hand, I am 34 y.o.

2) Do you have a family history of the disease? If yes how prevalent is it?

No. Nodules started to appear 3 months after wrist trauma (motocross accident).

Me: I think this is very interseting as this is the first case, at least of people that I have spoken to, where there has been a clear case of trauma before the onset of these annoying disease. I guess that with most people, myself included, if trauma is the initiating factor it is much more subtle than what was experienced by Horus.

3) How long have you been symptomatic?

November/December 2010 first nodule appeared (3 months after wrist trauma). By March 2011 I had 4 nodules and my index finger started to contract. Nodule growth was very fast. End of August 2011 I had my first 5day radiation therapy session.

Me: I am wondering if the swift progression of the disease in this case has anything to do with the severity of the trauma or if it is due to the individuals predisposition to developing the disease.

4) What treatments have you received?

Radiation therapy in the form of - 3gy daily e-beam radiation for 5 days repeated after 3 months. each e-beam lasting about 45-50 second. Total of 30 gy.

5) How successful were these treatments?

During the first 3 month period after treatment I haven't noticed any change in appearance of nodules. They didn't soften or recess. However I noticed that the contraction progression (which was rather extreme in my case) slowed down greatly.

Also before the radiation when I applied prolonged pressure to the nodules (by holding handlebars and still riding motocross - I didn't quit after the accident ) they did hurt a bit. After the radiation applying pressrure didn't cause pain any more. The nodules didnt increase in size after first radiation treatment.

After second treatment:

Nodules didn't change/recess, but they stopped growing. I feel currently a bit more ease in my index finger tension. I can bend it much further (outwards from the hand) than before. My hand stopped sweating as well. The area of the skin that was radiated looks different - kind of very dry skin look and feel. I had to stop wearing my wedding ring as it irritates the skin now and caused painfull redness 'watery' blisters to appear.

6) You said you had radiation treatment, what was this experience like?

3gy daily e-beam radiation for 5 days repeated after 3 months

I was given a choice of e-beam or radiation. As I didn’t know the difference between those two I was explained the difference: radiation is older technology, they are not able to control the depth of the radiation and radiation its strongest on the surface of the skin and slowly diminishes as it penetrates the tissue. With e-beam they can target the exact depth and power of radiation. Moreover it wont go deeper then it is intended (bones). It was a bit more costly treatment, but since I had insurance I didn't care and went for the e-beam. I had N1 stage.

After two days I had a metal "mould" made to define radiation area. The following week I started my first session. Over the week I had 5 treatments, each e-beam lasting about 45-50 second (total time spent each day in clinic about 10 minutes) 5 x 3gy dose. Overall there wasn’t anything unpleasant about it. The staff were extremely friendly and helpful. After 3rd day I experienced hyperactivity for a few days where I had hard time falling asleep or didn’t sleep at all. When I consulted the doctor, he said that it shouldn’t be from radiation. I believe it could have been from e-beam because I didn't eat/drink or do anything that would cause it.

1500EUR was the total treatment costs and this includes lead mould and 2 cycles of 5 days ebeam radiation - although I had mine covered by insurance.

7) Are you currently satisfied with the treatment that you have received?

Very. Although in my case there was no recession of nodules. What matters for me is that after 4 months I see no growth or contraction progression. The contraction in my index finger eased as well.

More of my thoughts:

Some very good and in depth answers from Horus which is much appreciated. As I said in the post it is interesting that there seems to be a clear trauma starting point in this persons case and quite severe trauma at that. I am curious to know whether people think this would have been successul if it had been in a Ledderhose patient. I say this because there is no change in the nodules if I have something done I would like to see change as I fear that it is pressure on the lump / caused by the lump on nerves etc that is causing the most severe pain that I suffer from.

Thanks again Horus.