Sunday, 18 March 2012

Interview with Ledderhose Radiotherapy patient 1

Interview with Luba from Dupuytren’s Society Forum:

LubaM is a member of the Dupuytren's society forum and agreed to share their experience with treatments for Ledderhose disease / Dupuytren's Disease. One of my reasons for picking this person out of all the people on this forum is due to the use of Radiotherapy. So lets see what they said...

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

I have both Ledderhose and Dupuytren’s disease.

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

My family has no history of these disease however one of my sister who is 8 years older than me does now have Dupuytren’s which started after mine.

3) How long have you been symptomatic? 

 I have had symptoms for about 10 years.

4) What treatments have you received? 

I have had radiotherapy on both my left foot and my right hand and have also received needle aponeurotomy (NA) two times in the PIP joint of the small finger of my right hand. Both times NA helped at first but the contracture did return within six months.

5) How successful were these treatments? 

As I said above the NA was successful in relieving my symptoms but they returned within six months.
Two and a half years later, the disease has not progressed in the areas treated with radiotherapy. The nodules on the foot are 90 percent gone, still there but much smaller. The tiny cord on index finger is also gone. Some of the remaining nodules on hand are much smaller. There is no more tightness, itching, burning feeling anywhere.

There is a couple of new nodules on the hand, but those are outside the treated area with RT. I believe the RT was successful for now, and that the Dupuytrens and Ledderhose are in remission, so far.

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

As far as my experience with Radiotherapy it was very positive. I had RT in November 2009 at Scripps Hospital in La Jolla, California with Dr. Tripuraneni. My RT was for two hard, marble size nodules on the bottom of my left foot and also at the same time for the palm of my left hand where I had multiple nodules, dimples and a very tiny cord running from the bottom of the index finger towards the MCP joint of that finger. On the hand there was no contracture.

Dr. Tripuraneni did ten treatments, one every day Monday to Friday for two consecutive weeks.

At the time of the RT I had lots of itching, burning sensation in foot and hand, a feeling that something was crawling and tightness across my hand. I knew those were signs of active disease (one of the criteria’s for successful RT).
For the radiation treatment I had 10 doses over a 2 week period, so 1 dose for 5 days and then the weekend and another 5 doses. I am unsure of how much this normally costs as I had it covered by my insurance.

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

Yes, with Radiotherapy.


So here is one patient at least that was happy with the radiation treatment that they received. I am hoping to get more and more patients to do this kind of thing, after all what kind of person draws conclusions from N=1? 

Thanks again to Luba for agreeing to answer my questions.