State of the hands

[watervole]

It's now ten months since I had the radiotherapy.  My hands look exactly the same.

This is good.  The condition has not progressed; I've not lost any more flexion in my fingers.  The lumps haven't vanished, but then I wasn't particularly expecting them to.  (In some cases, the disease is reversed, but it's not that common)

I've had no side effects at all, not even dry skin.  (I don't know if religious use of moisturiser during the treatment helped with regard to this - I followed the instructions the radiotherapy team gave me to the letter).

I've been getting a number of queries from people asking how I've done since the radiation therapy, so I'm starting a new LJ community, dupuytrens_uk for people to talk about what is available in different parts of the country.

On other fronts, my mother is considering getting treatment, but at her age, she may not need to.  Late onset Dupuytren's does not always progress very far and she's pretty elderly now.   Radiotherapy would be possible at the stage she is at, and she's glad that there is an alternative to surgery if she wants it - she's had too much surgery for other conditions and would not want to go through all that again.

Comments

[vjezkova.livejournal.com]

I am really glad to hear the good news!

[sophiedb.livejournal.com]

Good to hear :)

What sort of radiotherapy did you have?

[watervole.livejournal.com]

See http://www.dupuytren-online.info/radiation_therapy.html for details of the treatment. This is the site I used when originally persuading the radiotherapist that this was a well-accepted form of treatment for Dupuytren's.

Dupuytren's

[(Anonymous)]

Good for you being so persistent about radiation therapy! I was just diagnosed two months ago (have a lump and cord in one hand) and trying to radiation therapy in the US is difficult...

I just saw an excellent doctor in Boise, Idaho (he has it himself!) and had steroid injections and will be returning to Boise for radiation therapy. The doctors in Seattle, where I live, wouldn't even discuss it with me. I thought I'd have to go to Germany, until I found the doctor in Boise. Megan L, Bellevue, Washington

Re: Dupuytren's

[watervole.livejournal.com]

Hi,

Although I set up dupuytrens_uk primarily for people in the UK, you might like to write about your experiences there. I only set it up recently, so there's very little posted.

Would you like to post about your experiences there? I'm trying to encourage people to all post in one area as new people don't see other people's comments on my personal journal.

I'd like to read more about steroid injections.

A quick read of http://www.dupuytren-online.info/dupuytren_steroids.html suggests that they work, but the effect often only lasts a few years.