International Dupuytren's Symposium - Day 2 - afternoon

Radiotherapy:

Prof S:

Looking at the whole body, look for feet, shoulder, privates, and hands not each thing as an individual item.

Radiotherapy can prevent progression in non-cancerous tumours and there are many different fibroma conditions. The radiotherapy impacts both proliferation and inflammation and this is how it can work on DD / LD. So radiotherapy can impact the cells as they are proliferating so quickly that the radiotherapy causes DNA damage that causes them to go into an apoptotic state rather than continuing to replicate.

TGF-B is very sensitive to radiotherapy and is known to be involved in the development of the cells from stem cells to postmitotic state PMF. This has been shown in science journals and cells basically are forced to skip the step in which they are proliferating and in which they cause DD.

Patients that are progressing, so therefore have active DD / LD are those that can be used to determine if patients should be treated. To be clear radiotherapy cannot be used in the latter stage of the disease, but can it be used post-surgery to prevent it entering the latter stages again. For the above to work we need to know what is progression so we can determine what is the right course of action. Increasing symptoms, cords, nodules itching etc are good signs.

If radiotherapy is used at an early stage it can delay or even stop progression. Published data shows that there are some responses to this in the different stages of DD and the later stages of DD should not be treated with radiotherapy but in the initial stages there is a good response to radiotherapy, especially in stage 1.

There have been several different techniques as to what is the best, and comparitive studies show they work but the favourite is 3x5gy done twice over 2 different weeks separated. Random between 2 schedules and controls

3 groups - 0 gy, 21gy (7 days in a row) or the now standard 30gy treatment.

No difference between electons on ortho-volt. There were no difference between the groups in terms of other factors.

20% of patients had a remission

53% were stable  in all RT patients.

Only 8% of patients in the 30gy group went on to have surgery..

Surgery is possible after RT with no extra complications. 12 week break is standard. Radiotherapy with lower doses does work if patients are concerned but it doesn’t work as well.

Radiotherapy used post op in patients with DD in PIP joint.

Ledderhose results skipped!!!! This was due to time constraints so I understand even if I am annoyed.

In cases of Ledderhose 80% of patients see reduce of symptoms and can be done post-operative and can be considered after multiple surgeries. There are several patients that have relapsed and in a different region they are happy to repeat, if there is a relapse in the same area then there can be a third week but going on beyond that is not great.

One key thing is that the dose is above 2gy, so 3gy x 5 or 5gy x 3 can work.

This was a very interesting talk and I knew most of it but it was great to hear the discussion between the surgeons and Prof S, his answers were mostly good.

Next was my talk, gulp.

Overall I think it went well and the basic results that I commented on were:

There is a very high number of female patients, in fact more so than in women and this could be real given the degree of deviation from the norm, however it could be a limitation of the survey, should take into account for the book how many patients have been self-diagnosed. In my experience there is a higher number of women, one doctor commented that many women who think they have nodules have hammertoe and many men who do not think they have Ledderhose in fact do have it. In hindsight I would argue that most of the patient participating in this survey are knowledgeable and most have Dupuytren’s so have probably been checked for Ledderhose, or at least should have been, so if the numbers are biased then it is because doctors are not checking up as they should.

The usual conditions are related.

Radiotherapy is the best treatment option as far as patients are concerned for Ledderhose. No other treatment option even comes close and no doctor even questioned this result. I got in my point about the lack of Ledderhose information and the lack of talks that even consider Ledderhose over the last 2 days...

After this point I did miss the next 2 posts in a post talk buzz but both Dr Bojaj and Anna both said well done on the way back to my seat which was nice.

Have to admit that despite nothing really being on the line for me my heart was pounding and I was a little nervous (though not much really) and I think this is because I wanted to do everyone proud, everyone who has taken part in the survey deserves me to put their point of view across. If anyone would like a copy of my powerpoint presentation then just ask, happy to provide. Certainly if you have Ledderhose then the graph on the treatment options is worth taking to any doctor you see that doesn’t approve of radiotherapy.

The next talk I have notes on is the one on Peyronie’s. To be fair this is probably a talk you can avoid watching, unless you like seeing surgery pictures and you can guess what they look like. Also mentioned the use of Collagenase on the treatment of this condition.

I am not sure what the last mini session is on but think it is mostly going to be 2 interactive sessions on research, first science research and then clinical research.

I will post this as an update now as I am unsure whether I will make many notes on the last session as I am not sure how relevant it will be to me, but I will do my best to give any input that I can and provide you with any output that I can.

International Dupuytren's Symposium - Day 1, morning

In Summary it was great to see so much interest and so much work going into these conditions, even if almost everything is focused on Dupuytren’s most of the work will have cross over with Ledderhose.

Note this is just an overview and I will try and go into more detail where possible.

The first session was really all about the different processes in different countries, mainly looking in USA, Germany and UK as this is where most of the patients are. There were some interesting points coming through on current trends and the increasing application of collagenase and gradual decrease in open surgery.

One point that interested me was that in the presentation Wolfgang gave it was clear that radiotherapy is actually a good treatment option for DD (as expected) in fact it was one of the top options. The next talk showed that patients, at least those that have had surgery, rank decreasing recurrence as their priority and I know this would probably be true for Ledderhose patient as well. Do these 2 observations combined mean that if you offered these patients the chance of radiotherapy at an early stage where recurrence would be low and their main other tissues such as side effects would be low surely they would take it?

The second session then moved onto a much more scientific point of view. Looking at the different markers in Dupuytren’s cells and how they can have an impact on the development and treatment of the conditions. I took a couple of main points from this:

1. There is a clinical trial on using anti-TNF to treat the early stage of Dupuytren’s.
2. I would like to follow up the above by contracting this person and seeing if they would be willing to expand the scope to include Ledderhose, certainly think we can get the patient numbers required.
3. There is lots of interesting research being done and lots of discussion happening, patients should take some heart from this.
4. DD cells can be problematic as they do not grow in normal culture environment in the same manner as other cells and this is an area which probably requires improvement and is being worked on.

There was lots of healthy debate in this session including:

1. How to best control experiments, age groups etc and later onset of DD in control group.
2. Does Estrogen play a role as some observed that this treatment increases odds - could this be linked to the later onset in women.
3. Should science be looking more into the aggressive condition, these are the patients that are then more likely to go on and need treatment.

I think the final point is again interesting from a radiotherapy point of view, in that it is in these patients where perhaps RT is worth a go sooner rather than later, especially in cases of DD where the hand can only be treated before contracture has not yet started. Imagine if we could come up with a marker, yes you have high risk of LD / DD and you are showing symptoms and RT helps (assuming a study shows that radiotherapy is a / the most beneficial treatment option for these patients).

Certainly a fascinating and enjoyable start and a lot to be learnt. Time to build contacts over lunch and looking forward to more this afternoon.

I already have 7 pages of typed notes and sorry for any typo's as I am writing this on the go, hopefully I will have some pictures up and about for the post covering this afternoons sessions.