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.

Experience of Radiotherapy in Germany from the UK

After a great deal of research and visits to GPs I found Gary’s blog and the IDS website and Forum. I have ledderhose in both feet my father also had it and DD, but it never progressed. I chose after many many hours research on RT. Costs in the UK were estimated around £6k for two feet. Germany was £2k for two feet. I had read about Prof S in Hamburg and chose that as my route.

Firstly I emailed him. Great emails and he was responsive (after a wait as he was on holiday!) I sent pictures asked lots of questions and decided on a one day visit for a consultation. Being from the UK I thought this was sensible (although a long day) after reading some people saying not everyone gets treated. A flight was around £75 return from London to Hamburg, travel on the day just 6euro. A great meeting and he advised treatment would be suitable and the beginning of DD was starting in both hands, but advised to do nothing with them not worth treatment just yet.

My trip to Germany was booked shortly after, treatment required 5 working days. I booked in a school holiday so paid the price on flights but I wanted it done ASAP hopefully while the active stage was in progress. Flights from London this time were £160 (double normal) return. As I was keeping this to a treatment not holiday I wanted to be able to cook myself etc. I found an apartment in Niendorf (about 25 minutes train from the centre) this worked out at 360euro for 5 nights. I had a spacious apartment/room with a Bed living area and kitchen all in one, sounds a squash but was very spacious and well worth the money if you are happy with no service, ie no cleaning\bar\reception or shower gels etc. It was perfect for me. It was a very local area English wasn’t widely spoken but most had an understanding and I got by fine (I don’t speak any German).

My First day in the hospital in Hamburg was a little worrying. I got the trains and buses. Bus 292 at stop Foorthkamp stops just metres away from the clinic and the buses trains etc are so efficient, easy also such good value, I paid just 26 euro for a week’s pass any time within greater Hamburg.

When I arrived the girls on reception were very smiley and friendly and spoke Basic English, enough to get by. I was told Prof S was not in that day, I had an appointment booked but he couldn’t be in the clinic. I panicked a little and got worried that I had come all this way and thought he needed to be there for treatment etc. I asked the girls how they will know where to radiate etc as I thought the Prof had to do this. They couldn’t quite understand what i was asking but we got by.

I was then led to a waiting room and then taken to the stairs and told to go down where I can have treatment. This goes down to the (very hi tech looking) Lab. The oncologists there spoke good English. I asked if they knew what to do without the Prof, and he assured me that yes the Prof had left instructions and everything is photo based and the template etc was set. This made me feel a lot better. He really seemed to know what he was doing.

The treatment itself was simple, hop up on the bed and lie face down, position your feet on the rest, they move the bed and the machine electronically to line everything up. I couldn’t really see much as I was facing away and so couldn’t really see all of what was happening. He quickly felt for the lumps, although he had the picture on the screen of the machine, placed a shield over the foot with a template to allow the radiation through to the area of around 12cm. They tell you the radiation will begin, leave the room, a red light goes on, machine beeps and I counted 30 seconds then they rush back in and set up the next foot and repeat, pop your shoes on and you leave! It took literally 3-5 minutes. I felt nothing.

I did worry to begin with about the area to radiate etc but I think Prof S and his team are very experienced and work well together so know what they are doing. The next day I had my meeting and we spoke about everything. I questioned the area of radiation etc and as the previous man said he explained all was done now in a template form for each patient. All was good and I was so happy to speak to someone with such knowledge, in fact it was the first (and only so far) person I have spoken to face to face that knew more than I did about Ledderhose. Such a relief! The Prof is very knowledgeable and friendly and makes you feel at ease.

Treatment was repeated as above for another 4 days, Thursday i had a consultation to discuss everything and how the whole thing has gone, I was then handed all my notes and a letter about treatment received. Sheets were included to make notes on any further nodules on hands and feet.

It’s been just weeks after my first visit so I have no results to show or speak of. In fact currently my nodules are a little more painful and sensitive, this as I can see from the forum is quite normal and I hope it to die down in a couple weeks.

Overall I’m really glad I went to Hamburg, the hospital felt very equipped and modern, I have nothing to compare this too of course but I got a feeling they put a lot of time and money into the place. Technology seemed advanced, such as when you walk into the radiation room there is a big screen that pops up with your picture so it’s the right patient and then the two screens on the large radiation machine pop up with all your details and pictures of the feet, radiated area etc. I left and felt happy with my experience it didn’t really even feel like I was in hospital, everyone was so friendly the prof the team that treated me and even the girls on reception grew to recognise you and were so happy/polite etc.

Hopefully I will report back and in a few months and have some results to speak off.

Finally if anyone is interested the cost for all consultations via email and face to face and all treatment for the whole week was broken down for me and after the rate exchange it came on the credit card as £820, a lot better than I thought! This should be less next time as the initial “treatment plan” and some consultations won’t be needed.

For me the locations in UK I would still need to either drive 4 hours return trip or stay in a hotel so costs would have been a lot more. I must point out there are locations at a slightly cheaper rate but further from me. Also had it only been one foot/hand may have not been too bad to be treated in the UK

Radiotherapy for Ledderhose in the UK costs about £2000

Ok so there are several things that have happened today. I have heard back from 2 different Doctors in the UK who do treat Ledderhose disease with Radiotherapy in the UK. This is a good thing as it is nice to know that it can be treated here. Then I come on to the cost, one of them clearly specified that his prices were for 10 treatments over 2 months and so I am going to assume that the other guys price is also for the same thing, these prices were £2000 and £1750, so quite expensive.

I am not sure yet whether this is the best option, certainly with those prices when I know that there are more experienced people working on it in Germany which should hopefully only charge £500 and you can make a holiday of it, though I have heard that this might be per treatment and so with travel costs it will be quite a lot, meaning if that £1750, which is fairly local, is for both treatments then we might have to go with that, only problem is money.-- Note that it is £500 per treatment in Germany and £1750 for both weeks in the UK.

Still at least these 2 guys in the UK have got back to me pretty quick, one has even offered to do a free consultation and so I am going to see him on 25th April at his clinic to see if he thinks that I am suitable for the procedure. It will be nice to go and see someone who does this treatment and hopefully get some more information and who knows maybe by then my wife and family will have completed their run and raised millions of pounds.

In other news there are a couple of new names on the forum (one called JoNN who I think I might know) and a new story has also been posted, it is great to see that the forum is reaching more people and hopefully we can get a little community going who will be asking questions and hopefully as helpful as those on the Dupuytren's online forum (which I think may sometimes be harder to find as not everyone knows that Ledderhose is related to Dupuytren's so they might dismiss it).

Still it seems like this poor guy has had it come on quite quick and in all likelihood in response to some kind of trauma. He has had a steroid injection but in the wrong place and is currently getting some relief from orthotics which is good to hear. I wish this guy well and hope that his treatments go well. Of course in my usual style I will of course ask this new member if they are willing to share information on here so that it may help any future visiters. I do hopefully have a few more that people are working on it at the moment but I don't like to be pushy as afterall they don't have to do it and they have no incentive, well other than helping others, to motivate them to do the interviews.

Remember if there is a particular kind of post that you enjoy you can now vote (voting closed) on the right hand side and if this proves to be conclusive then I might try to focus my results towards the more popular subjects. You are also able to donate towards this blog, my treatment (which may cost £2000) and the British Dupuytren's Society by hitting the donate button which is also on the right hand side. In fact I know that I have had in the region of 700 unique vistors to this blog, so if every single one just donates £3 that is enough for radiotherapy in the UK. Anyway I am not going to be pushy about that becuase the chances are the a lot of the people reading this blog are in the same position as me and they need the money for their treatment as much as I need it for mine.

To keep up to date with how everything is going with they stay tuned (and please like) the facebook group Gary's Feet (now called Ledderhose and plantar fibroma support group) and also make sure to join the plantar fibroma group as well.

The so called specialist appointment!

So today was the day of the specialists appointment with the NHS to see what they thought. Well it was quite clear that this lump was getting bigger and they seemed to understand that the pain was getting worse and that they only thing that they could offer me was surgery and surgery was all that they could offer.

Needless to say I made it quite clear that for me surgery on my plantar fibroma is not an option, at least not untl I have exhausted many more options. I then explained to him what the options were, they are radiotherapy and collagenase injections. He said that both he and the main man were unaware of anyone doing it in the area and that it was still considered experimental. In fact I can say for sure that both my wife and I knew more about this than they did and they are supposed to be the specialists. Then again what does that mean? I was also in contact again with Henry Orton from the British Dupuytren's society where he handed out some of the leaflets I have available on the resources page. Here is a little quote from the e-mail that he sent me:

"Interestingly of about 100 chiropodists or podiatrists in the audience, when I asked, only about half a dozen had heard of or encountered Ledderhose (Plantar Fibromatosis)..."


So as you can see from the above just because someone knows feet they do not know this rare and frustrating disease. What the appointment today showed me was that I am now my own specialist and I am having to make decisions that are going to cost money and influence my health, potentially for the rest of my life based on the research that I have done, what the British Dupuytren's society share with me and what I hear about on the awesome forum - Dupuytren-Online. I am looking into radiotherapy both here in the Uk and in Germany so that I can compare total cost for both, going on what I have been told Germany is £500 plus about £200 for flights and £300 for somewhere to stay and probably another £100 on food and other expenses. The UK, I have been told, is £2000, which depending on location will either include travels costs to get there each day which will likely cost in excess of £50 or again somewhere to stay for the week and food if it is too far away to stay at home. You do the maths!

So I am left hunting radiotherapy, I am left still in pain (though I do have co-codamol now which knocks me out so is only good for home use but seems to help a bit with the pain), I am left trying to raise money and awareness so that we can tackle this disease, so that other people in the future have better guidance and treatment with this disease.

Actually I would like to correct the above as there are so many people, most of all my wife, who are supporting me so much.... So we are left hunting radiotherapy, we are left coping with the pain, we are left trying to raise money and awareness so that we can tackle this disease, so that other people in the future have better guidance and treatment with this disease.

To use the phrase I heard I think from Rare disease day, or it was at least something similar, "together we stand strong".