An Update on Me - 12 years post Radiotherapy

I wanted to give a detailed update on me and my Ledderhose and more around my lifestyle in general. 

For new visitors please read the following post to see my background.

In short my journey prior to successful treatment:

• Noticed lump in foot around 2009.
• Got sent for physio! And was rightly told that they could not help.
• Advised to wear supportive running trainers. Note I weighed around 18 stone, so at 5ft 9 this didn't help.
• 2011 started to become more painful. 
• Had Steroid injection and it helped for a few months then it came back angry.
• NHS Foot specialist advised that surgery would likely result in it coming back so not worth it except as a last resort. 
• I was working towards a PhD in Cancer research so delved into the science and started this blog. 
• Referred for and fitted with orthotics which helped a little as well as having diagnosis confirmed with an MRI. 
• Became super painful but told other than surgery, which is a last resort, there was nothing the NHS could do. 
• I started using a walking stick to get around and take some weight off of my foot. 
• My wife found radiotherapy with Dr Shaffer as an option. 
• I was treated in May / July 2012 and combined with moving away from the lab to a desk job I found myself recovering quickly.
• Throughout 2013 my foot continues to improve to the point where you wouldn't realise I had it. 

The Ledderhose:

So firstly the Ledderhose. In terms of pain I am still in a great place, I have very little if any pain from the Ledderhose disease. I can sometimes feel an ache around where the nodule is when I have been doing a lot of running but nothing prohibitive. Now you will notice that I said where the nodule is... In the last 6 months or so the nodule has grown again. So it was very small and dormant for the best part of 9-10 years and in this last year it has grown a little. It might even be bigger than it was before however, even with my running, it is not causing pain above 1/10 let alone the 9/10 I was getting on every step before.

In terms of my journey since the start of 2015 I collected a whole bunch of patient data and presented the results at the Dupuytren's Symposium in 2015. That was a great experience, I got to meet so many specialists and live blogged about the conditions (which was surprisingly popular!). 

My Diet:

Something that can be very divisive but I am convinced that a proper human diet is high meat, low carb and that this isn't even bad for the environment or the animals. This might sound crazy but I, and many others, have done the research and there is just so much money in food and keeping people sick that it is had to impossible for the required research to disprove it to take place. You air these views and are seen, at best as being eccentric and at worst as a conspiracy theorist. Speaking from my own experience, and from many others I have spoken to, the lower in carbs and plant matter people go the better they feel. There is a transition period and a mindset adjustment but it just works. 

Now it might seem odd to mention this on a blog about a foot condition? Well I just wish I knew what I knew now back then. If I had weighed 10 stone (which I do), rather than topping the scales at 20 stone(which I did), had I known how great carnivore (zero carb) can be for auto-immune and its anti-inflammatory effect, could I have saved myself the cost and impact of the radiation therapy and years of stress? My gut tells me probably not but my brain and the results I have had suggest that it would have made everything much smoother, more effective and honestly I do wonder if I had been low carb my whole life if I would have even developed the condition. 

I say that because of the massive impact that reducing carbs has had on my physical health and that of my wife. I think it is shocking that we are being pushed more and more onto a plant based diet and despite these shifts the world continues to get less and less healthy. Anyway I won't say anything more on this other than to say to get in touch if you have any questions. 

Exercise:

Obviously back when this condition was bad I could barely walk and my physical activity was massively hampered. Looking back I wish I had done some weight training or something but motivation was severely lacking. Now I am one of the fittest people I know. I do a lot of weight training and am comfortably able to do pull ups etc. and I am one of the the best local runners, normally finishing in the top 3 at my local parkrun. In fact out of the 15,000+ people that have done the parkrun I am in the top 75 of all time. I try to focus on the process and mental health as well and last year ran 2750 miles, many with my daughter on her scooter, with my wife or with the dog. Since my treatment all those years ago I even (badly) completed a marathon for the British Dupuytren's society and still proudly wear my BDS running vests now. 

The Treatments:

Honestly not a huge amount has changed. I would love to be able to say there have been advances and there are some great new injections but the treatment landscape looks much the same now as it did back in 2012. Hard to believe that it has been 12 years.

Finally...

I am now hitting the 12 year anniversary of starting radiotherapy with Dr Shaffer. Having that radiotherapy was one of the best decisions of my life and something I am so grateful for every time I step out the door for a walk or a run. Honestly I am concerned by the growth I have seen over the last 6 months but also optimistic as the lack of pain I am suffering. 

In the future I am hoping to keep on running, getting quicker and pushing through what I ever imagined possible 12 years ago. Hopefully it provides some inspiration and hope to other patients and I continue to keep an eye on research in the hopes that better treatments come along. If I get the time I will try and do a review of some of the literature but accessing and understanding it is much harder now that I am not longer in science. 

Happy feet everyone and please get in touch if you have any questions. 

It can get better

I haven't posted yet in 2023 and wanted to remedy that. It has been a very busy year, mostly with running! I have discussed my running before but this year it has gone to another level. A Ledderhose patient that had to use a walking stick and weighed at least 19 stone at one point (probably more) is now one of the better runners in his area. I will try and make sure I post about my running elsewhere.

I am sure this won't mean much to people on here but I have broken my records for 10k, 5k and the half marathon with a sub 38, sub 18 and 1:25 (on a tough course) during this year. I have come 1st!!! at parkrun 4 times this year and when racing it (it is a run not a race but that doesn't stop us) have not been outside the top 10. 

My proudest achievement this year is running 2500 miles, a few years ago I attempted to run 2191 miles to raise money and awareness of the British Dupuytren's Society but I failed due to injury. This year I have surpassed 2700 miles and just had an amazing year. I won't rave about my running any more, I will post about that elsewhere but needless to say that if you are currently in pain with Ledderhose there can be a light at the end of the tunnel and people similar to yourselves have found a way out. 

Survey closing soon

Hi Everyone, the survey is coming to an end soon. It doesn't take long and is for any US based Ledderhose patient. If you have had treatments some questions may not apply but you can still complete it.

Survey - http://ledderhose.blogspot.com/.../ledderhose-patient...

Please do take part and help gather some data on Ledderhose and its treatments.

So I finished 1st at parkrun!

So an update on me and where I am at. On 10th September I ran my 212th parkrun, yey go me, but this one was different to all those that came before as I somehow came 1st. parkrun is a run not a race but there is still something awesome about coming in 1st and something that has never happened to me before. Honestly, I got lucky, out of the 496 Eastbourne parkruns that have taken place only 10-15 have had slower “winning” times. 

On reflection do I really care? It was the slower summer route and hot, and I had run 55 miles this week so was on tired legs. I did get a PB on the route and you can only beat who is there. Still I am chuffed and just have to remind myself that 10 years ago I was using a walking stick because of Ledderhose disease and 8 years ago I was basically twice the size I am now.

So there you go, a former 20 stone, Ledderhose patient that was fasted with no carb managed to be the first finisher at a parkrun. Wonder what the longest number of runs it is to take someone to get the 1st place token, or who else with Ledderhose has ever managed it? 

In case anyone is interested in what happened: 

It was basically a solo time trial. I started at the front with several others that are normally around my time and got to the first corner, 100m or so in, I am normally at least 10th by this point but was in the lead and there was one guy close behind. The guy behind commented that at least someone knew where they were going so guessing it was the tourist who ended up 3rd. I held back through the first k and according to my watch I wasn’t even on for sub-20, often the case on this route as the start is grassy with lots of turns. Around 2km we reached the dip into an underpass, and I decided to pick up my pace and see if I dropped those behind me, up to now I could still hear them close. 

It worked and I dropped him/ them and from that point was just running scared that someone would catch me, was quite surreal being at the front, only ever happened once before in 2016, only for about 500m and I finished 3rd. With around 800m to go you loop back past the start / finish line and I shrugged to the volunteers as if to say, “how is this happening?” the response was “Go on Gary you Legend”. I kept my lead and took a sneaky look back when I reached the last corner (same as the first one) and knew I had a big enough advantage that it was in the bad, I tried by hardest to sprint to the end and got finish token 0001. Was nice as all the volunteers and other faster runners know my background and were all so thrilled for me.

Not going to lie, I really enjoyed it and was a little emotional when thinking back to everything I have been through. 

Survey and Focus Group for US Ledderhose patients

Hi Everyone, the survey and focus group did not get as much interest as we were hoping. It doesn't take long and is for any US based Ledderhose patient. If you have had treatments some questions may not apply but you can still complete it.

Survey - http://ledderhose.blogspot.com/.../ledderhose-patient...

Focus Group - http://ledderhose.blogspot.com/.../ledderhose-virtual...

Please do take part and help gather some data on Ledderhose and its treatments. Equally interested to hear in the comments why people are not taking part / completing the survey.

10 years since radiotherapy started

I got a reminder on my phone this morning, it is now 10, yes 10!!! years since I started radiotherapy in Guildford with Dr Shaffer to treat my Ledderhose. It is crazy thinking how much things have changed and although I still look back at those time I have come so far. I was out walking the dog for over an hour this morning and for me this was a lazy Saturday morning as I didn't follow it up with an 8 mile run including parkrun. When I was back suffering with my foot and weighing the best part of 20 stone who would have thought that 10 years later I would fast be approaching 200 parkruns. 

It is safe to say that I still consider radiotherapy one of the best decisions of my life, it was quite literally life changing and so much of my life now would likely be different if I had had surgery instead. In a typical day I run with my daughter on her scooter to get her to and from school, take the dog for a walk or run (or two), often go for a run myself, play badminton not to mention the mundane things like I am the one who does the weekly shop round Tesco, no way would I have nominated myself to do that back when I had my bad foot. Tomorrow we are going on one of our regular trips round Legoland and whilst a day on my feet can cause my foot to ache a bit the next day I can see the joy and happiness on my daughters face and think that without RT we would certainly not be able to go regularly. In fact we go so much she asked for it as the theme for her birthday this year, so it is not just my life that is completely different. 

I will forever be grateful for the support and help my friends and family gave me back then and since. 

10 years is a long time, I have lost a lot of people in those years, many of whom helped a lot either by financial and or emotional support during this time but we will never forget that help and the difference it has made to our lives. 

Ledderhose Virtual Focus Groups

Posted in partnership:  Would you like to take part in a virtual focus group with people affected by plantar fibromatosis in the United States? ICON plc and Endo Pharmaceuticals Inc. which is conducting research on an investigational treatment for plantar fibromatosis, are hosting focus groups to better understand the experiences of people affected by plantar fibromatosis in the USA and how it impacts their lives. They are looking for 16 people who are living with plantar fibromatosis. Participants will be offered $200 as compensation. Focus groups will take place in May/June 2022. Please contact Ms. Laura Iliescu, Director of Patient Advocacy, ICON plc at iliesculaura@prahs.com for more information if you would like to take part.  

Ledderhose patient Survey

Posted in partnership:  Please consider filling out this short survey about your experiences as a person affected by plantar fibromatosis. This survey is being conducted by ICON plc on behalf of Endo Pharmaceuticals Inc., which is conducting research on an investigational treatment for plantar fibromatosis, to better understand the experiences of people affected by plantar fibromatosis in the USA and how it impacts their lives. It should only take 10-15 minutes and you can enter to win one of three ($100) gift card prizes: https://s.surveyplanet.com/0m6ytm4u

Anti-tumour necrosis factor therapy for early-stage Dupuytren's disease

For those that don't know or remember there has been a very interesting trial taking place for the use of Anti TNF in the treatment of Dupuytrens. The results of the study have now been published and the complete article  can be found here: https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(22)00093-5/fulltext

Overall it appears that the trial was successful. The nodules that were injected got softer, and progression stopped. This is potentially very good news for both Dupuytren's and in the longer term Ledderhose patients as long only will it hopefully provide another treatment option for these conditions but suggests that scientists are contining to have a better understanding of the condition. 

Additional there is a short video to explain the trial here: https://youtu.be/jyoUkLiUg4Q

There has been a press release which can be found here: https://www.ndorms.ox.ac.uk/news/breakthrough-in-treatment-for-dupuytren2019s-disease

Looking at the results it looks like nodule size and hardness both decreased over time with these injections, both good indicators that the condition is improving with very few adverse issues in response to the treatment. Overall these results look very promising and I look forward to seeing how they progress in the future. 

 

 

New Stuff

 I can't say much at the moment but I am hoping that some new work I am collaborating on will be opening up in the new year. It should be a good chance to gathering some information on some patients and to spread the word and information about Ledderhose disease. 

It will be really interesting to see where it goes. In the mean time I am continuing to try and increase the profile of the condition. We had a good catch up with at the BDS recently and Anna has been working hard with Dr Shaffer to create some really good YouTube Content. 

I intend to post a few of these videos, the first is below and is why it might be too early for radiotherapy. 

Risk Factors for Dupuytrens's

Recently a new article was published around the risk factors for Duputren's and I and by extensions Ledderhose? The article was freely accessible here.

Rydberg, M., Zimmerman, M., Löfgren, J.P. et al. Metabolic factors and the risk of Dupuytren’s disease: data from 30,000 individuals followed for over 20 years. Sci Rep 11, 14669 (2021). https://doi.org/10.1038/s41598-021-94025-7

In summary the article suggests that the 2 metabolic things that are most likely to increase your risk are diabetes and excessive alcohol consumption. Of course the main risk factor is still likely to be some genetic component. I then found another article, also freely available on the following link.

The article is by Dominic Furniss who has close links with the British Dupuytren's Society and has done lots of great work on Dupuytren's in this research at Oxford. This article produced the following table. 

  Nongenetic Factors Associated with Dupuytren’s Disease: A Systematic Review published by Osaid H. Alser, M.D. Rachel Y. L. Kuo, M.B.B.Chir. Dominic Furniss, F.R.C.S.(Plast.) in (Plast. Reconstr. Surg. 146: 799, 2020.)

Patient Story - Ledderhose patient from Australia

Today I have some information from a patient in Australia that I connected with on Facebook, they have had surgery and some injections and are hoping for some more injections.  

My name is Janine, I am 48 and live in Melbourne, Australia. I first noticed a lump on the arch of my foot at the age of 41 and was referred to a Podiatrist. His advice was to get orthotics, so I had some orthotics made which worked great for when I was wearing trainers but they were too thick for any other types of shoes. I was advised to monitor its size with regular ultrasounds. The first ultrasound also found smaller fibromas in my other foot.
I then took on a new job which involved me wearing high heels every day which played havoc with my fibromas. I was recommended to visit an orthopaedic surgeon and he advised to continue with ultrasounds and track their growth and re-visit him 12 months later. The fibromas in both feet continued to grow at 0.5cm per 6 months and were becoming more and more uncomfortable. Plus the one on my right foot had changed shape from an olive to garlic bulb. 

When I re-visited the surgeon he recommended surgery to remove the fibroma as the change in shape could well be an indication of cancer and there was also a very slim chance that they would grow back. The surgery made sense to me and so at great financial expense I had the surgery in 2016 to remove the fibromas on my right foot. Roll on 4 years to 2020, my scar has given me daily pain since the surgery. It swells when I am sleeping, calms down after a hot shower and then gives we sharp nerve pain during the day. 

By 2020 I had noticed that lumps were appearing out the side of my scar and so I went to see a Podiatrist surgeon. He told me that I should never have had the surgery and that the fibromas had indeed grown back and he sent me for an MRI. He gave me a treatment of cortisone injections for the fibroma and collagen injections for my very sensitive scar. I was scheduled to have a further two sessions of the cortisone injections when I discovered this wonderful facebook page. 

I have since provided the Hyaluronidase enzyme injection information to my surgeon and it turns out that from February 2022 this will be covered by my insurance and so we have agreed to delay any further treatment until then.

Virtual Dupuytren's Symposium - 2021

The registration and program have been released for the next Dupuytren's Symposium and there are some interesting sessions that I am looking forward to attending. 

You can see the whole program here.

Highlights for me will be the session on radiotherapy because 1) It worked so well on me and 2) 2 of the papers being discussed are on the treatment of Ledderhose:

Session 4: Wednesday 3rd November, Time: 20:00 UTC (20:00 GMT)
Radiotherapy

Keynote: Radiotherapy for Dupuytren Disease
Dr. Richard Shaffer, The Dupuytren’s Practise, London, UK

1. A Randomized trial of Radiotherapy for Dupuytren’s Disease – DEPART
J. Martin, Newcastle, Australia
2. Radiotherapy in patients with painful Ledderhose disease: a randomised, multicenter, prospective, double-blind phase III trial.
A. de Haan, Groningen, The Netherlands
3. Radiotherapy for patients with Ledderhose disease: long-term efficacy, side effects and patient-rated outcome
A. de Haan, Groningen, The Netherlands

After this I am also looking forward to session 6 which is experimental treatments. Looking forward to getting an update on the anti-TNF treatment. 

It is a shame that the conference is having to be held virtually as last time it was such a great experience meeting up with everyone and learning a lot from all the different people at a single conference. 

Collagenase for Ledderhose?

I have previously covered the topic of Collagenase injections by looking at various aspects of it including its use in cells, interviewing a Doctor that uses it for Dupuytren's and covering the material presented at the Dupuytren's symposium. Because it has not been approved for Ledderhose I don't have a specific page in detail on the treatments page. 

There are a couple of different enzymes that have been trialled to break down these lumps and it looks like Endo are hoping that their product can be an option for Ledderhose. 

Endo Presents New Investigational Collagenase Clostridium Histolyticum Data at the American Podiatric Medical Association Annual Scientific Meeting

So what does the article actually say? 

That there have been some encouraging clinical trials done on using CCH in the treatment of Ledderhose disease. Basically so far their studies are indicating that the injections are well tolerated by the majority of patients and that most are seeing an improvement in the condition. Overall it sounds promising but obviously they are still looking into it and I know there have been mixed experiences with using it to treat Dupuytren's. 

Would be good to have another treatment for Ledderhose, of course assuming that is a successful and viable soltiion. 

Patient Survey Results from 2015

I mentioned recently that I wanted to do another patient survey, this time Ledderhose specific and probably focusing on demographics, risk factors and patient opinions on the treatment options they have received. I plan on making sure that any survey would be better planned in terms of how to perform the data analysis, something in my day job as a database developer I have to think about a lot. 

Here is a throw back to the 2015 symposium where I presented on the Ledderhose portion of the survey. 

Dupuytren's Practice Blog

 I saw a new blog post by Dr Shaffer posted recently and it is worth considering reading it. The content relates to when is it too early to get RT for Dupuytren's? Now while I know from experience and Dr Shaffers comments the case for Ledderhose is slightly different, however it is good to be knowledgeable that it is not always the right time to have Radiotherapy. 

The Dupuytren's Practice Blog Post

I won't go into the post in detail because that is what the link is for. I have also seen some YouTube videos by Geesis care that I plan on reviewing. There is also a paper on low dose radiation therapy for benign conditions. 

I originally only scanned the article but noticed TGF mentioned which I had covered previously in a post on the pathways linked to the development of Dupuytren's. Be interesting to see whether the proposed mechanism of action of RT / pathways impacted is the reverse of the expected for the cause of Dupuytren's. 

The return of 5k parkrun

There was a sense of normality this morning as Eastbourne parkrun returned, the 1st time since March 2020. Having recovered from Ledderhose through radiotherapy and then used my new found health combined with a LCHF diet I got fit and started running. 

Since 2015 a large part of that running has been parkrun. The great thing about parkrun is that anyone can take part, it is free and almost everyone is happy to see everyone else. I have done well over 100 parkruns and including junior parkrun (a shorter event for kids on a Sunday) have nearly completed 100 volunteer stints as well. Given the evidence showing a lack of outdoor transmission of a certain condition it has been disappointing (but understandable) that it took parkrun so long to come back.

parkrun is wonderful for your fitness but for the sense of community and mental health. You make so many friends and get fitter at the same time. It was wonderful to be back running with all those familiar faces even if things were slightly different. 

                   

 

9 years post radiotherapy

It is now almost 9 years to the day since I finished my 2nd week of radiotherapy, you can read more of my background here.. That was back in 2012 (obviously) and how things have changed since then, though we do have another Olympics about to start. 

I still reflect that is crazy how much has change, not just that I now have an 8 year old daughter but with the Ledderhose and things. Thanks to the radiotherapy I have gained my mobility and am not just able to walk pain free but run pain free, well with no pain from the fibroma, running can still be painful. Although standing for long periods of time can cause issue we still work our way round Legoland and have a great time. 

Thanks to Low carb I have lost weight and am a keen runner. I am really excited that parkrun is about to return in England looking forwards to work my way up from the 150 I have completed so far and I am nearing 100 volunteers as well. With lockdown easing I am looking to get properly back into my running and would love a proper crack at my 10km PB early next year. 

I am hoping to do some more Ledderhose stuff soon, more to come on that in another post or two. I am potentially looking to do a follow up survey from the one in 2014/2015. I have learnt a lot since then around survey design, what I would want to focus on and I have learnt so much in terms of data analysis and that side of things. Still just an idea at the moment. 

Another thing I would like to do is a literature review, although I have been keeping my eye out for ground breaking papers I have lost touch a little and would like to see of there is any exciting Dupuytren's or Ledderhose news I have missed in the last few years. 

Really this post was just to get the ball rolling, to say hi I am here and that I will be looking to post a little more again. Maybe tomorrow I will do a post parkrun post, so happy that things are getting back to normal but I don't want to get into that. 

500,000 page views (almost)

I have had some interesting discussions in the last few days around Ledderhose, it has been a long time since that has been the case and it was interesting delving back into some Ledderhose based stuff. These conversations led me to looking at the blog and realising that I am fast approaching half a million page views. 

On the one hand that is not a huge number of page views in the grand scheme of things but at the same time I have not posted frequently in a long time and the blog is about a rare condition so the potentially viewer pool is pretty small. 

This year, in November, will also mark 10 years since I launched the blog. I have come a long way and posted about a lot of things in that time frame. The most popular post is still the original post of my story, I have expanded this as I have gone and it does track my progress pretty well. 

On one of my chats I mentioned attending the Symposium and could not believe that was 6 years ago, fingers crossed the next one manages to take place. Attending and presenting at the symposium was a fantastic experience, I learnt a lot and feel that the BDS / IDS showed that patient advocacy can be useful. 

Other highlights include all the patients and professionals I have interviewed and of course on a personal note in that time I have gotten married and had a child. 

So thank you to everyone who has viewed or contributed to the site since I started it, maybe in another 10 years I will be hitting 1 million views!!! 

8 years post radiotherapy

I had a little notification pop up on my phone today, "Start of Radiotherapy Birthday"

Made me think that it is now 8 years since I start my radiotherapy journey. Hard to imagine a life where I couldn't walk, now I run, play with my daughter and am 60% of the weight I was at the time. I still get patients asking if radiotherapy was the right thing to do, especially at such a young age. Obviously given the result I have had it was the right choice and I am delighted with the outcome. 

So are some posts I did on: 

Day 1 of Radiotherapy

The symposium where loads of treatment, including RT were discussed and I presented!!

My interview with Dr Shaffer 

Anyways this was just a little update to say that I am still here, I am still running and my foot is feeling great.