Saturday, 25 January 2014
About 5 years ago, I developed a bump behind my big toe on my right foot. I had no idea what is was. I mentioned it to my doctor, who is a very well connected Dr, in Philadelphia. (I drive 2 hours to visit him from my home town). He referred me to Dr. Robert Cohen.
I really had no idea what to expect, and sort of assumed that as long as it was not cancer, it was going to be no big deal. Well, it was not a cancer, and Dr. Cohen confirmed it. At this point, I had no real discomfort, but was worried about the bump.
He put me on Verapamil as the initial treatment, and it did not really do anything.
Dr. Cohen subsequently did a cryosurgery on it, and I really expected it to be broken up and dramatically shrunken after the procedure. I revisited a few weeks later, and the Dr. was quite happy with the change in size and shape. I personally really did not notice any significant shrinkage, but it had become a bit elongated.
Over the next 2 years, I did the procedure 2 more times, with nominal results, that were duly noted by Dr. Cohen after he ran an ultrasound each time.
After the 3rd treatment, I stopped going. I really did not feel any great change, and I had not really had any significant pain anyway.
I had been given a pair of orthotics to lengthen my arch, with a small shaping around the fibroma to remove some of the impact on it as well.
I went through the next 2 years, with no real concern about the fibroma, and I felt like the cryosurgery was pointless.
I have recently changed my mind. The fibroma has gotten a little bit larger, and is much more painful. I get the burning sensation that others describe. In particular, each morning when I first put weight on it.
I will be going in February to have it evaluated again, and have a new cryosurgery. I am hoping it will disrupt the fibroma enough to set it back to where it was just an annoying bump without the intermittent pain and burning.
The Cryo process:
The surgery is really simple. They numb the foot, cut a small (size of a drinking straw) hole in your foot, and insert a tube that forces cold (like a dry ice) into the fibroma. They continue this insertion until the point where the cold my damage other tissues. You are wrapped in a sterile bandage, and your foot is wrapped in a hard paper boot, that diverts weight around the arch, and you walk out.
After 3 days, you take the bandage off, and put anti biotic on twice a day like a normal cut, and go about your business.
Cryosurgery is NOT a cure. Not even close. It may not even reduce the fibroma. But, my instincts tell me that it did delay any increase in size, prevented pain within the fibroma, and was a good thing.
I would like to emphasize that my final thought in cryo is that it is a tool to reduce pain, nominally shrink and reshape the fibroma and slow the process down.
Sunday, 15 December 2013
Ok so the crazy moment has arrived where my blog had now had 100,000 page-views!!!!
When I started the blog I never imagined I would get 10,000 page-views let alone to 100,000 and sometimes 5000+ in 1 month. Although I have been the one asking a lot of the questions and doing the research I have to thank everyone that has done an interview as they are really popular and helpful posts that really make the blog as successful as it is.
When I got to 1000 and 10,000 page views I did a recap on some of my favourite posts and things since I started and I thought it would be nice to do that all again, especially as so much has changed. Not surprisingly none of the science posts or treatment posts will make my list as although they are useful they were not as enjoyable as many other posts.
1) The original post that I have been updating. This is by far and away the most viewed post on the blog and probably is one the most useful posts. I started this post when I was very low and my foot was really starting to progress and get to me more and more. It began to show to others how I was feeling and how bad the foot was, it ultimately it was started the blog and got the ball rolling.
|Everyone who ran / walked to help raise money for me to get radiotherapy.|
2) The run to raise money - Whilst the post was not that significant and may not be that useful to visitors the run itself showed me how much various people cared for me, how much of their time efforts and money they were willing to donate to help me and to get my foot better. Thank you again to everyone who ran and donated as this was the start of road to radiotherapy.
3) I got married - It seems like a long time ago but back in February 2012 I got married to my wonderful wife. She was my rock when this condition was awful and I owe a lot to her. There is no specific post for the wedding but instead I'll link to the interview she did for the blog.
|Me and the machine about to zapp me.|
4) Starting Radiotherapy with Dr Shaffer - Back in May 2012 I started radiotherapy with Dr Shaffer. This treatment has so far led me to be able to live a normal life, no walking stick and I can run and play badminton. I remember the day my wife and I went for this first day, it filled me with hope and was the first time I had had anyone draw on my feet.
5) My interview with Dr Shaffer - I am not referring to the consultation (which was very good) but to the interview I did for this blog. It was the start of getting specialists to post on here, a great addition and it brings a genuine medical perspective to the treatments. I am biased because Dr Shaffer treated me but he did give a very detailed review of things and I am still in contact with him now.
6) Helping other and their e-mails - By far the best thing to have come out of the blog is that I have managed to help others. It is a fantastic feeling when someone tells me that my blog has helped them, whether it just be that they no longer feel alone or whether it is like the linked e-mail where the lady found Radiotherapy and Dr Shaffer. I have continued to stay in touch with the very nice patient who contacted me and she, like me, has seen a great improvement after radiotherapy.
7) Ditching the stick - Pretty much all of 2012 was spent hobbling around with a walking stick and in a great amount of pain. Towards the end of 2012, after my radiotherapy, I gradually started to walk without the stick and come the end of the year I decided to walk with the stick. It got put away and I no longer carried it with, since then I have not need it and have progressed on to...
8) Playing badminton and running again - When I originally started the blog I did a post along the lines of the things that I miss, when I came back to it later the only thing I really missed was badminton and my freedom to be able to get off the bus a stop early or walk from a car park to a restaurant etc. I am now back fully playing badminton and running (up to) 10km. Anyone who has this condition will know what it feels like to live with it day in day out and to get away from that and being able to run was the ultimate way to celebrate radiotherapy working.
Amelia -Just as I was starting to get over this condition my wife became pregnant, this was fantastic news and I remember how delighted I was to see the positive test. However from there the pregnancy was awful, constant sickness and trips to the hospital for dehydration. Still at the end of it our beautiful daughter arrived. Amelia is fantastic and her smile never fails to light up a room. I can wait to see her develop and I am loving seeing all the changes that take place as her personality takes shape.
Some things still annoy like when doctors say they will do an interview and never send back their answers or they just ignore the first e-mail, I am not asking a lot of them and not only could the interview help patients but it also helps patients find them.
I guess the next goal is to get to 1,000,000 page views and more importantly hopefully help at least 9 times as many people in the next 900,000 page views as we have helped in the first 100,000 page views.
Tuesday, 10 December 2013
As everyone should know the primary goal of this blog is to help Ledderhose patients, but at the start it was about my day to day problems with the condition, so I still like sharing my experiences etc.
And I am happy to say that since I got radiotherapy been on the path towards becoming a badminton coach, I always loved playing badminton and it was on my list of things I missed when I could barely walk. The plan for this badminton coaching is just something I can do for a couple of hours at the weekend and hopefully make a little bit of money. I am happy to say that at the weekend I passed the final coaching exam and yesterday I was informed I had passed the 1st aid course; one of the requirements for being a coach is having basic first aid skills.
I am really enjoying being back on my feet and back on the badminton court, I hope that my wife doesn't mind me going on about badminton too much but the fact I couldn't play so long is partly why I am so excited, that and it is great to have passed the final assessment and now be a fully qualified coach. I am lucky that she has been so supportive and has been a great Guinea Pig with her game improving steadily. Whilst I am not going to push the sport on Amelia I hope that me being a qualified coach means I can make the sessions fun enough that she is at least going to be interested for a while.
I am going to start a blog on badminton as well, but my priority (as far as blogs go) will still be this blog, after all it is not a big problem if people have a delay in getting better at badminton but a patient contacting me about this condition could be feeling quite lost and lonely.
All the best and watch out for the 100,000 page-views post coming soon.
Saturday, 7 December 2013
Today I have an interview with a very experience plantar fibroma patient. She has had numerous surgeries and it a perfect example of why I personally do not think that it is a great option for treating the condition. Read on for her story.
1. Do you have Ledderhose disease, Dupuytren's or both and at what age were you first diagnosed?
I have both Ledderhose and Dupuytren’s, in both feet and both hands, and I have knuckle pads on 6 knuckles. I was first diagnosed with it (Ledderhose) when I was fifteen and I had a 'bump' on my instep that hurt. I was a gymnast and I just couldn't compete with the 'bump' so the doctor recommended it be removed so he could find out what it was. He removed it in his office under local anaesthesia, threw in a couple of stitches and sent me on my way with orders to stay off it for a week. Within a couple of months it grew back, bigger. My hands started a couple of years later, in my twenties. I have cords, tumours and knuckle-pads.
2. Do you have a family history of the condition, if so how prevalent is it? (I am happy to produce an anonymous disease family tree)
My father had Dupuytren’s but didn't know what it was at the time, and complained about bumps in his feet but again didn't do anything about it. He passed when he was 40, I was 15, he never had anything done. I feel that had he lived longer he would have had a doctor work on both his hands and feet, and we would have learned more about this disease sooner. At the time no one else in the family had the disease that we know of. I have five children, 4 boys and a daughter. My second oldest son has Dupuytren’s in one hand and looks like he is growing a tumor in one foot. He is 24. My 4th son also has Ledderhose in one foot. He noticed a small bump and questioned me about it. It has since grown and now measures about 1 inch by 1 inch. He is 22. One of my sisters(I have two and no brothers) has Ledderhose in one foot. She was diagnosed when she was 45 and had her surgery that same year. Her tumor grew back bigger, but she is still able to get around with minimal discomfort. She has not had any more work done on her foot....yet. Her daughter has it in one foot also, diagnosed when she was 2 but the tumor never grew so she never had anything done. It remains the size of a large pea in her instep. My other sister who doesn't have either disease has three kids, one who has Ledderhose in one foot. She did two rounds of cryo surgery when she was 17, then at 18 had surgery to remove the tumor that had grown quite large. It's been 4 years since her surgery and the tumor hasn't grown back, not that she has noticed.
3. Please describe your progression with the condition up to the point that you required treatment.
Like I said, I had my first surgery at the age of 15 and since then I have had 30 surgeries on my feet and 5 surgeries on my hands. I have had both fascia bands removed from the bottom of both feet in hopes that it would stop/slow the growth of the tumors. I have had fibromas grow on the outsides of my heals, on the balls of my feet, on the insteps growing up into my ankle, and towards the outsides of my feet. At the most I had 5 tumors removed from one foot at one time, and the largest was 9cm x4.5cm by 2.5 cm deep. And, this was growth in only a year. The form of Ledderhose I have is very aggressive.
4. What treatments have you had other than surgery?
In the fall of 2011 the tumors had grown so large and my left foot was swelling to the point I couldn't even get a flip flop on, and the doctors deemed my feet couldn't withstand another surgery so I set out looking for an expert in the field of Ledderhose disease. After a long search and many visits I found Dr Lackman and Dr Staddon at UPenn Hospital. Dr Staddon is an Oncologist Hematologist and he knew everything about this disease. Dr Lackman is an Orthopaedic who also is very familiar with this disease. Dr Staddon said they were having promising results with Methotrexate and Valban given intravenously once a week for 8 weeks. I did that course of treatment but had no good results. Then he said there is an experimental drug that is used for the treatment of non-operable liver cancer, that has proven to reduce the size of fibromas. The drug is Nexavar, I took one tab in the morning and one at night. The drug is powerful with side affects, but it did shrink the tumors to less than half their size and reduced all the swelling. I was on Nexavar for 10 months, then taken off it to see how the disease reacted. I have been off it exactly one year and the tumors are growing, but they are growing at a much slower pace but are causing considerable pain. I return to the doctor on Dec 10 and will find out what course of action he plans to take.
5. I understand you have had numerous surgeries, please could you describe the progress and the recovery times, recurrence times?
I had 30 surgeries from the age of 15 to 47. There was a couple of years where I was having two surgeries a year, one on each foot. The surgeries lasted anywhere from 2 hours to 4 1/2 hours, I was off the foot totally for six weeks, then started slowly putting weight back on it. Within months, roughly 6-8 months, the tumors regrew large enough to cause pain and make wearing shoes almost impossible. Sometimes the tumors grew in the same spots where I had just had them removed, and sometimes they grew in new spots. The bottom of my feet, and my hands, look like some kind of terrible road map.
6. What information were you given about surgery and other treatment options for this condition?
The first few surgeries I was told this condition is rare, and rarer in a child. I was also told that the chance of reoccurrence was very slim. Fast forward a couple of years and a few surgeries later, the information changed. I was told the reoccurrence rate was very high and to put off surgery until the pain was unbearable. In the beginning I couldn't find any information about this disease, but with the growth of the internet I have learned so much, have met so many different kinds of people from all over the world who suffer from this disease, and am a member of a couple different Ledderhose/Dupuytren’s groups. Other treatment options that I was told about was a cream that is used to reduce the size of the tumors. My doctor tried to contact the pharmacy but had no luck getting in touch with anyone over a two year span. I have also been given cortisone shots to see if it reduced the size of the tumors. The shots did nothing but cause further pain. I was also told about Cryo where they insert a probe into the tumor and try to freeze the tumor to kill it, but as I said earlier my niece had this procedure done twice and did not have promising results. My doctor at the time didn't feel this was an option for be because of all my prior surgeries.
7. What treatment options are you seeking now?
Right now I am waiting to see what my next step is going to be with the cancer drug Nexavar. Because there is no documentation for this drug and Ledderhose my doctor isn't quite sure of what step we should take next. I might have to go back on the drug because of the pain and because the tumors are growing again. Hopefully the time frame will be shorter than my first go around. I will see the doctor next week, so after that visit I will let you know what path we will be taking. I am also getting MRI's every three months to check the growth of the tumors and to make sure they aren't affecting nerves and tendons.
Finally do you have any other advice you would like to give to patients?
Read as much as you can on this disease. I have found every case is different so what works for one won't necessarily work for someone else. If your tumors aren't causing pain and are slow growing don't rush to have any procedures done. And, make sure the doctor you do pick knows about this disease inside and out. Don't fall for any quick fix promises, for there aren't any in regards to this disease. And, lastly, know you are not alone, there are many of us out here that are suffering from this same disease.
Wednesday, 4 December 2013
Last year I interviewed by wife, this was to give a story from the point of view of someone living with someone that has the condition. I felt that this perspective was important because I am sometimes contacted by patients partners or parents and their lives are being impacted as well. I felt that since so much has changed in the last year it was a good time to do a follow up interview.
1) Your husband had radiotherapy over a year ago, how long did his improvement take and what changes have you noticed?
1) Your husband had radiotherapy over a year ago, how long did his improvement take and what changes have you noticed?
The improvement was pretty quick, from what I remember. By the time he went for the second round of radiotherapy he was already noticing a reduction in the size of the lump. Gradually over the months afterwards he was able to walk better and better until we got to the point, and I can't remember when this was, that he started to be able to walk without his stick. By May this year, when our daughter was born, he was able to start doing a small amount of running and just a few weekends ago we both managed to run 10Km for charity. This is a huge achievement for him and it's amazing how far he has come in just 1 year.
I no longer recognise the things I wrote as they are so unreal. On a day to day basis I don't think about his foot, I mostly forget about it because it doesn't need to be a consideration any more. we went from a point where he was needing so much looking after to a point where he had to look after me, a complete shift in roles. He was able to do everything we needed him to. Now he is the one doing all the badminton playing and the running and I'm trying to pick myself up and join in with him. I know that for him his foot is, of course, a consideration but now I can trust him to stop when he needs to. I feel like we're back to supporting each other and I'm glad his foot is no longer the start and end of a day.
3) Is there anything else you would like to add?
I'm glad that the charity was there for us when we needed them and that Gary is now so involved with them. If anyone isn't sure about radiotherapy, from our experience, I would say at the very least look into the option. For us we thought we'd give it a shot, we had nothing to lose. We never expected such amazing results. It was very emotional for both of us when Gary was able to not only complete but run a full 10Km. I'm so glad we weren't forced down the surgery route and we're encouraged to pursue radiotherapy and I'm so grateful to all those people that helped us raise the money for us treatment. Our life is drastically different to what is was during that time.
Text from last interview:
I don't have to do anything but of course I want to, to try and minimise the pain he's in. If I can limit the amount of time he's on his feet then great, so I try and do all the manual housework before he can. We now park much closer to our venues; no matter whether we have to pay (I used to always find free parking further away). I have to consider whether he's up to going around the supermarket that evening and whether I need to drop him at the door. Sometimes it's so bad I have to go and get the car to pick him up even if it's not that far away. Since starting my new job I'm not able to pick him up and drop him off so much but I always try and consider whether it's an option to collect him.