Today I am lucky enough to have another interivew with a Ledderhose patient to post. This is someone that I met on the forum I made - Plantar Fibroma Support Forum, which is for anyone with Plantar Fibromatosis or Ledderhose disease that wants to chat with others in the same boat. I don't get many people here due to the great forum that the International Dupuytren's Society run. Still it is nice to know that some people come across the blog through my forum or get to the forum through my blog.
1) Do you have Ledderhose disease, Dupuytren's disease or both?
Ledderhose disease. The tumor on the left foot is about 5 cm (or about 2 inch) wide and the one on the right foot is about 4 ½ cm (about 1 ¾ inch) wide.
2) How long have you had Ledderhose disease and how long has it been a problem?
Around the end of 2010. It got to a point where it was painful enough that I had to seek medical attention in October of 2011.
3) What treatments have you had?
I have had orthodics made to leave space where the tumors are. I also take Oxycotin 15 i.r. for the pain now. I originally took hydro 10 for the pain but they were no longer helping. I have also had to have a MRI scan and a biopsy done.
4) Were any of the treatments successful?
The orthodics have helped some. The tumors on the right foot have grown bigger than the orthodics but the right one is still helpful. The orthodics were not covered by insurance (cost $500). The MRI was only partially covered and cost me my deductible ($600). Since then the insurance company has sent me a refund check for the cost of the MRI. The medication has been mostly covered and cost $10 per refill.
5) What are you planning on doing now?
In the next couple of months I will be starting chemo to help reduce the size of the tumors. We were originally going to do Nexevar, an oral treatment, but we decided to wait and try P.L.D (pegylated liposomal doxorubicin), an intravenous treatment that the doctor said had a higher chance of being successful.
6) Do you do anything to help alleviate the condition?
I walk with a cane whenever possible. I actually have several cool canes so I don’t feel like an old man (I am 29). I don’t feel comfortable using them in public places but I do use them around the house and when walking to my car or to my neighbors, or if I need to go up to work for something. They will not let me use my cane at work.
Keeping my feet elevated helps with the pain. I also find that Tiger Balm is helpful with the pain, but it feels gross to walk on. If I’m not at work or somewhere public, I wear slippers that are well cushioned on the bottom.
7) This question is aimed at your partner, how does she help and support you through this?
My partner has been very helpful. I have an extremely hard time climbing stairs and so I rarely go upstairs where our bed is located. I’ve been sleeping on the couch on the first floor for about six months now. Normally when I need something from the kitchen or need a book or something she’ll get it if I ask her too (I rarely ask her, because it makes me feel bad to ask her and to rely on her). She also helps me with driving. It’s painful to use the pedals to drive so she’ll drive if I’m hurting. My medication also makes me very dizzy and sleepy so if I have recently taken a pain killer she’ll drive for me.
I have to say that I found this an interesting case as I have not come across someone who has been having chemotherapy for Ledderhose disease and in fact I did not know that this treatment was an option. A little bit more digging and seems it is quite a rare option that is mainly used for agressive cases. I suggest seeing here for more details if you are interested.
It was also nice to get things from another point of view of a man in his twenties that has to use a stick to get around. I know I hated this feeling when I first started using but most people either don't notice or care and actally ask more which helps raise awareness.
I hope we can catch up in a couple of motnhs times when hopefully we will both be benefitting from our respective treatments.
