Hello all = OK, Day Four done at 600am and back for another round at 100pm, with the last one being tomorrow morning. To Bleu and Debra =

1. I had no MRI, none needed as most of my issues are just below the skin. You meet with Dr. Herman and Matheson on your first visit on a Monday, they have you 'measured' to determine where and how much the dosage of RT will be for you. Then, your first treatment is later that day.

2. The Residence Inn @ 400 E. Reno in the Bricktown area of OKC is great because it is close to the OU RT center, a short cab ride or drive, free breakfast and several nights of free meals. The rest of the time you are within walking distance of many food places, Sonic, MacDs, or some really good places like Toby Keith's Bar Grill which is next door and is great. You are right across the street from the baseball stadium and the Inn is on The Canal which goes along the Bricktown area, there is a nice movie theater, bowling within walking distance and many more things we haven't seen. Also, if you mention to the Res Inn you are having an OU medical procedure, you get a discount off the room rate. The rooms are A+, I highly recommend this place. I take a cab and get my RT and cab back within 45 minutes total. Can't beat that.

More details on the RT for my LD:

There are seven treatments over a five day period. The reason to avoid water is more to avoid skin irritation - it has nothing to do with the radiation, I was wrong about that, it just keeps the skin from being irritated. So, avoid extreme water temps, hot or cold as to avoid skin irritation.

Here are the details of the RT (I don't understand medical jargon, so I'll just give you what they gave me. When i get treated it is as follows:

12 MEV
300cGy per foot per treatment
7 treatments
0.5 cm bolus on skin

This relates to the depth and amount of RT per treatment. As I have been told, this is NOT a large amount, electron rays, not Xrays, BUT, with OTHER cancers, they do use both electron and Xrays, depending on what you have, most of the Xray is used for brain, lung, etc cancer treatments. Much more severe and intense radiation.

The odds of my RT giving me a secondary issue is hardly measurable. Now, I am telling you this = having researched and waited for years, SURGERY for LD has not shown ONE case to be a success, or I haven't seen one case yet where anyone was satisfied. Most of the time, the nodules came back with a vengeance. And, it occurs with hands or feet, I know. I've been there with the hands. So, I waited on my feet until I found something better, non-invasive. If you are reading this, and have junk growing on your feet that is confusing you (and almost every doctor or foot specialist), then there is a really good chance you are developing LD. It will just get worse, and surgery has proved to make it worse. Dangerous, even.

After having met and dealt with Dr Herman and his staff at OU Medical Oncology, I would suggest this to ANYONE to consider this as an alternative to any other way to deal with LD. We need more Doctors like Dr. Herman who think outside the box and consider the help and care for this crappy disease that I'm sure thousands of people are suffering from, or will be, because it is genetic. And, if you have a job where you have any sort of vibration in your hands or feet on a repeated basis? And you are genetically prone to this? You have a really good chance of developing DC or LD.

Also, they explained that RT is not recommended on knuckles or on joints because of something to do with fluid issues, so if you have pip problems, RT is not a good choice or may not be done by any Dr. that uses RT for DC or LD.

Dr. Herman is collecting data to release a publication on the results on RT on DC and LD. So far, most, not all, but most of the data suggests success and you can read several on this forum that have had success. I feel quite sure that I will, as well. One reassuring item, too, is that once the progression stops and the area cells are affected, the nodules that are there now breakdown, stop progressing, and no new ones will appear. IF, and it is rare, that the first round does not work, they will do another round and they have yet to have anyone have any issues after the 2nd round. Most of the time, the first time does the trick.

So, hope this has helped someone. I am no expert, but I did enough research to seek and find the OU RT center and Dr. Herman after the publications of the German Dr. Seegerschmidt? and his findings. I also read that another German Dr. received the highest award for his work in this area. So, look into this if you are having issues. The earlier, the better. Stop it dead in it's tracks, because I've dealt with this junk for a couple of decades and it really sucks. Hands and feet. If you are of Northern European descent? Check your family and genetics and see if anyone has had this garbage. If they have? Watch out closely.

drumhead

Hello all: Back home (feels great), I've had zero issues, not tired, no feeling bad, nothing. As far as my feet, I'm continuing to keep them dry (except for some Aquaphor cream they gave me, which I really don't need, but put it on at night with socks).

Feet are a little more red (like a sunburn), but so far, no itchy feelings. The nodules are still there, but it is too soon (they don't magically disappear overnight). Dr. Herman said the biggest change should occur within about 2-3 months, we will be doing a phone consult then. In about a week I'm going to hike on some rocky terrain for a day and test the waters a bit.

I'll get back then, and we shall see how that day, but more importantly, the NEXT day feels. I usually can do things, but the next few days my feet are sore, or MORE sore, than usual.

If anyone has any questions I missed, didn't cover, just ask here. I'll give you my best response. It's funny, Dr. Herman said that he hardly EVER gets any referrals from foot Dr's or foot specialists. It's up to the patient to find them, on their own. Ever since I developed this LD, I have felt alone and 'on my own'. Most illnesses or diseases have a known procedure or process for treatment, but so very little is known about DC and LD it is basically ignored (when I say ignored, I mean in the scheme of the medical world doing all they can to find a way to deal with these diseases) compared to life-threatening issues. This is fine with me, but more and more people are starting to get this and I'm certain there are THOUSANDS who have DC or LD or Peyronie's and don't even know what the hell is going on = because it's a real good chance their GP doesn't have a clue.

It took me literally 20+ years and lots of tough decisions about what to do. The MAIN ADVICE I can throw out there = DO NOT cut on your feet. For ANY reason and if you are diagnosed with Plantar Fascitis (sp)? Get another opinion. Removing the Plantar region will result in permanent issues for you. Cutting to remove LD is rolling the dice, most of the time, it returns with buddies (more and more show up).

THANK YOU Dr. Herman and all the great staff at OU Oncology = I felt like I had finally found OZ = not to go overboard, but I didn't have to try and explain anything to them = they know why you are there. And, they know how to help you. Call them and ask for Dr. Matheson first, he deals with first-timers on the phone, 95% of the time. He goes over your issues, then sets up a time for you to talk with the staff about records, insurance (you will need it probably) and they take it from there. If you are a good candidate, your first day you will meet with both Dr's and your first treatment will be later that very day. One week, seven treatments total, then the RT is in your cells and you observe to see how it affects you over the next few months.

I hope this helps some of you who are wondering what to do. I do plan on going to Germany to see Dr. Seegenschmidt's(sp) facility, maybe thank him for his hard work and making all of this possible. Also = I predict once a US doctor publishes the data, maybe more Oncology Units in more cities will offer this as a proven treatment for DC and LD. I think that this is coming soon. In the meantime, hang in there = things are looking up.

drumhead

Hi Drumhead,

THANK YOU SO MUCH for your posts on your treatment details and experience! I can't tell you how much it means to me to read something positive about this disease. I have Dupuytren's in my left hand and Ledderhose nodules in both feet which are just now starting to really bother me. I have been to a podiatrist and an orthopedist but wasn't given much in the way of treatment except for cortisone injections which I have not had yet. I have been hesitant to research the diseases because what I have found out is very depressing. But now, you have given me hope that there is treatment that could at least stop the progression. I am very anxious to hear that this has been a success for you and am looking forward to your future posts. Thanks again.

Diane (Chobe 2)

Chobe2:

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I have been hesitant to research the diseases because what I have found out is very depressing. But now, you have given me hope that there is treatment that could at least stop the progression. I am very anxious to hear that this has been a success for you and am looking forward to your future posts. Thanks again.

Diane (Chobe 2)

Hi Diane
Nice to hear back from you

My story starts with pea sized nodules in the arches that remained that way until 2010, when they started progressing really quickly, growing into one about 4cm and the other smaller, but deeper so I can feel it when I walk. They only just became symptomatic about 4 weeks ago, with general aching, neuropathy in the balls of the feet, and all over burning. Fortunately the worst symptoms have now subsided to just the general aching, but I do worry about the future as they seem to be progressing quite quickly. I've also got achey hands without any visible nodules to date, but will be having them investigated when I get my feet treated. I've always been an outdoors type, with favourite activities swimming, walking, trekking and cycling.

I've decided RT is the right treatment for me and am just working through where to go to have it as there are not many experienced with this condition in Australia. The earlier you get it the better seems to be the experience by both people with the condition as well as the radiation oncologists, so I intend to have treatment in the next few months.

I've just posted a new thread about management of the condition and share a bit about what I've learned from others on the forum and what I've tried so far in an attempt to find out if there's any other management strategies that work

I've also posted an earlier thread about how I first felt when I was still in the initial stages of despair - before I discovered RT and the hope that came with stopping the progression!

I will also be posting stories from my journey as I have benefited so much from the contributions of others. I'll be looking out for your posts and wish you all the best

Di