Thank you, Michael. I guess I can live with dry hands, especially if it means no contracture.

Larry:

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switcombe:

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Thank you, Michael. I guess I can live with dry hands, especially if it means no contracture.

I am using after my RT course - recommended by Prof. Seegenschmiedt - a specific ointment called Excipial U Lipolotio with 4% Urea which is produced by the Swiss company SPIRIG


The costs are about 10 Euro for a 250 - 500ml container which usually lasts for 3 - 4 months



In addition I try to follow the following "rules"

(1) Cleansing and caring for dry skin


Dry skin needs fats as well as moisture. The fat cells in the skin (epidermal lipids) form a barrier that minimises the loss of water through the top horny epidermal layers, thus protecting the skin from drying out. A comparison can be made with bricks (the horny cells), which combine with cement to form a protective wall. If this protective barrier is damaged, the skin reacts with particular sensitivity to both internal and external irritants. The term "skin care" refers to the help given to the skin to achieve the correct dose and to remove the state of deficiency in a well-directed way. We have developed special skin care products, such as Hydroderm Omega, Lipoderm Omega and Excipial U Lipolotio, in order to balance the lack of lipids in dry skin.


(2) Tips for cleansing dry skin

> Avoid long, hot baths
> Keep the water temperature between 30° to 35°C
> Use typical "soapy" cleaning materials sparingly and rinse off thoroughly
> Use mild alcohol-free products that have an intensive fat replacement effect

With the addition of sorbitol (a moisture retainer), soap-free Excipial Clean is suitable for mild cleansing of dry skin.

(3) Tips for the care of dry skin

> do not expose yourself to excessive sunbathing sessions
> stick to a regular skin care system, even in phases when the skin is doing well, e.g. use before sleeping
> do not use the socalled "all-purpose solutions" - select products according to the cause of your skin dryness
> the solutions should have a high fat content: W/O emulsions have a good protective effect
(e.g. Lipoderm Omega, Excipial U Lipolotio)
> use products containing moisture retaining substances (e.g. Hydroderm Omega, Excipial U Lipolotio)
> do not constantly change products - maintain continuity
> keep the pH value in the weakly acid area

Best regards, Larry

Edited 05/02/12 21:32

I had RT done at Dr Seegenschmiedt's clinic
Here's a recap..
Mon April 23,2012.
I arrived at the Clinic at 10:30 AM for my 11:00 appointment with Prof. Seegenschmiedt. The facility seemed smaller than i expected however it was very bright, clean and inviting. After passing some blooming Cherry Trees I entered the front door and was greeted by his smiling receptionists, given forms and went into the bright and airy waiting room and filled out the forms. I returned the completed forms and shortly after the Professor came in and greeted me with a warm welcoming smile and a firm reassuring handshake. The first thing he did was to give me a pin with a flag on it. He then brought me to a map he had on the waiting room wall and asked me to locate my point of origin (San Francisco CA) and stick the pin into that spot.
I did it and from there we went upstairs to his office.
The office was large and had a warm feeling to it. We sat down and after some brief small talk he went into his examination, diagnosis and consultation.He started with my feet and carefully examined them to see if there was any sign of Ledderhose. After palpating both feet i was relived to hear that they were okay.
He then checked out my hands and to my surprise he found more evidence of the disease than I'd expected. I originally thought my left hand was affected just in the area between my thumb and index finger (#'s 1 & 2) but he felt around and discovered that my right hand was involved more than my left!! Then he mapped out the areas where he found cords and nodules and then scribe the area to be radiated. It included my entire right palm except for the thumb and web up to my index finger, and on my left hand he scribed out the area from my thumb and index leaving out the rest of the palm.
We completed some more charts which included a measurement of my ability to spread my fingers apart as far as possible and match it to the other hand, and then he took a xerox copy of my hands with the diagrams painted on them.

So after some further discussion about the risks and reassurance of the procedure, I left his office and was scheduled to return that night at 7PM to start the radiation following his recommended 5 day treatment of 3 gray/day to return in 8-12 weeks for a final 5 day 3 gray/day treatment for a total of 30 gray in each hand.
I returned at the appointed time waited briefly in the waiting room and then was called called to come down. I walked down the 35 spiral steps into the radiation center and was greeted and brought into the "Laboratory" After a little clarification about what needed to be done the procedure was started and finished in about 38 seconds per hand. I went out to the receptionist and given my appointment for the next day at 7PM.

Tues April 24 2012
I arrived to the waiting room and at this time i met with Gary from New Zealand and Frank from Germany. We chatted and compared notes and then one by one were called down to get zapped. Everything went well without a hitch for remaining 4 days.
Thu April 26,2012
Today i met again with Dr Seegenschmiedt. We went over the diagnosis and procedure and talked about what to expect from the treatment. He said that i may feel some slight tingling or redness in the area but that it's normal and will mitigate over time. He did indicate to me that this was not a cure but that it will stop the progression of the disease by as much as 90% in my case. This of course is very reassuring.
Then he gave me my homework assignment which consisted of a couple of sheets with charts and hand diagrams where i am to record the activity and changes i see in my hands on a monthly or quarterly basis. He didn't want a diary he wants a "Yearbook".
Fri April 27,2012
Final day of treatment was at 11AM. I arrived was treated in the same 38seconds per hand and then met with the accountant to pay for the RT. I gave them my Visa and the machine wouldn't accept it. The same thing happened to Gary the day before. So i had to go to the ATM and get cash. I returned, paid my bill and went on my way.
The rest of the weekend i stayed in Hamburg and enjoyed the sights of this lovely city.
Initially i was very anxious prior to my treatment but thanks to the people in this forum that i talked to on Skype and i met at the clinic and the reassurance from Dr Seegenschmiedt i feel confident that i made the right decision and will return to Hamburg of the second round.
April 30 back to San Francisco. My experience was positive and i'm confident i made the right decision and feel assured that the progress is mitigated. As of today is May 2, 2012 i have seen no visible changes in my hands or skin..
ON THE BRIGHT SIDE:
When i walk around in the dark all i have to do is lift up my arms and open my hands and the glow from my palms lights up my way. Also, when i want some hot tea, i just have to stick my finger into my cup, or wrap my hands around it, and the water heats in seconds! LOL. IT'S ALL GOOD

RichSF.

That is so funny, I burst out laughing. Thanks for the step by step report. I hope your outcome is as good as mine has been. 3 years after RT and no new growth. As time progressed my nodule disappeared and the cord receded into my palm. About 2 weeks after the first round of RT, I did have a little tingling and pain in my palm . . . like the DD was telling me it did not like being messed with. That went away in a couple of days. Good luck with the next round!

Lori

switcombe:

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RichSF:

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ON THE BRIGHT SIDE:
When i walk around in the dark all i have to do is lift up my arms and open my hands and the glow from my palms lights up my way. Also, when i want some hot tea, i just have to stick my finger into my cup, or wrap my hands around it, and

LOL, thanks so much for the BRIGHT report! It made my day.

And thank you, Larry, for the info on the ointment.

Something else I'm wondering about. Why do you have to have a second course of radiation treatment if no new nodules or cords appear?