Today is day 4 of my RT treatment with Dr. S. in Hamburg, so I thought I would report in. This is my second RT -- I had the first round done at Scripps in 2/2010, but had a recurrence in January.

The RT Treatment:

I had my initial appt with Dr. S. Monday at noon, with my first RT session immediately following. My first reaction after meeting with Dr. S. was -- "I will never get medical treatment in the U.S. again!" He met with me for over an hour, and did an extremely thorough exam of both my hands and feet. (In contrast, none of the radiologists or hand specialists I saw in the U.S. spent more than about 20 minutes with me.)

Others have said that Dr. S. was skilled at finding non-visible disease, which is one of the main reasons I decided to fly to Germany to see him. (I live in the U.S., on the East Coast.) This was certainly true in my case. When I received the RT last year, my doctor had identified 4 nodules and several cords extending from them. Then I found a new nodule in Jan, which is what prompted the retreatment. So I went to Germany thinking I had 5 nodueles. Dr. S. found 16 NODULES, not to mention a bunch of cords I didn't know I had. He found disease on the fingers and palm of all 4 fingers and thumb of my right hand, and 3 fingers and thumb (all but my little finger) of my left hand. He also found a small area on my right foot that he said was an early stage of the disease (not yet needing treatment).

Since the disease is pretty much all over my hands, he decided to treat all of my right hand and all of my left hand except the little finger area with 5 x 3gy. I am in an awkward situation, though, because now part of my hand will have been treated twice (for a total of 35 gy) and part will have been treated just once, for a total of 15 gy. He said that for this reason he would not do the normal follow up of another round of 5 x 3gy in 3 months. Instead, he wants me to report back in 3 months and 12 months by phone or email to let him know if there are any changes. If I have progression, he will re-treat just the areas showing progression. He said he likes to leave an opening for a possible post-surgical third RT treatment later in life if the disease ends up progressing to the point where I need surgery.

My overall impression of the treatment here, as opposed to Scripps where I received it previously, is that a lot more time is spent with the doctor upfront in the exam, mapping, and documentation of the disease. The treatment itself is less elaborate and more low tech (for example, at Scripps they made custom lead templates to shield the untreated area - here, they just use pre-made lead bars, which seems less precise to me. This might have made me more nervous if it was my first RT experience, as initially I was very scared about the idea of RT. At this point, having been through RT once before and also having seen the progression of this disease, I'm feeling a lot more scared of the disease than I am of the RT. So I found myself with a much more blaise attitude, like, "Here's my hand, whatever... -- just zap this thing."

I have my last treatment tomorrow morning, then leave for Paris where I will spend the weekend before flying home.

Maddie

*See Next Posting for Hamburg Tips*

Thanks for your post on my other thread, Maddie. It's very interesting to read your story about your experience in Germany.

I have read all sorts of conflicting reports on RT. One site I saw said that RT could cause later complications if surgery is needed. However, I'm 40 and I'm not sure that I would consider surgery except as a last resort. I'm also banking on some combination of RT, NA and maybe Xiaflex to keep me going to age 60 or later and then hoping that there might be a new treatment by then. Did Dr. Seegenschmiedt walk through the potential pitfalls of RT with you?

I am also interested in the idea of the cause of DD - knowing obviously that there is a genetic component. I played trumpet, piano and drums for years and as a programmer I type constantly and very heavily. I see a lot of people on this site who are either musicians or rock climbers and have DD. I'm wondering if DD might be some sort of inflammatory response to overwork of the hands. Do you have a background in some activity that might have led to DD? It seems like there's not a lot of research or information available along those lines.

Bill

Hi Maddie
I enjoyed reading your Hamburg experience, even though I'd already been! I also used the Marco Polo Hamburg guide and found it very good.
The way I handled the dinner dilemma is to locate a handy Aldi in Fuhlsbuettel and have a pre-made salad each night with some tinned tuna thrown in, and some yummy German yoghurt as a sweet treat. I had a bigger meal at lunchtimes while out.
The tap water is not recommended in Germany, so I got large bottles of mineral water from the supermarket each day
I agree the experience was made more interesting by having a reason for being there besides straightforward tourism
Hope you're feeling better
All the best
Di

Maddie:

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Continuation: Hamburg Tips

This is my first trip to Germany, and I have really been loving it. Everyone has been great. However, I heard from several people before I came that it doesn't matter than I don't speak German because "everyone speaks English," and that is definitely not the case! For the most part people at the hotel, taxi drivers, and staff in a lot of the restaurants (but not all) have spoken English. But when wandering out of the typical tourist terrain it has been much more variable. I have been able to get by with just a few words, but if I were staying longer I'd definitely try to learn more.

I decided to stay at the Courtyard near Hamburg Airport, mostly because I have hotel reward points here. It is a nice hotel and I would stay here again. The clinic is about 1 1/2 miles north of here. Travel options are taxi (about 7 euros), Metro (take it one stop north to Langenhorn Markt, then it's about a half mile walk), or walking. I've done all three, depending on how much of a hurry I'm in and what the weather's like. The weather was really nice (light jacket weather) my first several days here, but has since gotten colder and grayer -- not below freezing, I don't think, but close.

One thing that was very important to me was finding a way to eat for an entire week without going broke. The only options at the hotel, as far as I can see, are the bar/restaurant, room service, and the in-room mini-bar. There is no mini-mart here or even any vending machines that I've seen. This means that food and drink in the hotel is enormously expensive, and I've tried to avoid it as much as possible. There is a small frig in the room that houses the mini-bar items, and I took everything out and stocked it with my own food and drink from grocery stores. The most conveniently located stores I've found (assuming you don't have a car) are the stores at Langhorn Markt one Metro stop north. There is an Edeka that I like right above the Metro station. There are also a ton of other stores in the Langenhorn Markt area if you need to pick up any items you didn't bring (I got a few dishes and an electric tea kettle to use in my hotel room -- definitely beats 3 euro cups of tea.)

Oh, and one other thing -- I wasn't able to find a good, compact guide to Hamburg in the U.S., but was able to pick up a really good one in the Hamburg Airport bookstore. It is a Marco Polo guide -- one of the few books in the store that's in English - and is very compact with a lot of useful maps. I've been carrying it with me all the time.

That's enough for now -- but please let me know if you have any questions! Overall, it's been an excellent experience and not as scary as I had feared. And a wonderful opportunity to experience Germany from a real life, not just tourist, point of view.

Maddie

Hi Newman
Thanks for the clarification and apologies if I've caused confusion about the quality of German tap water. I'm not surprised the water is up to a high standard in Germany. I thought it tasted a bit strange, but that could have been just the different mineral content to what I'm used to in Sydney where we have quite 'soft' water.
I also stuck to bottled water the last time I was in Adelaide! It's all a matter of taste and what you're used to, I guess!
All the best
di

newman:

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Hi Di.
Where did you get the suggestion not to drink tap water in Germany? I've never heard of this. I've just searched the net and advice is that the tap water in Germany is of a higher standard than of most bottled water. Germany is the best economy and has the highest standard of living in Europe so to have water that is not drinkable would not be acceptable. Bottle water has become a fad even in Australia. At the moment I am visiting Garmish -Partenkirchen Barvaria and I wish we had this quality of water back in Adelaide Australia.Finally you will always get most food you want at the Bahnhof. (railway station)
Regards from an Aussie.

Pinetrees:

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This is a question for any or all of you...I see your radiation protocol with Prof. S is 3G for 5 consecutive days, with 3 months between treatments. Are there only 2 treatments total? I would like to get as much info as I can before I make my final decision on treatment...by the way..I have no idea how much or little radiation that amount is! I have LD and DD, for 6 years. I believe both to be slow progression as I have no limitations with either...nodules and cords on the hand...1 nodule for each foot..many thanks...Mary