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New Update
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09/19/2012 22:37
Elin 
09/19/2012 22:37
Elin 
New Update

Hi Everyone,

Just wanted to update everyone. I started my RT on Monday at Scripps Hospital in San Diego. Everthing is going well and Dr. Tripuraneni is very nice and seems very knowledgable. I had my third session today and will finish on Friday. I will return in a month and be checked to find out if I need another round. One more good thing... my insurance is covering the procedure. Yeah!

Well, that's all for now. I will keep everyone posted.

Edited 09/20/12 01:39

09/20/2012 00:28
LubaM. 
09/20/2012 00:28
LubaM. 
Re: New Update

Elin:
Hi Everyone,

Just wanted to update everyone. I started my RT on Monday at Scripps Hospital in San Diego. Everthing is going well and Dr. Tripuraneni is very nice and seems very knowledgable. I had my third session today and will finish on Friday. I will return in a month and be checked to find out if I need another round. One more good thing... my insurance is covering the procedure. Yeah!

Well, that's all for now. I will keep everyone posted.
That's interesting. I had RT done at Scripps with Dr. T. in November 2009. It appears you had only five sessions done in one week, right? I had two consecutive weeks, five days a week, for a total of ten treatments, for nodules on my right foot and left hand. I guess he changed his protocol ?

My treatments were successful, nodules have shrunk, and there are no new nodules in the treated areas. Hope your RT is successful as well.

09/20/2012 14:24
Elin 
09/20/2012 14:24
Elin 
Re: New Update

Hi Luba,
Thanks for your reply. I am getting 3GY's for five days. Maybe you were getting 2GY's?? The doctors seem to be changing their protocal all the time. I feel a little like a guinea pig!! At least there are more doctors and hospitals who are offering RT.

Did your nodules get hard after your treatments? Mine are hard and sore. Also, did you have nodules in your feet first or your hands. Sorry for all the questions, but if it weren't for this forum I would never have known about Ledderhose or the treatments available.

Thanks

09/20/2012 15:08
flojo 
09/20/2012 15:08
flojo 
Re: New Update

Elin,

If my primary insurance were Anthem Blue Cross, it would pay. But Medicare is Medicare. I'm hoping they will pay. If they don't, we still need to keep trying.

You're right about the different protocols being used for RT for Dupuytren's. Three seem to be standard - (1) 3Gy x 5 consecutive days followed by another round in about 3 months; (2).3Gy x 5 days given within 2 weeks. Mine is being given MWF, MWF, and M of the 3rd week. (3). 2 Gy x given 5 days a week for 2 consecutive weeks. As far as I can tell from reports on this Forum, they all have successfully stopped progression of Dupuytren's and Ledderhose.

Looking forward to your reports over the next few months. I found that the results continued to develop over 3-6 months. My RT of 2Gy x 5 days for 2 consecutive weeks still has my DD arrested after 3+ years. Yippee! DD was very aggressive on that hand.

09/20/2012 15:29
Christl 
09/20/2012 15:29
Christl 

Re: New Update

Elin, just finished my first round with Prof. S last week in Germany. He will do second round in 3 month, so I have to come back again. So far I feel nothing different. I also got 3Gys in 5 days. Interesting that DR. T wants to see if you need a second round. It is understood with Prof. S that there will be a second round, again 3gys in 5days. I also have/had the problem in both hands and had RT in Germany last year. The treatment worked, so I am hoping it will work on my feet as well, it better, walking is already a challenge.
Best of luck to you.

Christl

09/20/2012 17:49
Lanod 
09/20/2012 17:49
Lanod 
Re: New Update

Elin, I wish you well for every success with your treatment!

Flojo, if you don’t mind me making one important correction to your post?

You say one protocol of three for RT for Dupuytrens is:

2) 3Gy x 5 days given within 2 weeks (yours: MWF, MWF, M|)

I know this is simply a typo but what you meant to say was (I assume):

2) 3Gy x 7 days given within 2 weeks (yours: MWF, MWF, M|)

I am emphasising this (I really hope you don’t mind) because there is no published report on a 15Gy radiotherapy treatment for MD or ML. Reports on RT treatment for Dupuytrens go back to 1938.

Patients should ask their RT doctors on what basis they propose a specific dose, in other words on what experimental/scientific evidence are they basing the RT dose on. Again, there is no evidence to say that a 15Gy treatment is sufficient to treat MD or ML.

Can someone please correct me if I am wrong. I am due a second treatment of RT (I had one 15Gy session 10 weeks ago and I expect another15Gy session soon) and I am telling my RT doctor that 1 single RT treatment of 15Gy is not acceptable.

Lanod

09/20/2012 20:14
RichSF 
09/20/2012 20:14
RichSF 
Re: New Update

Hey Christie
Tomorrow i finish my second round of treatment with Dr S too bad i didn't know you were here perhaps we could have hooked up...It's gettin cold now.. there was a 15 minute thunder storm yesterday with lightening and marble sied hail stones!! I suppose you are in CA by now.
Elin...
Good luck on your venture u r doing the right thing.. I was nervous onmy first round but now it's a stand up routine and i'm happy with the results.... which are no results!!

With regards to treatment protocols, Dr S says:

"Although I have great respect for the radiotherapy institution of Scripps La Jolla and their doctors I have my sincere doubts about the applied RT concept,
as there is a major difference if someone uses 10 x 2Gy in 2 weeks than 7 x 3Gy in 2 weeks (if you take "the biological modelling" into acount!), i.e.

BED (10.0) for 10 x 2Gy --> 24.00Gy versus BED (10.0) for 7 x 3Gy --> 27.30Gy versus BED (10.0) for 2 x (5 x 3) Gy --> 2 x 19.50Gy --> 39.00Gy

BED (3.0) for 10 x 2Gy --> 33.30Gy versus BED (3.0) for 7 x 3Gy --> 42.00Gy versus BED (3.0) for 2 x (5 x 3) Gy --> 2 x 30.00Gy --> 60.00Gy

The decisive point - besides dose - is the correct palpation and detection of ALL DISEASE in the hands and feet to begin with ...

Best regards from Heinrich "Hank" The Professor Seegenschmiedt

----------------

P.S.

There is only one single study which has been published to support this dose concept from
Köhler et al. (1984) with only 31 pts. /Radiobiol Radiother (Berl). 1984;25(6):851-3.
[Radiotherapy of Dupuytren's contracture].

[Article in German]Köhler AH. /PMID:6528027"

I'm not sure what it all means but he has his opinions. I do know that he is a strong advocate of the importance proper diagnosis through his experience pf palpating thousands of hands...

Anyway tomorrow I'll have my 30 GY and i'm optimistic.
By the way here's a photo of me and the Doc and a portrait i did of him...My hands are still working and glowing in the dark again!!!

Edited 09/20/12 23:32

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Dr. S Portrait .JPG Dr. S Portrait .JPG (13x)

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09/20/2012 20:55
flojo 
09/20/2012 20:55
flojo 
Re: New Update

Lenod, CORRECTION. It is 3Gy x 7 days in a two week period for a total of 21Gy. Thanks for quickly
catching my mistake!

09/20/2012 22:07
Elin 
09/20/2012 22:07
Elin 
Re: New Update

Thanks everyone for your input. All these different protocols are making me dizzy. Hopefully all will turn out just fine. It is encouraging to obtain all this information from everyone. This is how we all can make better informed decisions! I will keep you all posted.

Rich, great picture!

09/20/2012 23:34
flojo 
09/20/2012 23:34
flojo 
Re: New Update

I asked Dr. Katerelos what specific research/study he primarily used and it was the study done by Professor Seegenschmiedt that had 2 groups. I haven't read the study, but my understanding is that one group was treated with 3Gy x 5 days with another round of 3Gy x 5 days after about 3 months. The other group was treated with 3Gy x 7 days in a 2 week period.

Dr. Katerelos uses electron radiation, proton radiation, and photon radiation depending on the condition. LLUMC radiation department uses whichever type of radiation is best for whichever condition. This is not a fly-by-night outfit. It is a teaching university hospital for all kinds of conditions, diseases, transplants, and you name it. Dr. K knows radiation and he said the 3Gy x 7 days is enough. I am very comfortable with the 21Gy total dose. Scripps protocol of 20Gy total dosage worked on my right hand 3 1/2 years ago. The disease is arrested and it was very aggressive. I have no doubts that the 3Gy x 7 days will be successful on my left hand. Less worked for me. If radiation works, less is better in my opinion.

Dr. Katerelos knows how to palpate for nodules. After all, he palpates for tumors, cysts, nodules, and lumps of all kinds every day. He was very, very thorough.

I respect all of these specialists for treating our disease. They do so against traditional medicine. I salute them all!

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