Hi all,

I need some input and advice. I had my consultation appointment today with Dr. Pauling Chang-- I was referred to him by Diana of this forum. Diana was the first DD/DC patient he had treated although he's an experienced radiologist. He did lots of research on DD prior to treating her. I liked him very much; open, easy to talk with, good listener, took time to answer questions, and willing to look at any research I might come up with.
Based on his research he wants to do what he calls the 'German protocol' which is 3 gy X 5 days of treatment with a return in 3 months if necesary. I'm not sure if it will work or if my case is too advanced, etc. but I'm willing to take the risk to see if I can get some relief.

My questions/problems are:
1. Newman posted, "Prof. Seegenschmiedt was doing side by side protocol 7X3 Gy or 2 sessions of 5X3 Gy"-- Is there any documentation on this or any reason for me to push for 7 sessions?
2. The biggest problem I have is that Dr. Chang does not think it necessary to do an MRI or CT scan. He did a CT scan on Diana and found it 'of no use to him whatsoever in planning treatment" and thus doesn't want to do an MRI for me. I told him about the other places in the US and Germany using MRI and CT scans and he invited me to send him copies of the research or website links. My concern is that since he isn't experienced in DD at all, he might not radiate enough area or go deep enough without an MRI and also that perhaps because of something specific to Diana's hands such as limited disease (sorry to use your name so often, Diana :-), he wasn't able to see the disease. Why do other docs use these tests and why can some patients see the disease on their own MRIs? I'd appreciate any links to research articles that I can forward to him.

It'd be way more convenient for me to have treatment here at home rather than flying to Scripps or Germany.

Thanks for any assistance.

Diane

Hi Diane,

I was convinced that the protocol used on my hand by Dr. T at Scripps was right for me. It was 1.8Gy M-F for 2 weeks in a row - 18Gy total. He used electron radiation. In this protocol, RT is not scheduled again. I asked Dr. T if RT could be used on my hand again if DC shows up again. Without hesitation, he said it could be used again because it is a very weak protocol. He also is confident that it will not be needed again.

I could see or feel no side effects until 4 weeks afterward when not more than 10 little peeling skin spots appeared and they was gone in 5 days. The peeling spots were scattered and about 1/4"x1/4". The most notable thing to me was that they were mostly around the edge of my hand but 2 or 3 appeared over some wrinkles in my hand. It makes sense to me that they were around the edge because the radiation has less tissue to go through there. I alternated used Vit. E cream and lanolin. I use that anyway because I have very, very dry skin.

When I was pondering whether I should get NA or RT, I asked Dr. Denkler. He contacted someone in the radiaology department at UCSF where he is affiliated and teaches some courses there. He indicated to me that he thought any doctor trained in radiology would be able to do RT. The doctor at UCSF apparently has not done Dupuytren's before but understands the concept and would do it.

Here is the email exchange with Dr. Denkler about RT. As you can see, he left it completely up to me. I opted to have NA done first and then RT at Scripps because it is so much closer to where I live.

Date: Mon, 2 Mar 2009 16:16:17 -0800
Subject: Re:
From: floraj . . . . . .
To: kdenklermd@hotmail.com

What is your opinion about radiation therapy for early stage dupuytren's? From what I have been able to find out, it may be an option for me. How does one determine which one would be the best option?

Flora Johnson

On Tue, Mar 3, 2009 at 9:18 AM, Keith Denkler <kdenklermd@hotmail.com> wrote:

Dr. Alex Gottschalk has agreed to see Dupuytren’s patients at the UCSF Mt. Zion campus/Cancer Center, 1600 Divisadero. The new patient scheduling person is Krshna Munoz at (415) 353-9807.

From Dr, Sbeed on Radiotherapy for Dupuytren's


I should have put this on this site before, but here is is now so others in the Bay Area can have the contact information. I hope this helps. You will decide what seems best to you. When you do, it'll be the right thing for you.

Flora

Hi,

I did have an MRI and it is expensive. If I can figure out how to attach pictures I will send a copy of my MRI and my hand before, during and after RT. I am not that computer savvy, but I am working on this.

I believe he had me do an MRI, because as a oncology radiation doctor it was normal standard procedure for him, and also because he wanted to be exactly sure how deep and wide to go. I am glad I had it done, but after going through the procedure I believe a CT scan or other less expensive x-ray might have accomplished the same thing. You live and learn.

I had the 5x3 procedure with 6 weeks in between. I have a few side effects like getting twinges in that area when I pick up or grab something. My skin appears red in the radiated area when it is under warm water. Kind of spooky. Dr. Crimaldi said that the RT continues to work for 4-6 weeks after RT and that is why I have to go back for a check up to see how my skin is. I put on a gel, same as Flora, every day and night and I keep it moisturized. I too can go back and have it RT'ed again if need be. My nodule continues to reduce and you can hardly see it anymore.

Lori

Edited 08/27/09 20:38

I had 5x3 twice with the only pre test being Dr Goode feeling my affected hand. I had been watching for 3 years and thought it was now or wait for invasive so I went for it with concerns about cancer in the family and being only 48. Early signs are very good and hopefully I'll be saying similar in 30 years time - respect to Dr Goode, Poole and the NHS, not forgetting this site for the education Cambidgeshire, UK.

Edited 08/27/09 22:52

Aussie calling.I agree it is a good idea to document any progress right from a early stage. A simple method is to use the photostat copier and place a towel over your hand holding the hand down on the glass with a firm force .When I first met Prof.Seegenschmiedt he did exactly this. He palputated my hand and then with a pen marker ,he used dotted lines to identify the nodules and lines on any cords. It is a simple procedure. Have your partner carry out the examination ,as it is difficult to identify everything when you self examine. Date the copy and identify each hand . This procedure was done each time I visited Essen. The digital camera and a ruler were used for recording measurements on my feet.

Edited 08/30/09 11:47