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New here but not to the disease - hello wolfgang
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06/25/2014 18:38
brucergoldberg 
06/25/2014 18:38
brucergoldberg 
Re: New here but not to the disease - hello wolfgang

I am seeing the head of oncology tomorrow at a hospital in dallas. He said that he can do the whole thing for me. I have a 12:30 appointment with a hand guy first, then a 2 pm with an oncologist. I have seen neither before so i printed off the paperwork you kindly directed me to and i will bring it in with me tomorrow.

i wonder how they can see through my skin grafted foot

06/25/2014 19:12
moondanc 
06/25/2014 19:12
moondanc 
Re: New here but not to the disease -

brucergoldberg:
I am seeing the head of oncology tomorrow at a hospital in dallas. He said that he can do the whole thing for me. I have a 12:30 appointment with a hand guy first, then a 2 pm with an oncologist. I have seen neither before so i printed off the paperwork you kindly directed me to and i will bring it in with me tomorrow.

i wonder how they can see through my skin grafted foot


Good luck! When I had RT done--I think it was 2009-- I got into a whole discussion here and elsewhere about whether an MRI was a good idea to be able to see the extent of the disease. You might want to discuss this with your docs. My radiologist didn't initially agree to it but finally relented. I spoke with Dr. Eaton about it and he didn't think it was necessary so I didn't have it done. There are some threads here on it if you want to search.

Here's one of them:
http://www.dupuytren-online.info/Forum_E...tion-0_531.html

Edited 06/25/14 22:13

06/25/2014 19:57
spanishbuddha 

Administrator

06/25/2014 19:57
spanishbuddha 

Administrator

Re: New here but not to the disease - hello wolfgang

ProfS does an interview consultation, questions about health, history, symptoms, timing, and then does a physical examination, before deciding whether RT is appropriate or not. So for example when I had my LH done he declined to treat my RH even though there were symptoms. His physical examination determines the extent of the disease and with some added margin the area of radiation. You want to minimise this as RT is damaging with some risk, and is a one shot chance (mostly).

It seems from your posts you are doing all of this yourself, with some reliance on the experience of a radiologist to interpret some 'material you found on the internet'. I don't want to be a party pooper, as RT is proven to be effective for 85% when done at the right time as appropriate and by a skilled radiologist with experience of DD/LD.

Have the consultation with the radiologist, take the documents we have provided, ask him to do his own research on PubMed and equivalent. Also see a hand physician and get an assessment on the extent and stage your DD is in. Perhaps ask the two to converse (unlikely), but less haste more speed seems in order.

To confirm the protocol is 5 doses of 3Gy done over 5 consecutive days (3Gy each day), then repeated approximately 8-16 weeks later. This gap varies, determined by evidence and for me ProfS recommended 12 weeks. Your radiologist should find the latest research on this. He could talk directly to ProfS.

06/26/2014 21:41
brucergoldberg 
06/26/2014 21:41
brucergoldberg 
Re: New here but not to the disease - hello wolfgang

just got back from the oncologists in Dallas - guess what? The head of oncology at texas oncology had a consult today with the doctor in Oklahoma while i was there and Dr. Terry told him exactly how to do the treatments. Today i had my first treatments. The best part about this is , i was the first patient at texas oncology to do this and they are going to add this to their list of diseases to treat. And the second best part is i don't have to drive to oklahoma next week to have this done.

He is starting with my hands, and then going to do feet next because we are going on vacation and i won't be able to keep my foot off the beach :9

and this is $23,000 to do folks. thank God for insurance

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07/02/2014 23:47
brucergoldberg 
07/02/2014 23:47
brucergoldberg 
Re: New here but not to the disease - hello wolfgang

Hi everyone, update. I just finished my 5th treatment at Texas oncology here in Dallas. Dr. Swartz is the head radiation oncologist and has taken great interest in my case. The staff there could not be more wonderful. Its great i only have to drive 30 minutes as i live in Dallas and this is just down aways as opposed to going to oklahoma city.

My hand seems to of settled down a little bit pain wise. Still not 100% but definitely better. The doctor says it takes about 10 days before the cells start dying off from the treatment so i don't know if I'm just having a better day or its the treatments. if anyone needs their info please write me. Wolfgang, please put his information in your doctor list. He follows your exact protocol and he and the guy in oklahoma are buddies now.

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