Hi everyone,

Well I finally got an answer from Peter Mac and am pleased to say that Dr Greg Wheeler is seeing me next Tuesday.

Stomo, you'll be seeing him before me (Friday?) so I'll be really interested to hear what happens. I'm hoping that by the time I see him, he'll be ready to measure me up for a shield and with any luck, we can organise for a time for me to come down for my RT!

And I can't wait. My nodules, cording and contracture are definitely worsening. I don't think I'd like to be leaving it much longer.

Cheers,

Teresa


Edited at 08/21/07 11:59

Hi Adelaide Calling. I wish to report that last week after obatining a referal from the General Practitioner I had an appointment with one of the 6 Oncologists at the Royal Adelaide Hospital . He was aware in his words 'that most of the data. regarding the use of radiotherapy in the treatment of D.D was coming out of Germany'He examined both my hands and also one of my feet ,which has progressive ledderhose within the instep .I took heaps of information along that I had downloadedfrom the D/S website. He was aware of the process used .It was a positive result. I will be in Germany and have made an appointment to see Prof.Seegenschmiedt in early September to have an assessment. A further appointment has been made at R.A.H. The Oncologist was a little concerned about the cancer risk even though I am 65 Yr and reasonably fit. However he did say they did treat patients with low doses for other non maligant tumors.He was prepared to give it a go selecting one nodule and see what happens.So it all depends on the advise I receive from Prof. Seegenschmiedt. I'll keep you posted.

Hi All,

Went to Dr Greg Wheeler today at Peter Mac in Melbourne. This was my second visit, first one he needed me to convince him I wanted radiotherapy and was aware of the risks.

Today he briefly went back over the risks, and did in fact mention that maybe he was overstating them a little. We evetually decided between us that he would put in process a proper treatment protocol and run the program past the ethics people etc. Then if he is successful we will start treatment early next year. I have another appointment in 6 months, February 2008, but if my DD progresses markedly in the meantime I will get in touch and we will discuss the options available at that time.

And I am pretty happy with this situation. I am going to get a better researched treatment as he will have some work ahead of him to get it by all the different people in the hospital and also have the option of rushing it along if my DD accelerates. No downside as far as I can see at the moment.

And you two going to see Greg next week, please post your results?

Best of luck,

Tomo

Quote:

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Hi All,

Went to Dr Greg Wheeler today at Peter Mac in Melbourne. This was my second visit, first one he needed me to convince him I wanted radiotherapy and was aware of the risks.

Today he briefly went back over the risks, and did in fact mention that maybe he was overstating them a little.

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What would be helpful is comparisons to other things such as x-rays, whole body scans or sunbating/sunbeds etc.

I broke a collar bone yesterday and was told to have a couple of x-rays. The guy took one and that clearly showed a break so he said that was all that was needed because he didn't want to expose me to unnecessary x-rays. This made me think of radiotherapy and dups and how less powerful is the low level radiation used compared to an x-ray

Edited at 08/25/07 00:07

hi,there.i have a dd and looking for a doctor in sydney area who can do NA.Any help is
greatly appreciated..thanks