Hello,

I have been searching the Forum to ask some questions of those that have been to Scripps, Dr.T. for RT. So far I have not received any responses, therefore composing this thread. I called Scripps to get information on protocol, etc. and was surprised to be told Dr.T only does one extremity at a time, regardless of if you have DC in other hand or LD in feet. Plus, he just does one treatment of 3 x 5 GY's, then evaluates you a month later to see if you need more. I asked, "How often do people need more?" The answer, "Just depends."

I understand he is an excellent doctor, so I am wondering if he is discovering that less is enough? But also have not read any research that supports success with just 15 GY's.

My question is if you have been to Dr.T did you receive more than 15 GY's? And, if you don't mind please share your experience.

Thanks!

spanishbuddha:

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I have not been to Scripps so cannot help.

But, I have just had one hand radiated with one series of 15 x Gy, and was astounded at the result. Instant reduction in symptoms. Took me by surprise as after treating my other hand a couple of years ago, 2 x 15 Gy, I have been less than impressed by the results and even unsure as to whether it made any difference.

So I asked ProfS in Germany whether I would need to do the second series in November/December. Still time for things to change and make a choice. He said that in a study done a few years ago with those only having 1 series of 15GY there was a 35% relapse rate within 3 years. The other way of looking at it I suppose is for 65% there was no relapse and they joined the pool of 85% or more for who RT has slowed/stopped progresssion after 5 years.

He will leave the decision to me but suggests a consultation at the time.

Hi, Nan - are there really that many women who report painful side effects for 6 months after RT? Most of what I've read is in line with my own experience - slightly dry skin and maybe the hands feeling a little 'hot' for a week or so. My hands were really achy before RT and that calmed down considerably afterwards. I do have on & off episodes of sore nodules but I think that's more due to the disease being active than the RT. My nodules popped up and grew fast over the 8 weeks between the time I was diagnosed and the time I started RT, and if there's been any progression since, it's been very, very little. I'm encouraged to hear Spanish Buddah's story, as I'd definitely have one more round of RT during an active phase once a year has passed.

Hope you're getting closer to making a decision about having RT!