Hi Lori. I spoke with Dr. Weiss. I called the numbers on this website. I'm not sure the numbers are exactly correct on this website but when I explained what I was looking for, they transferred me to the correct place. Dr. Weiss was trained in Germany and said she had been doing the procedure for around 1 year. She seemed to think this worked and that it softened and shrunk the nodes.

Will your insurance be paying for this? Have you gotten that far?

Good luck to you, Diana

I checked with Scripps and they said that Medicare pays for RT, but they submit a request to Medicare for authorization and I'll know before I get the RT if Medicare approves. So as far as I know, Medicare will pay for my RT and my supplemental coverage is based on whether Medicare will pay or not. Medicare pays/paid for my NA and Dr. Denkler billed that.

Diane and Newman, after your questions, I'm wondering about conservative RT coverage on areas affected by Dups. My inclination was not over-radiate. After all, it is radiation. Now I'm wondering if radiating the margins might not be the thing to do much like when they do a biopsy for skin cancer, they try to get "clear margins". Conceivably, if there is active Dups left in nearby tissue, is it likely to progress? On the other hand, stopping any of it from progressing is a plus.

It's never a simple solution, it seems. I'm convinced that I need RT, now it's whether to ask for RT outside the areas that are clearly Dups. I have a hard time telling my oncologist his job, but it is my body. He knows the effects of radiation and, though minimal, there ultimate risk of cancer because of the radiation itself. Dups is better than cancer.

Hm-mmmmmm. Something to ponder for sure.

Targets & Margins,

Thank you for taking the time to put in your 5 cents. It's worth many times that to me.

Dr. T circled in 4 different targeted areas encompassing groups of nodules on my palm. I thought he was a little conservative with narrow margins. His position is to not over-radiate. I respect that. It is his specialty. He knows the effects of radiation.

The circled targets were all about 1 inch x 1/4-1/2 inch. The gaps were from about 1/4 inch, 1/2 inch and 1 inch between the targets, but the area of my palm not targeted at all was at least 50%, I'd say.

After I made my last entry about RT coverage, my friend left a message about her radiation for cancer and what her oncologist said. She knows that hers was different and much stronger than non-cancerous radiation therapy, but she had 2 points that will be helpful for all of us to ask about. She was told: #1 - radiation can never be done on the same spot again and #2 - radiation itself causes scar tissue. I will definitely ask about both of these things.

My initial thought, though is that hers was a really high dosage following chemo for breast cancer, but RT for Dups is a very low dosage - total of 10G over a two week period for me. Never being able to have radiation on the same spot again would probably also apply to Dups RT, I'm thinking. Second, I think the low dose would not be as likely to cause scar tissue like a really high dose for cancer would.

I don't know how either of these points applies to Dups RT. Does anyone else have information about this?

Please find my comments below

Quote:

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...
#1 - radiation can never be done on the same spot again
Comment: depends on total dose. If had been exposed to 10 Gy on your 1st treatment you can have another 10 Gy later. Usuallly an accumulated total of 30 Gy should not be exceeded.

#2 - radiation itself causes scar tissue.
Comment: true but typically not an issue when treating Dups.

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Hi Matt,

You said;

Moondanc, you mention you had Collagenase injection and it was not successful? Bummer! care to provide a little detail? How did it compare to the prior NA on the same finger?
I'm really hoping and praying that collagenase proves more effective than NA, since I'm not aware of any other options at this point.

I had NA on just one finger, PIP joint with Dr. Eaton- whom I really loved-- in 2004. By 2007, it had started to curve again. i was accepted into the Collagenase trials and had the injections in Dec 2007. It worked as far as straightening/releasing the finger--ring finger-- but it did NOT deal with the adhesions on my palm at all and they remained and as we all know== continued to grow. The hype on collagenase is that it is supposed to last longer than NA-- that has not been my experience at all. Feel free to PM me or ask any further questions you have. I see no particular advantage to collagenase at all since it doesn't deal with the palm and, in my case, the DD has returned ever more quickly than with NA.