Hi Everybody,
I've been busy and not on the Forum much in the last few weeks. Last week, I was in Carlsbad,CA at a Deepak Chopra workshop so decided to have Dr. T at Scripps check my pinky and thumb again since it is very near. I had gone for a followup in June and he advised me not to look for trouble. Since that appointment in June, a large, but soft nodule has formed above the metacarpal joint of my right pinky. (The joint nearest the palm - I think that's what it is called) There has also developed a little contracture of my pinky and some tightness and contracture across the palm to my thumb. Dr. T palpated my hand and found some nodules in my thumb on the web side as well. They did a CT scan this time also to again determine the depth to send the electron rays.

Since this Dups has developed in the last 3 months, it is evident that it is in active stage, therefore Dr. T thinks that RT is appropriate again. (He queries a lot to determine if the Dups is active. If it is not clearly active, he won't do RT.) He and I are both very pleased that Dups in my palm still has not progressed since RT done in July 2009.
Note: The nodules that I have now are outside of palm and margin area radiated in July '09. My whole palm and metacarpal joints of all digits were radiated at that time.

I will start this RT next Monday and it will be in just two small areas - all of the pinky from the metacarpal joint again up through the PIP and DIP joints. The area along the inside of the thumb metacarpal joint will be radiated. Since I had a very low dose of electron radiation last year, he will do the pinky metacarpal joint again because the nodule and beginning contracture involves the meta joint. Except for the pinky meta joint, the rest of the RT will be outside of the area radiated last year. Since my palm is cupping and won't lie flat, it looks like it will need to be zapped in consecutive zappings, one right after the other. It will again be M-F for two consecutive weeks.

I don't hesitate having this done. RT was so effective for stopping my active Dups in my whole palm. Even though
Dr. T did margins that included the meta joints where no nodules were evident, that little Dupy rascal slipped just outside the radiation and started acting up again. Dupuytren's is just plain sneaky!

Since last July, we bought a small 2 bedroom condo in Oceanside, CA that is an easy commute to Scripps so I will be staying there this time. The condo is an easy walk to the beach - less than 1/2 mile so I'll enjoy the Pacific, too.

(I will be happy to rent the condo at a very good rate ($50/night) for my Dupuy friends if it might work for you if you choose to get RT from Dr. T. It is a small complex (only 15 units), gated, nice area, 3 blocks from the train/bus terminal plus one more block to the beach. Most units are occupied by full time residents. If you are interested, email me and I will send pictures and info.)

callie:

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I still struggle with the timing of RT, or any other treatment. 15 years ago I developed small nodules in thumb and forefinger. Using what I have read here about RT, I should have had RT as these developed (projecting the situation to today's technology).
Yet, these nodules and dimpling have not progressed at all in the last 15 years. If I were to have had RT, I would have thought that it was RT that arrested the advancement of Dupuytren's. But, I did not have RT.[/center]

People tend to equate low level radiation for Dupuytrens on the hands or feet with high level radiation of the brain or organs that occurs with cancer treatments. The two are worlds apart when it comes to the risks involved. Any oncologist will confirm this by comparing the radiation levels proscribed for treating Dupuytrens.

My own progression was halted but not reversed by the XRT and I wish I had learned of this disease and the different treatments earlier. Now my only option is continued NA or Xiaflex (with an out of pocket cost of $4000 per treatment).

US doctors are reluctant for legal liability reasons to proscribe any form of treatment that is not an accepted practice in the USA. So they will over proscribe accepted procedures like an MRI but shy away from NA or XRT for Dupuytren's. In the USA in 2007 the only place willing to treat me was a teaching hospital where the liability of the doctors was not a concern. I was turned away by 3 oncologists and they all admitted that the legal liability was the reason for rejecting me as a patient.

There is also a lack of understanding by doctors about the debilitating aspects of the disease. When a surgeon like Dr. Denkler finds themselves with a disease that is affecting their ability to perform in their profession it has a very real impact on how they view it. Most lack that insight and their advice is lacking as a result.

Report on 2nd RT -
It went well. No drying. No peeling. Hard nodule in first joint (? - the one nearest my palm) has softened and seems to be softening more. Nodule in web of thumb softened. Those are indications that RT worked again, so to me that means it may well stop or at least slow progression. That's my main goal. If it goes like last time, the improvement will continue for 6-8 weeks or more. My hand is probably always going to be knotty in the palm, but hopefully it will stay like it is. My whole palm was radiated 14 months ago, then DD decided to mess around outside the radiated area. I really wanted to keep my pinky from getting bent, because from what others have said, the pinky seems to be the digit that is hardest to correct or even may not be correctable once bent.

I watched the digital readings on the screen as the 80 seconds ticked by during RT. It was interesting. 80 seconds of RT covered all 3 joints of my pinky through the designed hole in the metal plate. They were careful that it was positioned so that it should not get out to the nail, even though the top side of my finger was down and the RT only goes as deep as the CT scan indicated the Dups to be. I thought that was interesting. There was another 80 second session that radiated part of the web and into part of my thumb. They also took care every time to ensure that it was not getting to the nail. They changed out the plate with the hole in it for the pinky for another plate with the hole in it for my thumb.

Electron radiation is specific to the very spot they target. I asked if they could use that machine to radiate any part of the body. They said the machine can rotate 360 degrees to reach wherever needed. I stood and held my hand on the table and the RT was delivered from the top, but the table is big/long enough for a person to lie down on. I asked the tech about the bolus and he said that is is designed to be "skin like". He showed me several thicknesses of bolus. The one used for me seemed to be the thinnest, about 1/4 inch thick. It looks and feels flabby and reminds me somewhat of a yellowish bubble wrap. It's hard to describe. It helps to make the radiation the specific depth and dosage prescribed. It is a very sophisticated process.

I mentioned to the tech about it taking only 80 seconds and he said they don't look at the time. He said the dose is what is important and the equipment calculates the dose and the RT beam can be affected by physics factors such as humidity, barometric pressure, etc. The dose was 2G this time as well as last time. I don't know why I thought I got 1.8G last time. I "misremembered".

I think Dr. T knows his stuff. He was very pleased that the first RT was effective for my palm and that it seems to be holding.

I've been busy these days anyway and being gone from home for most of 10 days added to the busy time. At least it was very relaxing while I was there.

Any questions?

Flora,

Thanks for pointing me to your post and for the detailed description at the Scripps clinic. I hope this second treatment completely stops the DD for you. Your experience with the DD affecting an area just outside of your previously treated area is the final concern I have since I have to pay for this expensive treatment. Unfortunately, it seems there's no way to know in advance and I assume treating the whole hand in advance either simply wouldn't work, or just wouldn't be an option considered by the radiologist. Still, the expense is nearly prohibitive.

Good luck!