I have had NA and XRT 4 years ago and although my right hand is still in great shape my left hand, where the disease had progressed the furthest prior to treatment, is again contacted. In researching Xiaflex I wanted to find a doctor that also practices hand surgery as I would expect a reduced chance of complications from an inaccurate needle placement for the injection.

This is complicated as I also needed a doctor who accepted my Empire Blue Cross PPO insurance and that made for a very short list of 1 doctor in a 120 mile radius of San Francisco. Otherwise I would have had to get the doctor to inspect the hand, provide me with paperwork to submit to the insurance bureaucrats and then arranged to pay the $3500 for the Xiaflex and have it shipped to the doctor and then make an appointment for the injection.

I found 4 doctors in total that were both hand surgeons and had experience providing the Xiaflex treatments. One is Dr. Kyle Bickel in San Francisco who I was told has treated more than 20 patients. The one I selected that accepted my insurance has treated only 6 patients but worked under the doctor that was in charge of the Stanford segment of the Xiaflex trials.

What was interesting was the different responses to the entire process which varied from one doctor's office to the next. One wanted me to come in one time for the consultation, a second time for the injections, a third time for the straightening, and a fourth time for the splint. The doctor I selected, Dr. Aileen Shieu, takes care of the splinting immediately after the injection and prior to the straightening.

Unfortunately the trials were limited in numbers of test subjects due to shortages of Xiaflex and as a result only one protocol is approved at this time. So each additional injection must be done at 4 week intervals. There is also no protocol for dealing with the swelling of the hand that is the most common side effect of the collagenase. The recommendation is to elevate the hand but this is a very rudimentary and only partial solution.

I would be interested in whether anyone has used ice after the injection to moderate swelling or used something like DMSO or urea to help the body remove waste products - which is also what happens with icing (swelling impedes circulation which makes it more difficult for the body to function in this regard).

The doctor who will be performing the treatment on my hand and who worked with the people on the Stanford managed trials admitted that the number of patients is too small to draw accurate statistical references or to really know about recurrence rates and severity. In her opinion the the likelihood of needed a future treatment was about the same for a Xiaflex treatment, NA, and a fasciectomy.

From my own research over the past 4 years I would put the risk of serious side effects and complications as highest by far with a fasciectomy , and next most likely as a very distant second is the Xiaflex treatment, with NA providing the lowest risk, and all procedures depend to a large part on the experience and skill of the doctor. My reasoning for choosing Xiaflex over NA for this second treatment is that I expect the Xiaflex to provide a loosening of the entire chord instead of only sections as with NA. A couple years from now I will know whether my reasoning is borne out in reality.

Hi Moondance, I'm glad that you are still on the forum. I know that you had radiation by Dr. Chang a couple of years ago and was wondering how you are doing.

Diana

Moondanc,

I agree it is good to see you back. I have to say RT worked for me. No more progression. It has been 15 months I think from my last treatment and I have to say that I saw vast improvement from the 8th-12th month after treatment. I regained a lot of strength in my hand, able to use screwdriver, hold a bucket of water, chop vegetables, things like that. I did hurt it this past weekend. I was breaking up ice on the driveway and the pounding made it ache and caused the cord to become visable again. I also no longer have dry skin in the treated area.

I am greatly pleased with the outcome and very thankful for this forum. Without it, since mine was so aggressive I can't imagine what my hand would look like now.


Regards,


Lori

Edited 01/17/11 17:53

Hi
I am one of the patients of Dr. T. at Scripps... Had RT 11/09 on left foot (two hard, marble size nodules) and left hand (multiple nodules, dimples on the palm...but no cord or contracture).

14 months later....

Foot - the nodules are definitely smaller and softer... progression has stopped.
Hand - the nodules are smaller, softer in the area that was radiated...but...new nodules have appeared in the web between index finger and thumb... these are outside the radiated area.

Still debating what to do next.

Diana:

---

My hand developed another lump and chord after the radiation, the new area is nearer to my pinkie. I'm lucky that I don't have any contraction yet but there isn't any way to know if it was the radiation or that I wouldn't have had it anyway at this time. (I suspect the latter).

I really can't tell any difference before or after radiation except that my hand is slightly drier than the other one. It still aches sometimes, perhaps a bit less after radiation(?)

Knowing what I know now, I would still elect to have the radiation as I hear that the dose isn't that great and the odds of it stopping progression are high.

Diana