Hi all, have been absent from forum for awhile but have some experiences to report. Thanks to Dr. Denkler my disease was stable for quite awhile. Then it kicked up again with quite a few new nodules. Dr. D thought using xiaflex in them and in the site of my original contracture would help stop the progression of the disease. So I got the injections. Unfortunately I reacted rather negatively to the drug. Bruising and discomfort for months. And then I injured one hand and I think that started up some more nodules and a new cord.

So I asked Dr. Denkler if radiation would be a good idea and he said yes since I was essentially at stage zero. Only a slightly bent pinkie but new nodules in palms. Hand therapy helped with the injury but there are new bumps.

I checked this site for places to get radiation and could get some about 300 miles away but it would mean staying somewhere for a week and was inconvenient. Dr. Denkler said to seek out a local radiology group and see if I could find someone willing to treat me since the protocol is well established and a properly equipped radiation oncology group could do it. He gave me a referral to the only such group in our small town.

Lucky for me the radiation oncologist was very eager to treat this as he had studied a great deal about non malignant conditions and radiology as a resident. He had even met Dr. Siggenschmidt (I know that is spelled wrong) at a conference. AT our appointment I learned he had talked to Dr. Denkler and reviewed my records and studied up on the protocol as well as the disease. He has excellent credentials and was very interested in the prospect of treating this. So it sounded good to me and I have just finished my first week of radation. Will have another week in 8 weeks. I feel fortunate to have found this radiation oncologist - Dr. Join Luh of Eureka California and would encourage anyone to try to find a person for treatment if great travel is involved. The technicians were also excited to do this treatment and several others came in to learn. Overall an excellent experience.

So far no side effects from the treatment. They said some redness might appear or dryness in a day or so but thats about it. I am really hopeful that this will arrest the progress of this disease for awhile and am grateful to Dr. Denkler for helping me get this done as I think the fact that he is such a leader in treating this disease helped me get taken seriously and get in for treatment.

So I will post in the future how this goes. No sign of any shrinkage yet but I guess it takes awhile. Who else has had radiation and noticed nodule shrinkage and how long did it take?

DianeS

Thanks Luba for responding to my post. I have had trouble navigating this site as I am a computer dolt and really would like to communicate with some people who have had radiation. So far I have had no itching or redness. I had five days of treatment. Then we wait 8 weeks and do five more days. Supposed to make for less irritation. This is the same protocol used by some other places I checked so sounded ok.

So far not much happening with the nodules and such. They certainly are not any bigger and sometimes I think they are a bit smaller but that may be wishful thinking. Glad to know it takes some time for effects to show up and that after two years you feel a remission. Do you have any contractures at all? I have one slight bend that is maybe 12 degrees that used to be much worse but Denkler fixed it.

I considered coming down to Scripts as my brother lives near there and i could visit and stay with him. But the local deal is less disruptive.

So I will keep posting about this. The main thing I wanted to get across is that if you can't go to LaJolla or one of the centers known for this, its possible to get it done anywhere there is an able and interested radiation oncologist with a fairly common piece of radiation equipment used routinely in treating cancer patients. I feel lucky to have found a doctor with excellent credentials and a genuine interest in the disease. I am in way norther california if anyone is interested in this doctor. DianeS

DianeS,

Hope you get long lasting results from your radiation treatments and be patient, from my experience and other posts...
it takes a while for the results to show and the improvement continues over a period of months. Please keep us posted.

I am glad to hear that your Anthem insurance paid for this. I have Medicare (primary) and Anthem Blue Cross (secondary). My radiation treatment in Nov. 2009 was covered...at least I never got billed by Scripps...., but Flora (Flojo on this Forum). who also was treated at Scripps in LaJolla, had a problem with Medicare covering the treatment, the second time she had it done, and the problem is that Anthem only pays AFTER Medicare pays first....so for me its a big dilemma if I would need to have the radiation done again.

As far as contractures, I do have a badly contracted small finger in my right hand, about 60% contracture on the PIP joint and a boutonniere contracture on the DIP joint. (boutonniere is where the tip of your finger turns upwards, so the finger looks like a reverse Z). I had a Needle Aponeurotomy (NA) on this finger in 2006 by Dr. Denkler. It was straight at first, but after six months the contracture returned. In 2010 I had a second NA on the same finger by Dr. Eaton...again, at first the finger was straight, then the contracture returned to the same position it was before NA.

I had big hopes and eagerly awaited Xiaflex, but from what I have read here, there are too many side effects and no statistics yet on long term results... so its "wait and see" for this contracted finger... for now its not getting worst.

Thanks for your response Lori. Its really great to hear specific experiences as I don't know anyone who has done this and don't know what to expect. How far apart were your two sets of treatments? Mine are going to be 8 weeks apart as the doc says this gives the best results and less likely to have skin problems. after the first five sessions, no ill effects that i can see - maybe a hint of dryness but really nothing. I am a ceramic artist and I have been able to work in clay with no problem. Its good to know to expect to wait 8 weeks or so before seeing any improvement in the nodules and cords. So I won't worry if I don't see anything right away. At least it is not getting worse and before rt it was on the move again and a new cord had formed within a few weeks, or so it seemed. Glad the rt worked for you. I am wondering if after several years this can be repeated if necessary. hopefully won't need that.

I am just grateful that I was able to get this in my small town. I could have gone to San Francisco or Palo Alto or even Scripts but it sure was less disruptive to do things here. I really was impressed with Dr. Join Luh if anyone else is in northern rural california. Diane

Diane
I do have arthritis in both thumbs and there are cords in the web between the thumb and the index finger in both hands. There is a slight pulling of the thumbs towards the palms in both hands, but I doesn't concern me much. Thanks for your recommendation regarding keeping an open mind for Xiaflex. I'll discuss it with Dr. Denkler when I see him. I'm planning to contact him in the next few weeks to set up an appointment, for him to evaluate my bent pinkie finger that he did needle on in 2006, and also to look at my small finger in the left hand that is starting to look "weird"... not bent, but a little twisted with a small cord developing between the MCP and PIP joint.