Hello Forum,

I elected to wait at least a year after treatment to post my results from RT. Some background: I am 61. My first nodule appeared in my right hand approximately 2 1/2 years ago triggered by a shoulder injury. Within 6 months, to a year, the disease spread to all 4 extremities. I elected to do RT about one year into spotting my first nodule. Initially I was miserable. Nodules hurt along with very uncomfortable nerve type pain in my hands. As the disease progressed to my feet walking became quite painful. Even at rest they itched and ached. My greatest hope with RT was to stop the pain, reduce symptoms, and slow the disease. Only the more aggressive DD hand was treated based upon the protocol of the doctor I used. This was my right hand where at the time I had already developed 7 nodules and 5 cords.

Result Positives: The nerve type pain in my hands stopped almost immediately after my first round of RT. After the second round of RT the pain in my feet lessened substantially. The disease has slowed with only slight progression.

The negatives: The cords and nodules have hardened causing some tightness, discomfort at times, and less extension.

Overall: I clearly have flare ups at times when my hands and feet hurt more, typically cold weather, or when I'm stressed, or use my hands and feet too much. Certain activities cause my hands to hurt and aggravate the nodules and cords. I am learning to live and accept the limitations.

Some conclusions: Everyone responds differently to this disease and it has been my observation that those who have thin, less fatty hands do not do as well strength wise or pain wise. People like me. Also, it is important to find not only an RT experienced doctor, but a qualified radiologist and treatment facility to implement the RT.

I have no regrets about doing RT!

I will be forever grateful for this Forum that led to my decision to do RT.

Nan

Edited 05/19/15 02:19

Hi Nan,

Good to hear you are managing well and pleased with the outcome so far of your visits to Hamburg. Apart from skin splits in thumb and forefinger, treated with hand cream(s), I too am pleased with the outcome.

SB

spanishbuddha:

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Hi Nan,

Good to hear you are managing well and pleased with the outcome so far of your visits to Hamburg. Apart from skin splits in thumb and forefinger, treated with hand cream(s), I too am pleased with the outcome.

SB

Hello Forum,

This is an update to my personal story with DD and LD. You can read past posts of my journey by searching “nanshands” or reading the post at the top of this thread for an overview. I know how much I appreciate those that update their personal journey with this disease from time to time. So I hope this post will be of some value to others.

Review: At the beginning of 2014 I had RT to my right hand. The RT substantially slowed the progression of my DD in both hands and LD in both feet. It also relieved most of my painful symptoms. Though it seemed to cause cords to tighten and affect full extension in the treated hand.

In January 2016, after almost three years of very slow progression my feet began to show painful symptoms again with slight growth in nodules, this was followed by a rapid forming of nodules and cords in my left hand about six months later. Both of my hands began to experience the truly annoying, nerve, tingling pain I had experienced years earlier when the disease began.
Not wanting to travel to Germany again, where first treated, I revisited a doctor a few hours away I had seen prior to deciding to go to Germany. Back in late 2013 he, too, was prepared to treat my right hand. I assumed now that my left hand was progressing in a similar manner, with obvious nodules and cords, that he would naturally treat my left hand. That, however, was not the case. He insisted on a MRI of both hands to do comparisons of some sort otherwise he would not proceed with RT. (If an oncologist insists on MRI’s for your hands to do RT, please find someone else to treat you! Just my personal opinion.)

He would not even review the documentation of first RT treatment Prof S, in Germany, provides his patients. Honestly, it was REALLY odd. My husband and I left his office perplexed and upset. Along with, now what do I do?

Long story, short, I was very fortunate to discover that a couple of years ago an oncologist right where I live, Dallas, Texas began doing RT treatments for DD and LD. He willingly spoke to me on the phone prior to even scheduling an appointment. I ask pretty tough questions. I want to know that I’m dealing with someone truly qualified. I was impressed with his knowledge, well researched, considering how relatively new he was to helping people manage this disease.

After meeting with him in person I was even more impressed with him, his staff and facility. He immediately reviewed in detail my previous treatment and records from Germany. He follows Prof S’ protocol, but also open to 21Gy protocol of 3Gy x 7 days. Dr. Donald Schwarz is now listed on the homepage under Treatment/Radiotherapy. As he should be! It was wonderful working with him from beginning to end.

I completed my second round of RT to my left hand in January of this year. The treatment and results have been very similar. Hand felt great after first round, progression stopped along with symptoms. After second round cords hardened, extension decreased, and pain returned for several months before settling back down. That does not mean I am pain free. I am seldom pain free, but the constant nerve type pain has ended.

Overall, I am perhaps experiencing less success than I did the first RT treatment three years ago. Though, I have not been as careful with my left hand after treatment as I was with my right hand. In the center of my hand, where the RT concentration was the greatest, nodules have actually grown and hardened. The cords in both middle fingers and thumbs are my biggest problem.

Conclusion: In hindsight now, after two RT treatments that produced the same results, I would have stopped after round one, and waited to do more, if or when needed. For me the difference between round one and round two in both hands with cords and stiffness has been significant. Though the disease appeared suddenly for me, moving to both hands and feet within two years, I treated with RT in very early, progressive stages. I will always question if less Gy may have been adequate with less side effects.

Time will tell regarding cord progression and discomfort I have in my hands. But, I am pretty convinced, at this point in time, that any contraction that may lead to additional treatment will probably not ever be the case. The middle fingers may be the exception.

Best to all, Nan

wach:

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Hi Nan,

thank you very much for your update! It's the long term tracking that makes personal stories so interesting and provides insights.

Getting 15 Gy and then decide whether it needs another 15 Gy seems a good approach, which also Seegenschmiedt has suggested. Many clincis would just go on and do the full 30 Gy protocol just "to be on the safe side" but, as you are writing, it might create more damage and you are losing the option of another treatment later when it might be much more useful. The downside is that progression after 15 Gy is more likely but I know of at least one German clinic which generally applies only 15 Gy.

Wolfgang

Edited 06/08/17 00:52