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RT Update
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05/18/2015 23:17
nanshands 
05/18/2015 23:17
nanshands 
RT Update

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

05/19/2015 03:09
Cherise 
05/19/2015 03:09
Cherise 

Re: RT Update

Hi Nan,

Great news. I was happy to read your post . Well done and expressed your experiences very well. This is such a fickle disease. Can you use your hand to do most things now? Building strength thru therapy helped me and a squeeze ball.

I have had a terrible time with DD. both hands feet and shoulders.

I had surgery on one pinky and as a result it caused a flare in the other fingers which were just fine before surgery.

The pinky which had surgery contracted to 180'. Then I tried Xiaflex a bio drug it's an enzyme that dissolves the nodes and thickening cords caused by extra build up of collagen. THe Xiaflex injection opened my pinky. Now need to wear a spring splint day time and hard splint nightly to prevent the finger from contracting again. And strengthen hand daily exercises. I have had nodes in my hand for 20 years . I Also have palm psoriasis there seems to be a connection with DD in studies I have read. Do u have psoriasis? Just curious.

I am hope I have as good a outcome with RT as you did. That's great to hear !

Kind Regards,
Cherise

05/19/2015 14:00
spanishbuddha 

Administrator

05/19/2015 14:00
spanishbuddha 

Administrator

Re: RT Update

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

05/21/2015 23:12
nanshands 
05/21/2015 23:12
nanshands 
Re: RT Update

Cherise:
Hi Nan,

Great news. I was happy to read your post . Well done and expressed your experiences very well. This is such a fickle disease. Can you use your hand to do most things now? Building strength thru therapy helped me and a squeeze ball.

I have had a terrible time with DD. both hands feet and shoulders.

I had surgery on one pinky and as a result it caused a flare in the other fingers which were just fine before surgery.

The pinky which had surgery contracted to 180'. Then I tried Xiaflex a bio drug it's an enzyme that dissolves the nodes and thickening cords caused by extra build up of collagen. THe Xiaflex injection opened my pinky. Now need to wear a spring splint day time and hard splint nightly to prevent the finger from contracting again. And strengthen hand daily exercises. I have had nodes in my hand for 20 years . I Also have palm psoriasis there seems to be a connection with DD in studies I have read. Do u have psoriasis? Just curious.

I am hope I have as good a outcome with RT as you did. That's great to hear !

Kind Regards,
Cherise

Hello Cherise,

Yes, I can do most things with my hands, but definitely limited. More than expected. I've given up golf, gardening, lifting anything heavy, and pulling on things. I wear padded gloves to drive. The disease for me is easily aggravated. And, though progression has slowed, it is still progressing. At least three new nodules since finishing RT. And one in the right hand that was treated.

I have more day to day pain if I try to force extension in my right hand. So I just let it be relaxed with slight curvature in all fingers. I could do more RT since I have only treated one hand, but not certain if I want to experience the possible negative results in my left hand that I have had in my right hand. Left hand still feels much better than the right hand, with fewer nodules and cords. So waiting and thinking. If the disease takes off again in high speed mode I would likely do RT again.

Though I do not regret doing RT, I also have not had some of the better results that others have had. That's way it goes with these types of things that are so dependent upon many factors.

No, I do not not have psoriasis. I was told by my doctor that my DD and LD were triggered as a result of shoulder issues.

It sounds as if you are considering RT, but from what I have read about your history and progression, I would seriously question if it would benefit you. RT is most effective in early, progressive stage. Have you tried NA for cords that are causing contraction?

I am sorry to read of all that you go through with this disease. Not easy, easier said than done, but try to remain hopeful!

Best wishes, Nan

05/21/2015 23:19
nanshands 
05/21/2015 23:19
nanshands 
Re: RT Update

spanishbuddha:
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


Okay, SB, maybe you posted about this and I missed it, but please explain the skin splits in thumb and forefinger? Just the extreme dryness? How much tightness in cords have you experienced in comparison to what you had before RT?
That has been a real problem for me.

Nan

05/22/2015 05:32
Cherise 
05/22/2015 05:32
Cherise 

Re: RT Update

nanshands:
Cherise:
Hi Nan,

Great news. I was happy to read your post . Well done and expressed your experiences very well. This is such a fickle disease. Can you use your hand to do most things now? Building strength thru therapy helped me and a squeeze ball.

I have had a terrible time with DD. both hands feet and shoulders.

I had surgery on one pinky and as a result it caused a flare in the other fingers which were just fine before surgery.

The pinky which had surgery contracted to 180'. Then I tried Xiaflex a bio drug it's an enzyme that dissolves the nodes and thickening cords caused by extra build up of collagen. THe Xiaflex injection opened my pinky. Now need to wear a spring splint day time and hard splint nightly to prevent the finger from contracting again. And strengthen hand daily exercises. I have had nodes in my hand for 20 years . I Also have palm psoriasis there seems to be a connection with DD in studies I have read. Do u have psoriasis? Just curious.

I am hope I have as good a outcome with RT as you did. That's great to hear !

Kind Regards,
Cherise

Hello Cherise,

Yes, I can do most things with my hands, but definitely limited. More than expected. I've given up golf, gardening, lifting anything heavy, and pulling on things. I wear padded gloves to drive. The disease for me is easily aggravated. And, though progression has slowed, it is still progressing. At least three new nodules since finishing RT. And one in the right hand that was treated.

I have more day to day pain if I try to force extension in my right hand. So I just let it be relaxed with slight curvature in all fingers. I could do more RT since I have only treated one hand, but not certain if I want to experience the possible negative results in my left hand that I have had in my right hand. Left hand still feels much better than the right hand, with fewer nodules and cords. So waiting and thinking. If the disease takes off again in high speed mode I would likely do RT again.

Though I do not regret doing RT, I also have not had some of the better results that others have had. That's way it goes with these types of things that are so dependent upon many factors.

No, I do not not have psoriasis. I was told by my doctor that my DD and LD were triggered as a result of shoulder issues.

It sounds as if you are considering RT, but from what I have read about your history and progression, I would seriously question if it would benefit you. RT is most effective in early, progressive stage. Have you tried NA for cords that are causing contraction?

I am sorry to read of all that you go through with this disease. Not easy, easier said than done, but try to remain hopeful!

Best wishes, Nan

Hi Nan,

We seem to have similar limitations with DD in our hands.I have tried NA after surgery no luck.RT is only used on nodes as far as I understand. I have it in my feet and shoulders. Nodes are small yet, feet are beginning to form larger nodes, my shoulders are limited in movement.

What triggered my right pinky to contract to my palm was surgery. I was told the small curve in the pinky at the time would get worse if not controlled early.After surgery & 2 months later all the fingers had begun to contract which were not effected before surgery and the pinky was closed to fist.So on to a bad flare as the surgeon said sometimes that happens. & That there was nothing more he could do.

On to Xiaflex 2 years later.I wear a spring splint now during the day love it. So easy to wear & exercise for strength and wear a hard splint at night. Also had cortisone in the nodes in my palms helped with the tenderness and pain,which by the way got bigger and very tender after Xiaflex injection into pinky.

It is my understanding that this will come back & to prevent the finger to curl back to the palm again a nightly splint was recommended for a year or more.My wrists are messed up from compensating with all the hand issues. I have PsA in my hands, psoriasis and arthritis.

I do everything just more limitations learning adjustments as I go.I had serious side effects from Xiaflex & will not do it again.Still dealing with some uncomfortable acute side effects from Xiaflex.Now I am taking the wait and see attitude, hoping DD will go into remission.Protecting my hands,feet & shoulders.

My horses are my legs, one is 33 with severe arthritis.He is my hero, takes me on a cushy walks to help relieve stress. He's my shrink too! We go for short walks and it builds both our spirits. It's good to be out in nature. I know my time is limited with him we have been thru a lot of trails all these years.He takes care of me and I him.
Of course the love of my life, my hubby is always my best support helps with all he can.I care for him too, he is my rock!

Hope u have great support too?
Kind Regards,
Cherise

06/02/2017 21:28
nanshands 
06/02/2017 21:28
nanshands 
Re: RT Update

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

06/03/2017 07:04
wach 

Administrator

06/03/2017 07:04
wach 

Administrator

Re: RT Update

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

06/07/2017 21:47
nanshands 
06/07/2017 21:47
nanshands 
Re: RT Update

wach:
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

Hello Wolfgang,

Too bad the option of only doing 15Gy was never even slightly suggested to me by either of the two doctors I have done RT with now. Had it been I would have absolutely waited. I highly questioned both doctors, one of which was Prof S, the need to do more after first round of 15Gy. And, both doctors persuaded me towards doing the additional 15Gy based upon long-term results. I don't think enough consideration is being taken into account on individual differences, but also realize that is not easy to do. There is still a huge need for more studies.

I am glad that you posted your comments above. Though it is too late for me, it may not be for someone else. I should have trusted my gut, and gone with what I felt was best for me.

Dr. Schwarz commented that any kind of radiation can cause formation of scar tissue. That may be what I am primarily facing right now. It was suggested by another RT patient friend of mine, that Prof S recommended to her to try silicone scar tissue pads on hardened nodules and cords after RT. My friend had positive results with softening one of her nodules that had developed scar tissue. I am trying that. We'll see.

Just to be clear to others. I do not question the value of RT in early stages of DD progression. Both first rounds of RT had amazing results! Only regret not waiting to do more, if disease began to progress again at a rapid pace.

Thanks again for your response. Take care, Nan

Edited 06/08/17 00:52

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“nanshands”   substantially   shoulders   treatment   treated   documentation   Seegenschmiedt   surgery   Nodules   uncomfortable   fingers   extension   progression   Xiaflex   experiences   psoriasis   disease   Cherise   concentration   results