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Radiotherapy.
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11/29/2016 00:23
Angetori 
11/29/2016 00:23
Angetori 
Radiotherapy.

I recently finished radiation therapy with Dr. James Wong in Morristown New Jersey. Dr Wong follows Dr. S's protocol , and I was grateful to have this procedure so close to my home. I had radiation done on both my feet and my right hand.
(On my right foot I have a large fibroma in my arch and on my left foot I have a small fibroma in my arch. On my right hand I have nodules on my palm.)
I was wondering when any of you who've had RT started to see improvement after their radiation? I heard it could take up to a year and so far I haven't seen any regression in my nodules or my fibromas and the pain is the same.
Dr. Wong told me that sometimes for up to two months your feet/hand can feel worse than they did before the radiation and mine certainly do. I am a teacher in a kindergarten and I am on my feet a lot. I try to sit as often as I can and I ice my feet during lunch. Without my orthotics and trainers and ice I would be lost.
I'm hoping there's light at the end of the tunnel… any words of encouragement would be great. I was really banking on RT helping my LD.
Thanks.
Jeanne

Edited 11/29/16 02:26

11/29/2016 07:34
spanishbuddha 

Administrator

11/29/2016 07:34
spanishbuddha 

Administrator

Re: Radiotherapy.

Angetori:
I recently finished radiation therapy with Dr. James Wong in Morristown New Jersey. Dr Wong follows Dr. S's protocol , and I was grateful to have this procedure so close to my home. I had radiation done on both my feet and my right hand.
(On my right foot I have a large fibroma in my arch and on my left foot I have a small fibroma in my arch. On my right hand I have nodules on my palm.)
I was wondering when any of you who've had RT started to see improvement after their radiation? I heard it could take up to a year and so far I haven't seen any regression in my nodules or my fibromas and the pain is the same.
Dr. Wong told me that sometimes for up to two months your feet/hand can feel worse than they did before the radiation and mine certainly do. I am a teacher in a kindergarten and I am on my feet a lot. I try to sit as often as I can and I ice my feet during lunch. Without my orthotics and trainers and ice I would be lost.
I'm hoping there's light at the end of the tunnel… any words of encouragement would be great. I was really banking on RT helping my LD.
Thanks.
Jeanne
Hi Jeanne

Many people do report slight worsening of symptoms during or immediately after RT, maybe pain and redness. I myself thought my hands were far more sore, but it settled down. I did not feel any great improvement for quite a while and it was 18 months to 2 years before I was convinced it had actually worked. If you read Gary's story he went from being almost wheelchair bound to raising money for charity by running Marathons next year, following his RT treatment for LD. http://ledderhose.blogspot.co.uk

It might be frustrating but a bit more patience and hopefully your outcome will be as good.

Best wishes SB

11/29/2016 11:37
Angetori 
11/29/2016 11:37
Angetori 
Re: Radiotherapy.

Thank you for your encouraging words SB. Reading Gary's blog gave me hope for the future. Hoping someday I can go back to being my active self. I am an avid exerciser and I love to cook , this disease has changed that for me.
Thanks again and I will be keep my fingers crossed not contracted...wink, wink.

03/15/2017 19:55
allisun 
03/15/2017 19:55
allisun 
Re: Radiotherapy.

Hi Jeanne,

I am interested to hear an update how the RT went for your feet. I have a consultation with Dr. Wong next week for the Ledderhose in my left foot. Has the growth of your nodules stopped since treatment?

03/16/2017 00:26
Angetori 
03/16/2017 00:26
Angetori 
Re: Radiotherapy.

Hi Allisun,
Dr Wong and his staff were great. Unfortunately though I have had some progression on both feet. My fibromas have grown in size and my feet are always sore and very sensitive since radiation. I also cannot stand for more than ten minutes and I am always very aware of the sorness in my feet. It's all the time now.
I don't know if all this is due to radiation or just the progression my feet would have taken anyway.
In other words : had I not done the radiation would my feet be worse? Radiation might have slowed things down for me for all I know.
I had my radiation done when my fibromas were in an active growth stage and have been extra careful post radiation
Ie: no working out, staying off my feet a lot and only wearing Asiacs sneakers with my orthotics.
Mine is not the normal response to radiation, and Dr Wong has told me that changes can still happen for up to a year after treatment. So maybe there still is hope.
Or I am just in that small percentile where radiation therapy didn't work. I am glad I tried it though, I think I would be remiss if I didn't.
If improvement doesn't happen by September 2017 I will look into the enzyme injections, that would be my next line of treatment ....or I just might leave them alone and try to coexist with these lumps.
Good luck,
Jeanne

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frustrating   Unfortunately   orthotics   immediately   regression   Radiotherapy   Morristown   encouraging   kindergarten   progression   nodules   consultation   percentile   improvement   ledderhose   radiation   fibromas   encouragement   wheelchair   treatment