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Increased Nodule size/ Pain AFTER radiotherapy?
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04/13/2014 14:05
prezzacc 
04/13/2014 14:05
prezzacc 
Increased Nodule size/ Pain AFTER radiotherapy?

Hi all.

Im just wondering if anyone knows or noticed increased size of Nodules and pain AFTER radiotherapy for Ledderhose?

Ive come back from Prof S in Germany after my first round of RT. (Brilliant service/experience by the way) Noticed nothing while there now im back i swear my nodules have got bigger n i get less time walking before pain kicks in.

Now its only been 9 days since last treatment so im Hoping this is normal and maybe they aren't bigger maybe just swollen/inflamed or maybe reacting to the RT? Just wonderd if anyone knew or had experience?

I could be worrying for nothing but i have a lot of walking to do in a few weeks so hoping this will settle as i know 1 or 2 said things were a little tender a week after treatment.

Should it get worse ill contact the Prof but don't want to trouble him (know how busy he is) for something silly.

Thanks all

04/13/2014 18:11
spanishbuddha 

Administrator

04/13/2014 18:11
spanishbuddha 

Administrator

Re: Increased Nodule size/ Pain AFTER radiotherapy?

I can't say about feet, but my hands were worse concerning soreness in the weeks after both rounds 1 and 2 of RT. I was unconvinced after 6 months of the treatment effectiveness, but two years on with one of the hands it is settled and stable, but no reduction in nodules, perhaps a softening. Of course that may have happened without RT anyway, that's the difficulty of assessing this treatment.

04/13/2014 19:22
Gary1987 
04/13/2014 19:22
Gary1987 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

My foot was more painful for about 5 weeks after the first week of radiotherapy. Then it started to get better and was better than it was before RT by the time I had the second week of treatment.

Gary

04/13/2014 19:54
GaryBall 
04/13/2014 19:54
GaryBall 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

prezzacc:
Hi all.

Im just wondering if anyone knows or noticed increased size of Nodules and pain AFTER radiotherapy for Ledderhose?

Ive come back from Prof S in Germany after my first round of RT. (Brilliant service/experience by the way) Noticed nothing while there now im back i swear my nodules have got bigger n i get less time walking before pain kicks in.

Now its only been 9 days since last treatment so im Hoping this is normal and maybe they aren't bigger maybe just swollen/inflamed or maybe reacting to the RT? Just wonderd if anyone knew or had experience?

I could be worrying for nothing but i have a lot of walking to do in a few weeks so hoping this will settle as i know 1 or 2 said things were a little tender a week after treatment.

Should it get worse ill contact the Prof but don't want to trouble him (know how busy he is) for something silly.

Thanks all
My feet were grumpy for several months after RT?....nothing debilitating....It took best part of a year for them to settle.
Patience is the key...

Good luck

04/13/2014 20:57
prezzacc 
04/13/2014 20:57
prezzacc 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Thanks everyone for the quick replies.

I think that's put my mind at rest a little, although i was hoping a week or two of tenderness was the norm. Maybe i should have tried to get the first round a tiny bit earlier. Such is life, if i need a stick/crutches to help me in a couple weeks. So be it!

Again thank you all for your experiences , interesting to hear how others have reacted.

04/14/2014 15:48
Tamarakruse 
04/14/2014 15:48
Tamarakruse 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

This is how great the forum is; I was thinking I should ask the same question. Dr S over a month ago, and yes, absolutely fabulous experience insofar as medical experiences can go, but much pain still and perhaps a bit more. Both feet. Somehow had not garnered from earlier reads that this was the norm, so fairly disappointed, nervous. But as I now read, I will revert to patience mode and hope for the best.

Another question that has been lingering, and I should bring up on the general forum, are people having soreness other than in the nodules on their feet? I am also confused that pain is as much in other areas of feet while on them too much. I know it's not PF, not the heel, more the outside and inside areas. Any one else experienced this?

Tamara

04/14/2014 17:04
prezzacc 
04/14/2014 17:04
prezzacc 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Tamara ...

Last i heard you were visiting Prof s....did you go for the treatment on both feet? How is everything?

My experience is the same...everywhere on my feet hurt. Heel middle back front. After more than a couples my feet just swell throb feel hot and generally ache ( this was before any treatment) i assumed it was all part of ledderhose but who knows. I managed to try and block it out like my fibromas!!

04/14/2014 17:14
Gloria 
04/14/2014 17:14
Gloria 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

I have only been dealing with this a couple of months and have had no treatment yet. I do have pain along the outside of my foot sometimes -not terrible pain, just kind of annoying really. I also have pain in the balls of my feet at times - this is a little more bothersome. Usually this is after I've been standing for awhile. No nodules there that I can feel.

04/14/2014 19:39
Tamarakruse 
04/14/2014 19:39
Tamarakruse 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Yes, I did travel to Prof S, got both feet treated and had a great experience. Except for my feet, walked a lot to see everything and paid the price with very aching feet. By the end of a day I couldn't hardly stand on them; all over pain not just the fibromas. But ever since the fibromas have gotten worse, I have felt the all over aching.

It just seems odd that it is not just my quite hard (tennis ball hard) nodules that hurt. Prof S couldn't really give me a good reason why. I have had a foot doctor check for PLantar fasciitis and this doesn't seem to be a problem. So, I guess it's just part of the process?

But yes I have been not saying much because waiting for my feet to feel a bit better, any better at all please, since my RT, but not yet. My one foot has now had two radiations, the first time at Scripps in San Diego. But, Dr S so much better, found fibromas in the foot that most likely were not treated in San Diego as the doctor hadn't found them. So now not
Sure what to do about that either. 3 radiations? Prof S seemed to think it would be okay but I'm unsure. San Diego hadn't even sent my records as were supposed to so I will get on that next so Prof S has a better idea what they did.

I guess at this time I am still guardedly hopeful, that at the least, my feet won't proceed to get worse, as my largest most bothersome lump has been treated twice now, and no change except perhaps worse. Again, not confident that first doctor treated at right time either though. All I can say for sure is that I trust Prof S and at least I am trying.

Is your story similar?

Tamara

04/15/2014 00:38
tasoh 
04/15/2014 00:38
tasoh 
Re: Increased Nodule size/ Pain AFTER radiotherapy?

Hi Tamara,

I am new to this forum, and wonder if you can answer a question for me. I am seriously contemplating a trip to see Prof S within the next few months. I was diagnosed with DD in the left hand 1.5 years ago (progressing slowly), and just discovered a small nodule along the arch of my left foot. Since I'm a runner, this really has got me on track for RT! Did Prof S give you any instructions about limiting your walking or activity after the RT? I wasn't sure in his answer to me about activity after RT whether a person is restricted as a rule because it could make the RT less successful in some way OR whether one is limited depending on the amount of pain or reaction to the treatment which can vary from one person to the next.

I am anxious thinking about having my running curtailed for extended periods of time after treatment, and this will factor into the timing of my trips to Germany. From a practical standpoint related to work and other commitments, I would prefer to wait until August for my first treatment, but I'm not sure if that's too long. Tough decisions! Thanks so much for sharing your experience through this forum.

Tricia

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