I did ask Prof. S the question if I can walk after RT or if I should take it easy. His response was to walk, so walking I did, both times. Hamburg is a great city and my husband and I walked from morning till night. I am not sure about running, but walking was not restricted.

Btw, my feet also hurt after RT, more so than before RT. The pain went away 4 to 5 month after my second round. It just was gone from one day to the other. I still know I have feet and I also know I will never have my "old feet" back, but for now I am doing good. Prof. S also told me to walk barefoot, which I love. I walk barefoot most of the time. My feet don't like shoes. I can not wear shoes with arch support, that would make my feet hurt. It has to be the right pair of shoes for me to walk pain free.


Christl

Tricia, I think you've got answers to your questions, but I will add that I was on my feet ALOT during radiation and I don't think it helped. Prof S words were 'no pounding' them then or for awhile after and I think in my thin sole shoes, that feel better, my feet were taking a pounding on hard pavement. I would say the same for running I think. Mine have been worse since, and I was not expecting this.

Tamara

Hi Tamara,

Glad you went for it in the end. When did you travel? We may have been there at the same time! Our stories sound similar i am only back for a couple weeks but my nodules go a little firmer quicker and they relly do feel like they are coming out more (like out of the skin ie bigger!)

Prof S said they may get firmer as they may begin to turn to scar tissue (i think ?) he blinded me with some science a bit so im not sure thats right but he said it seemed normal. I really dont regret at all, i think i may regret the timing , as i mentioned in my first post i have 2/3 weeks of 8hours+ walking holiday coming up soon!!! Maybe i should have gone after that, but i wanted to catch it and thought after 2/3 weeks things may be dying down. My feet are a little inflamed so i just keep them reseted and up when i can. Ive also ordered a spikey massage ball! Although that just looks painful!


Taosh - Being a runner , this must be hard for you. I agree with Christl.... Prof S said "be normal, do what you do" at least in regards to walking etc and said just carry on as you would. So yes he encourages normal walking, but i assume as Tamara mentioned you can still "overdo" it. I think i also did this while walking in Germany as my nodules got sore quick!

We've made our choices now and like someone said, we have done all we can , tried! :)

PS quite right about the choices, such a hard choice!

Thanks

Hi Tamara,

Glad they are feeling good. I now have stitches in one foot as i had to have a mole removed. My feet are just beaten up constantly!!! So i cant feel my nodules much as im limping due to the location of mole. Oh dear!

I too will be there in the first week of July!!! Ive booked already...i must warn you though they are closed one day so ive had to now go for 4 days treatment at an increased Gray. I had already booked flights etc so it was too late to change. Also Prof S is off in the second week of July i think he said? For holiday.

Who knows might just see you in the little waiting room!

Hi Tricia,

Hey, not to discourage you but if you just have noticed one small nodule in your foot you may likely not be ready for RT as yet. Consider that your trip to Germany may be more of an exam and discussion than treatment. I have been seen twice now for my LD by Prof. S. I have pain, typical symptoms that indicate treatment, and small, multiple, growing fibromas in both of my feet, but still have not received treatment. Learning to live with the pain and discomfort for about a year now. I have always been very active, I continue to keep up with my walking, but it's no picnic!

All to say, going to Germany for evaluation is helpful, gives Prof. S a good baseline, and helps you in understanding the disease better. But you may not be ready for RT. LD is evidently different with the timing for RT than DC, where earlier can be of greater importance.

Best to you,

Nan