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Update re RT treatment
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07/11/2011 09:30
Cyclist 
07/11/2011 09:30
Cyclist 

Update re RT treatment

Hi All
Week 6 after second cycle of RT and finally my feet don't dominate my day any more.

They are still feel wierd when walking on hard surfaces (sort of hypersensitive and bruised?) and not normal and the nodules do NOT appear to have shrunk, but no longer hard and painful.

The main breakthrough seems to have been that the tendon feels as though it has relaxed and the pain in the balls of my feet has subsided significantly. I don't get the intense pain that made me reach desperately to my massage ball for relief, although it still feels AMAZING to give my feet a good massage.

I'm walking for 90 minutes most days and back to cycling a few hours a few times a week again.

I'd be curious as to how others that had treatment this year are going? I'm wondering how you are going Debrr, Dianne and Drumhead (Steve)? Did you have treatment Beth?


All the best
Di

07/11/2011 14:12
Christl 
07/11/2011 14:12
Christl 

Re: Update re RT treatment

Hello Di,

I am so glad to read you are doing much better. Interesting to read for me was that your balls of your feet where hurting. Same here, it's my balls of my feet and my tendons that are sore. Those nodules must affect the whole foot area. Will see Dr. Seegenschmiedt in September to have my hands "nuked", will have him look at my feet as well. Would love to just zap them too, but from what I understand, they have to be active. My heels are hurting too, sometimes I get this sharp pain going through them, but it will go away after a few seconds. Strange. Have not touched those nodules on my feet, they scare me. I am affraid they grow bigger, some say, don't massage or it could get worst, some say massage. Seems conflicting messages are out there.

I am looking forward to your reports, I plan on having radiation when the time comes, so reading your posts gives me an idea what to expect. Thanks for the update.

I wish you coninued improvement. I am glad to hear you can walk without pain again.

Christl

07/11/2011 15:23
debrr 
07/11/2011 15:23
debrr 
Re: Update re RT treatment

Hi Di!

So good to hear you are coming along! I long for the the day where my feet don't dominate my day!

I have not gone back for second round of RT yet. I want to schedule another MRI to see if there is any improvement (even though my feet don't say so!) then send a letter to Dr. T and Dr. S and see what each of them have to say!

Do you mean the cord seems relaxed or the tendon? I am wondering if RT is like surgery in the sense that LD seems to come back with vengeance??? I have not gone back for round 2 and it has been almost 6 months. I seem to have pain in the balls and the heel of my feet now. Makes it very challenging to walk as there is basically no surface area that doesn't hurt then. Since RT my nodules seem very minimally smaller. Cords are much more visible but I think that is because of reduced swelling. I do notice sometimes they will still swell though. (Weather???) Do you have that?

What shoes are you using? I am planning a trip to Midwest (humid and bugs) so I will have to abandon my Teva flip flops in favor of more protection and hopefully cushioning for my feet. The relative I am going with will not tolerate delay and I know will put me in a wheelchair if I become a burden! I really need some GOOD shoes as I don't want that! I think "marshmallow" shoes would feel best.

What did Dr. S give you for instructions this time? I can't believe it has been week 6( RT2) and I didn't even know you went back! I'm sorry I am not always on top of this. Some days I just don't have much hope.

I look forward to all your posts,Di,as I feel you and I are quite similar in LD. So please continue your posts, they are very much appreciated!

To your continued improvement!

07/12/2011 11:13
Cyclist 
07/12/2011 11:13
Cyclist 

Re: Update re RT treatment

Hi Christl
Thanks for your message . I found that the pain in the balls of my feet was worse when I stretched the tendon which has become quite thickened (eg standing on toes to reach up high). The tendon doesn't seem to like it and I suspect it might be referred pain coming from the tendon, not just the nodule. You can experiment by not bending your feet at the ball of your foot to stretch it or stand on your toes for a few days. The trouble in the beginning when it all started was that as the tendon tightened, I got the constant urge to stretch it!
Di

Christl:
Hello Di,

I am so glad to read you are doing much better. Interesting to read for me was that your balls of your feet where hurting. Same here, it's my balls of my feet and my tendons that are sore. Those nodules must affect the whole foot area. Will see Dr. Seegenschmiedt in September to have my hands "nuked", will have him look at my feet as well. Would love to just zap them too, but from what I understand, they have to be active. My heels are hurting too, sometimes I get this sharp pain going through them, but it will go away after a few seconds. Strange. Have not touched those nodules on my feet, they scare me. I am affraid they grow bigger, some say, don't massage or it could get worst, some say massage. Seems conflicting messages are out there.

I am looking forward to your reports, I plan on having radiation when the time comes, so reading your posts gives me an idea what to expect. Thanks for the update.

I wish you coninued improvement. I am glad to hear you can walk without pain again.

Christl


Edited 07/12/11 14:41

07/12/2011 11:40
Cyclist 
07/12/2011 11:40
Cyclist 

Re: Update re RT treatment

Good to hear from you Debbie
You are quite right that Prof S. did find cords on my feet, so maybe this is actually what it is that gives me that tight feeling

Prof S told me that the first round of RT is when you feel the worst effects, because your body reacts most strongly to the treatment. He was right, it really was much easier this time around. He also said that it's a good sign that the treatment is working, when your body reacts strongly. Today the nodules have softened and might even be a bit smaller on my left foot, so maybe this is the turning point. I think it would be good if you could get some advice from Prof S. about your situation.

Even though I think I'm on the road to recovery, marshmallow shoes still sound good !

I'm wearing a Marmot hiking boot for day-wear and Nike Free shoes for walking - they have a really soft bendy sole that seems to cushion my feet even though they don't have a lot of padding inside. Because my feet have become sensitised, the Nike Free's are the closest I can get to that 'barefoot' feeling. When the nodules were really sore, I used to wear 2 pairs of thick hiking socks with thick padding underneath in my normal day-shoes, which also helped.

Keep in touch and all the very best to you !
Di





debrr:
Hi Di!

So good to hear you are coming along! I long for the the day where my feet don't dominate my day!

I have not gone back for second round of RT yet. I want to schedule another MRI to see if there is any improvement (even though my feet don't say so!) then send a letter to Dr. T and Dr. S and see what each of them have to say!

Do you mean the cord seems relaxed or the tendon? I am wondering if RT is like surgery in the sense that LD seems to come back with vengeance??? I have not gone back for round 2 and it has been almost 6 months. I seem to have pain in the balls and the heel of my feet now. Makes it very challenging to walk as there is basically no surface area that doesn't hurt then. Since RT my nodules seem very minimally smaller. Cords are much more visible but I think that is because of reduced swelling. I do notice sometimes they will still swell though. (Weather???) Do you have that?

What shoes are you using? I am planning a trip to Midwest (humid and bugs) so I will have to abandon my Teva flip flops in favor of more protection and hopefully cushioning for my feet. The relative I am going with will not tolerate delay and I know will put me in a wheelchair if I become a burden! I really need some GOOD shoes as I don't want that! I think "marshmallow" shoes would feel best.

What did Dr. S give you for instructions this time? I can't believe it has been week 6( RT2) and I didn't even know you went back! I'm sorry I am not always on top of this. Some days I just don't have much hope.

I look forward to all your posts,Di,as I feel you and I are quite similar in LD. So please continue your posts, they are very much appreciated!

To your continued improvement!


Edited 07/12/11 14:45

07/12/2011 19:47
Larry 
07/12/2011 19:47
Larry 
Re: Update re RT treatment

Hallo cyclist,

congratulation on your success ! It was exactly as you described for me, when I was treated for Ledderhose: the first Radiotherapy Round created a lot of symptoms which I initially considered as "worsening situation", however it was the active response of the body and the foot tissue which reacted to the first "real enemy" of the proliferating fibroblasts, the X-ray ! Round Two was much easier for me and despite aquite aggressive behaviour before I am now in a complete stable condition with my feet !

Prof. Seegenschmiedt gave me quite good advices for my foot care and the avoidance of specific strain situations; he also recommended the soft and gentle massage with the specific balls which I have shown in a previous thread. They come along in various sizes and colours and are relatively cheap (about 10 Euro):

Recently I had a conversation with Prof. Seegenschmiedt when I got treatment for one of my hands which progressed despite a stable situation of my feet and he showed me another form of massage tool which looked like a cylindrical roller or cucumber with knobs ... Its called "Togu Body Roll"



I find this also useful for my feet ! Further good success, Larry

07/13/2011 17:17
debrr 
07/13/2011 17:17
debrr 
Re: Update re RT treatment

Hello!
Does anyone in the US know where I can purchase these balls or body rolls? I also worry the massage may make them worse. It seems even touching them hurts. Any thoughts? Do you massage just the nodules? Because have pain in the balls of my feet and now recently in my heels as well. The cords are very thick now after first round of RT!
I am planning on contacting my doc today and requested another MRI of my feet prior to further treatment. Then making contact with Dr. T at Scripps and Dr. S in Germany. Has anyone else had foot MRI after the 1st round of RT and before 2nd round. Anyone want to share those results?
Does anyone else seem to notice increased pain with weather change (ie barometric pressure change, humidiity)?
Good wishes to all of you!

07/13/2011 19:05
spanishbuddha 

Administrator

07/13/2011 19:05
spanishbuddha 

Administrator

Re: Update re RT treatment

debrr:
Hello!
Does anyone in the US know where I can purchase these balls or body rolls? I also worry the massage may make them worse. It seems even touching them hurts. Any thoughts? Do you massage just the nodules? Because have pain in the balls of my feet and now recently in my heels as well. The cords are very thick now after first round of RT!
I am planning on contacting my doc today and requested another MRI of my feet prior to further treatment. Then making contact with Dr. T at Scripps and Dr. S in Germany. Has anyone else had foot MRI after the 1st round of RT and before 2nd round. Anyone want to share those results?
Does anyone else seem to notice increased pain with weather change (ie barometric pressure change, humidiity)?
Good wishes to all of you!

Try Amazon for the 'spiky massage balls'.

07/14/2011 15:11
debrr 
07/14/2011 15:11
debrr 
Re: Update re RT treatment

Thanks spanishbuddha! How are you doing?????

07/14/2011 17:34
spanishbuddha 

Administrator

07/14/2011 17:34
spanishbuddha 

Administrator

Re: Update re RT treatment

debrr:
Thanks spanishbuddha! How are you doing?????

Thanks for asking debrr.

It is one month since my second round of RT on one hand. This time I have the dry scaly skin as an after effect, but it's minor, and I'm using a high urea content cream. It's probably too early to say how successful the treatment has been. I think there's a clear reduction of some hardness in some areas and even some shrinking, but when I compare it to photo's taken before treatment it's not so clear if I'm imagining an improvement. We'll see.

I have a sight concern on the other hand. I can't tell if I have a joint injury or new nodule. Another we'll see. I just hope my fingers stay straight and flexible so I can continue with my piano playing.

Onto my feet. You did ask My plantar is much the same, it is manageable, but sometimes after exercise or overdoing the walking I can then hardly walk. I treat it with ice and just get on with it.

Here's to us sufferers of these conditions. A toast .....

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