And 3 to go!! For now at least. The nurse told me some patients do have shooting pains after RT, and the feet are a really sensitive area... it is probably a combination of not staying off my feet as well as RT.

Saw Dr. T today and he said I should probably try to stay off my feet a little more. He also said he needs to see me again in 3-4 weeks. He said I will "probably" need a second round due to the size of the lumps. This seems likes uncharted territory here....Anyone else ever have 2 rounds of RT?? I am thinking I should wait at least 4 weeks to come back. Anyone have any thoughts on this?

I have stayed off my feet a lot today and so far no shooting pains tonight. I hope I have the strength to NOT stand in line for Sprinkles cupcakes tomorrow!!!

Thanks so much for providing this forum Wolfgang!! With so little information in the medical community this is a lifeline for those us suffering from this disease!
How long do you think I need to give the first round of RT time to show its effectiveness?

wach:

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I don't it would mean losing time if you waited one or two months before deciding whether you need further RT. You need to give the first round of RT time to show its effectiveness and your skin time to recover.

Wolfgang

Hi Wolfgang!

Now that I am finished I can say my first dose was 2000 cGy. 10x1x2Gy. Hope I wrote that right. Dr said I should come back in 3-4 weeks for a second dose of same due to due to size of lumps. I see some very slight improvement in the left foot. Somewhat flatter, but mostly you can tell there are separate nodules now rather than one lump. Right foot still looks very close to what it did when I started RT.

Is there a limit to how much RT you can get? I am getting scared now....on what to do next. I scheduled my next dose on March 14...7 weeks from the last one.

Oh how I wish there was a proven method to be effective for all of us!!!

wach:

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Depends how much radiation you received in the first round (the call it "dose"). Personally I would give it 2 - 6 months but you should discuss this with your doctor when you see him after your first round.

Wolfgang

debrr:

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... How long do you think I need to give the first round of RT time to show its effectiveness?

To Debrr...

Everyone is different, but for me it took several months to see the full effect of the RT on my nodules... Mine were smaller than yours I believe..I had two hard nodules the size of large marbles. The RT was with Dr. T. in Nov. 2009.

Fifteen months after RT, the nodules have shrunk and are almost non-existent. There is no further progression of my LD.

As far as how soon before you can go for another round of RT, I agree with Wolfgang, I would wait and give it a chance to see the full effect of the first round of RT.

Edited 02/18/11 23:47

Hello everyone!

Didn't want to bore anyone or sound whiny....I am doing better now though! Thanks for asking Di! Have you started RT in Germany yet?

For a couple weeks I had some shooting pains after RT and then some cramping after that (which I heard someone else mention) I kind of discovered that if any "cold" got on the arches of my feet then it would start.. I have tile floor so that didn't seem to help. I have gone back to thick socks and tennis shoes, even in the house. Now, on some days they just seem to throb....not all the time though. There have actually been a few mornings that I would get out of bed and not even notice my feet right away. Now that hasn't happened in a long time!

I appreciate everyone giving input on how soon I should go back for second round. As it turns out I was scheduled to go back March 14th. My inexpensive accommendations are booked up at least till April 29th, so I guess things happen for a reason!! That happening along with everyone suggestions to wait have convinced me to wait....THANKS!

I am ashamed to admit but it, but I don't understand a heck of a lot about this radiation....I just knew if I didn't do it, my feet were becoming so unbearable I would have no choice but surgery! I got my first nodule sometime in 2002 while I was going thru chemotherapy. I was so affected by chemo, I could not deal with feet for several years later. That turned out to be a good thing because the 2 podiatrists I saw then said I had to have surgery.

To make a long story short...I don't have much mental ability to study all this anymore....so that is why I find everyone's advice here so invaluable!!

Larry, I am afraid I don't understand what you mean by "momentum"...also, am I understanding you correctly that you should save a second round of RT for when regrowth might occur? Is there a limit to how much radiation one should have? Is there no chance I can have "normal" feet again????

Didn't mean to write a whole book here.....sorry.

Thanks to everyone for their valuable input and I wish you all well in your journey to be "cured"!

Debbie