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7th Day of RT and 3 more to go!
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01/26/2011 04:46
debrr 
01/26/2011 04:46
debrr 
7th Day of RT and 3 more to go!

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!!!

01/26/2011 04:59
wach 

Administrator

01/26/2011 04:59
wach 

Administrator

Re: 7th Day of RT and 3 more to go!

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

01/26/2011 05:51
debrr 
01/26/2011 05:51
debrr 
Re: 7th Day of RT and 3 more to go!

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:
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

01/26/2011 05:56
wach 

Administrator

01/26/2011 05:56
wach 

Administrator

Re: 7th Day of RT and 3 more to go!

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

01/30/2011 21:55
debrr 
01/30/2011 21:55
debrr 
Re: 7th Day of RT and 3 more to go!

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


02/18/2011 21:18
Cyclist 
02/18/2011 21:18
Cyclist 

Re: 7th Day of RT and 3 more to go!

Hi Debbie
Let us know how you are getting along - I'm hoping you've seen further improvement?
All the best
Di

02/18/2011 21:46
LubaM. 
02/18/2011 21:46
LubaM. 
Re: 7th Day of RT and 3 more to go!

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

02/19/2011 15:26
Larry 
02/19/2011 15:26
Larry 
Re: 7th Day of RT and 3 more to go!

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




Clearly WAIT 3 Months At Least ... Then decide for a second round: 20 Gy is a lot, and 2Gy single dose
eventually not sufficient; you may need a second round like "allisun" because of later recurrence ...

I have never heard that doctors are giving 20 x 2 Gy ? That's 40Gy total ! I would opt for a higher single
dose like 3 Gy and leave this to a momentum which tells ... yes, it's progression, something should be done!

Larry

02/19/2011 20:37
debrr 
02/19/2011 20:37
debrr 
Re: 7th Day of RT and 3 more to go!

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

02/20/2011 16:37
Cyclist 
02/20/2011 16:37
Cyclist 

Re: 7th Day of RT and 3 more to go!

Hi Debbie
Thanks for letting us know how you're going. I can definitely understand that if you had an experience with chemo you would have needed a breather!

Great to hear that your feet are not bothering you when you get up in the morning! A good sign!

No, I haven't had RT yet. I originally planned it earlier but then competing work commitments got stressful, so it was best to move the date back a bit. I'm looking forward to it, but at the same time, it's a big hassle getting to Germany from here!

Keep in touch
Di

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