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Heading back to Germany
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09/02/2012 03:10
switcombe 
09/02/2012 03:10
switcombe 
Heading back to Germany

It's been 3 months since my first series of RT. This coming Tuesday I'm returning to Germany to have the second series. My left hand no longer bothers me in any way - no pain, no itching, etc. But my right hand seems to have developed a cord in my palm that wasn't there before, at least not as prominently. It's slightly painful. My nodules have hardened with no change in size. That's my assessment - it will be interesting to see what Prof. S. finds in the way of change for better or worse.

Still uncomfortable with the idea of radiation - did any of you count the seconds just to be sure the treatment wasn't too long?

Sharon

09/02/2012 16:13
Lanod 
09/02/2012 16:13
Lanod 
Re: Heading back to Germany

Sharon,

All the best for your 'round 2 treatment. Please let us know of Prof. S's assessment on your progress.

Don't worry about the radiation equipment - that is all very precisely calibrated and certified. It is our own biology that is unpredictable - not the electronic equipment!

I was wondering about your Tuesday start - will the actual treatment be over 5 consecutive days?

Thank you again for your very informative reports on your earlier trip - and wishing your every success on the trip.

Lanod

09/02/2012 16:57
switcombe 
09/02/2012 16:57
switcombe 
Re: Heading back to Germany

Lanod:
Sharon,

All the best for your 'round 2 treatment. Please let us know of Prof. S's assessment on your progress.

Don't worry about the radiation equipment - that is all very precisely calibrated and certified. It is our own biology that is unpredictable - not the electronic equipment!

I was wondering about your Tuesday start - will the actual treatment be over 5 consecutive days?

Thank you again for your very informative reports on your earlier trip - and wishing your every success on the trip.

Lanod
Lanod, it's not so much the equipment as it is human error in inputting the correct data.

I actually begin my treatments on Wednesday afternoon and finish the following Tuesday. So, no, my treatments will not be on consecutive days. I do realize that that's not the preferred protocol; however, that's what worked best for my travel plans.

Thank you for your encouragement.

Sharon

09/02/2012 18:25
Lanod 
09/02/2012 18:25
Lanod 
Re: Heading back to Germany

Sharon,

I was curious about the 5 consecutive days as I had a first round RT in July and they also used Wed/Thur/Fri/Mon/Tue. I was advised that it is considered acceptable to do 3 days/weekend/2 days for RT if 5 days in a run is not convenient. However (they say..) 2 days/weekend/3 days is not so good.

Re. 'human error' in setting up the RT parameters - there will be no room for error here - so please put this part of the problem out of your equation!

In any case: Bon Voyage!

Lanod

09/03/2012 13:32
MerryMom 
09/03/2012 13:32
MerryMom 
Re: Heading back to Germany

Hi Sharon,

Whenever I read your posts, they sound like they're coming directly out of my brain! I finished my second round of RT six weeks ago. Arriving for this round of treatment, I was sure I was considerably less stressed as I knew what to expect. Yet, the instant the techs walked out of the radiation room, my heart began racing. And the moment the machine began to whir, I began counting. Since the number of seconds seemed different each day, I assumed that my counting was off due to my level of tension. And through those seconds, the background voice in my head kept asking if I was doing the right thing. Yet the logical side of my brain, the part that has absorbed all of the information provided by everyone here on this site, kept reminding me that RT just makes sense...no question about it.

Six weeks out from completion, I see my hand still changing every single day. I seem to be in the minority having had pain and swelling after RT. But each day, my hand is noticeably better--less swollen and less sore. My primary nodule is very tiny now. A second nodule--one that was questionable--is larger and at the surface, but quite hard. I began DD with three cords before any palpable nodules. The cords are not as pronounced now. And my one palm is redder than the untreated hand.

That little voice that pops up to second guess my decision to have RT continues to get loud now and then. Whenever that happens, I take an hour and re-read postings on this site. Or sometimes I will private message someone here and they generously take the time to calm me down. That always reaffirms that having RT was absolutely, positively the right decision. And now that I can see and feel a cord developing in my untreated hand, I will surely be going through this process all over again. But, since my worrying nature will always be prominent, I'm sure I will be asking the same questions as I did the first time. We can be our own worst enemies sometimes!

Good luck on your trip to Germany. Hope you are planning some fun sightseeing activities. Don't forget those comfortable shoes!

Best,
Amy

09/03/2012 17:03
switcombe 
09/03/2012 17:03
switcombe 
Re: Heading back to Germany

Thank you, Amy, it's comforting to have someone who understands my worries! Another thought that plagues me is, maybe this disease would have gone into remission on its own if I'd just left it alone. I've heard that, for some people, it just spontaneously goes away - no more nodules, no more cords, no more symptoms. But I just couldn't take the chance that for me it might continue to progress to contraction, hence, my decision to try to stop it.

I had quite a bit of pain after my first round of treatment in my right pinkie. My palms are very dry now, but interestingly, my fingertips still sweat - shows how precise that electron beam is.

Yes, I'm bringing comfortable walking shoes this time!

Sharon

09/04/2012 22:21
stephenp 
09/04/2012 22:21
stephenp 
Re: Heading back to Germany

I also had my first treatment series split over a 7 day period with a break on Sat/Sun. At the time I did ponder on whether this was likely to be important and asked the question of the radiologist. He said he did not think it would be an important factor which was my intuitive thought as well. However I have seen no data on this. I would be very surprised if there was a difference between 3 treatments followed by 2 days without treatment then 2 further treatments and the reverse.

Regarding the risk, it is the total cumulative dose that is most important.

I too watched the clock but it is worth remembering that you are totally in the hands of the radiology technicians so look at the reputation of the clinic, the radiologist and the operating procedures.

09/05/2012 05:37
RichSF 
09/05/2012 05:37
RichSF 
Re: Heading back to Germany

Hi
I'm on my way back to Hamburg for my second RT phase. I will be there on the week of Sept 17. Is anyone else going there at that time?
My 1st RT phase was at the end of April and it'll be a 4.5 month spread. I checked with Dr S about this and he said that a 3 to 6 month spread is ok. Here is what he said

"The only Long-Term Evaluation which I recently conducted was that 3 - 6 months seem to be the most favourable gap between the two RT Series ; beyond this Intervall the outcome get's worse.
So if it is 4 months that's fine ...

Prof Seegenschmiedt "

So far my hands are in good shape. At this point I have no functional limitations and only minor cord development in my palms. As a result of my proactive behavior, I feel confident that I will do okay as time goes by.

So it's off to Germany for another radiation vacation... kindly let me know if any of you will be there
Rich SF

09/05/2012 07:39
GaryBall 
09/05/2012 07:39
GaryBall 
Re: Heading back to Germany

RichSF:
Hi
I'm on my way back to Hamburg for my second RT phase. I will be there on the week of Sept 17. Is anyone else going there at that time?
My 1st RT phase was at the end of April and it'll be a 4.5 month spread. I checked with Dr S about this and he said that a 3 to 6 month spread is ok. Here is what he said

"The only Long-Term Evaluation which I recently conducted was that 3 - 6 months seem to be the most favourable gap between the two RT Series ; beyond this Intervall the outcome get's worse.
So if it is 4 months that's fine ...

Prof Seegenschmiedt "

So far my hands are in good shape. At this point I have no functional limitations and only minor cord development in my palms. As a result of my proactive behavior, I feel confident that I will do okay as time goes by.

So it's off to Germany for another radiation vacation... kindly let me know if any of you will be there
Rich SF


I will be there in spirit Rich.

Good luck


Gazza

09/06/2012 12:19
lori 
09/06/2012 12:19
lori 
Re: Heading back to Germany

Amy,

I am glad that all is going well. Your RT experience closely resembled my own. Hopefully your DD will go into remission like mine did. I never second guessed my decision. I did all my worring up front. Everytime I look at my hand and see the miracle of RT, how my nodule disappeared, and how the cord recessed into my hand, I am eternally grateful for this forum.

Keep me posted as to how your hand improves and take care,

Lori

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