| Progression/regression and timing of RT treatment |
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12/10/2013 17:19
spanishbuddha  Administrator
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12/10/2013 17:19
spanishbuddha Administrator
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Re: Progression/regression and timing of RT treatment
nanshands:
Hello Tamara, Jolene, and S.B,
I think the three of you have all figured out that I am the gal that just returned from Germany and treatment with Prof. S that Jolene referenced. My husband and I had a horrible time getting back, several plane cancelations, extra night in Chicago, put on Stand-By, etc. all to say I am exhausted! Spent yesterday just resting, BUT after I unpack and take care of a few things I am anxious to share the input I received and my experience.
Sorry to hear that Nan, my flight back was cancelled, such fun, but a much shorter journey back. Looking forward to hearing your experience and thoughts.
Tamara, the treatment costs in Germany, either Hamburg or Essen are approximately €500+ for round 1 and €450 for round 2 (Euros). You would have to add travel, lodging, time from work, spending. I speak a little tourist German, but it's not needed at all. Hamburg is easy to get around, the underground system is easy or there is also a suburban train. If desirable you can hire bikes by the minute. Cycling is an accepted and tolerated way of getting around. Tolerated by cars and pedestrians alike. Central Hamburg can be walked end to end in 30-45 minutes if feet allow. There is plenty to do and sightsee in Hamburg but the better months are probably April through October. It can be expensive, or not. I have not been to Essen.
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12/10/2013 17:22
nanshands 
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12/10/2013 17:22
nanshands
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Re: Progression/regression and timing of RT treatment
Tamara,
Do not be anxious! If I understand you correctly you are headed for the second day of treatment? Not second round? If so go and do your second day of treatment. But, can you tell me what dosage you are getting of radiation?
Nan
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12/10/2013 17:23
Tamarakruse 
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12/10/2013 17:23
Tamarakruse
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Re: Progression/regression and timing of RT treatment
Thank you SB. I think I need to seriously consider getting my records copied and switching to Germany for round 2 on the foot I started yesterday, and a consultation.
Thanks so much,
Tamara.
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12/10/2013 17:25
Tamarakruse
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12/10/2013 17:25
Tamarakruse
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Re: Progression/regression and timing of RT treatment
Yes Nan, second day. And I need to talk with Dr T today and will update with amounts as I do not even know this yet! At this point, it would seem appropriate to finish this week, make copious notes on my feet, and reconsider. A walk on the beach might help me wrap my head around it all!
Tamara
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12/10/2013 17:33
Tamarakruse
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12/10/2013 17:33
Tamarakruse
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Re: Progression/regression and timing of RT treatment
Thank you Barbara, I will look and find an email. Good idea.
Tamara
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12/10/2013 17:34
Jolene 
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12/10/2013 17:34
Jolene
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Re: Progression/regression and timing of RT treatment
Hello,
Thanks Nan for the update. Nan, did he tell you how do determine if one is in the proliferating stage?
At what time will you know its time to return for RT on the 3 limbs he did not treat?
If we in the USA have to educate ourself about the proliferating stage, how then, are we to figure this part out?
Also if we have had RT to early and it has not stop the progression what then?
Is radiation allowed again?
Speaking for myself:
To the untrained eye no one would even know I have DD. No visible cords or nodules. Just pits and pain. Yet it was confirmed I do have the disease. The radiation I recieved 3 months ago did stop the pain and no new signs have appeared. But with this new found information I'm unceratin what will happen next. Its too late for me anyways as I have already begun the radiation treatments. I have no clue if the radiation I recieved was given during the proliferating stage.
I can only assume that I am not alone in this. I highly doubt if the oncologist/doctors in the USA know this also.
So what are we to do??? Everyone fly to Germany? Or get treated at the wrong stage here in the states?
This would make since as to why some peole are getting more nodules just months after radiation.
This is not good news!
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12/10/2013 17:41
nanshands
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12/10/2013 17:41
nanshands
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Re: Progression/regression and timing of RT treatment
Tamarakruse:
And Nan, I am glad to hear that the one hand is already feeling better, and I can only imagine how hard it must be to not have help with the other and to think of going back possibly many more times. How will
You know when to, I wonder, after the second round check? Are you considering other options with your other hand?
Glad to hear you are feeling hopeful and glad you were able to see him, and get the best info. It is very confusing tho still to wonder at how he arrives at his conclusion that the time IS right.
Tamara
The short answer and, to be honest the most accurate, to your question above as to how does Prof. S arrive at his conclusion that the time IS right? Is: 25 plus years of experience, clinical studies, published studies, and having seen and treated well over a 1,000 or more patients with, I believe, a 90% success rate.
I can offer personal experiences and what he saw in my state of disease, which I will later. But, he is the doctor, and only he can diagnose you or anyone else.
Nan
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12/10/2013 17:47
Jolene
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12/10/2013 17:47
Jolene
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Re: Progression/regression and timing of RT treatment
Hello Spica,
You mention your insurance would pay 70% to be treated by ProfS.
Is he who treated you?
How where you able to find out about your insurance paying?
Who is your insurance with?
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12/10/2013 18:35
nanshands
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12/10/2013 18:35
nanshands
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Re: Progression/regression and timing of RT treatment
Jolene:
Hello,
Thanks Nan for the update. Nan, did he tell you how do determine if one is in the proliferating stage?
At what time will you know its time to return for RT on the 3 limbs he did not treat?
If we in the USA have to educate ourself about the proliferating stage, how then, are we to figure this part out?
Also if we have had RT to early and it has not stop the progression what then?
Is radiation allowed again?
Speaking for myself:
To the untrained eye no one would even know I have DD. No visible cords or nodules. Just pits and pain. Yet it was confirmed I do have the disease. The radiation I recieved 3 months ago did stop the pain and no new signs have appeared. But with this new found information I'm unceratin what will happen next. Its too late for me anyways as I have already begun the radiation treatments. I have no clue if the radiation I recieved was given during the proliferating stage.
I can only assume that I am not alone in this. I highly doubt if the oncologist/doctors in the USA know this also.
So what are we to do??? Everyone fly to Germany? Or get treated at the wrong stage here in the states?
This would make since as to why some peole are getting more nodules just months after radiation.
This is not good news!
Hi Jolene,
Just lost, once again, my reply to your questions above when I went to post. AHHH! I always copy and paste, but in my haste didn't this once. I will get back to you.
Nan
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12/10/2013 20:16
Jolene
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12/10/2013 20:16
Jolene
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Re: Progression/regression and timing of RT treatment
Thanks Nan,
By chance did Prof S tell you how "YOU" could make the determination 'Yourself' as to when you are in the proliferating fibroblast stage? I am wondering, Did he share that information? Did he happen do give you any clues on what to look for? How would one know when to head to Germany? Apparently its not a cut and dry thing. But did he give you anything to go on?
Thanks for sharing everything that you have shared.
I am glad you made home safe and are resting.
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