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Starting RT in Boston
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fjellver 

fjellver 
Starting RT in Boston

Hi,

Starting RT in Boston at MGH with Dr. Delaney's group tomorrow.
My preliminary experience so far, including mapping, has been very positive.
I will give periodic reports.
Thanks to Wolfgang and others for your support.
This website has been awesome for me mentally. I have used it to find other therapies and to
hear about other peoples' experience. None of my local Docs had ever heard of RT for DD and LD.

Thanks Again,
fjellver

lauriw 

lauriw 
Re: Starting RT in Boston

Good luck with your treatment. What will your protocol be? Who is your insurance carrier and did they approve the treatment?
LauriW

fjellver 

fjellver 
Re: Starting RT in Boston

Electron radiation 3G X 5 consecutive days. If all goes well, it is repeated in about 6 weeks.
Insurance is Aetna and yes they approved it.
Thanks for your support.
Fjellver

lauriw 

lauriw 
Re: Starting RT in Boston

thanks, good luck to you. I have heard a lot of people are now doing the second treatment in 3-4 months. How did you decide on your protocol? Has your doctor done many of the RT for DD?
LauriW

Larry 

Larry 
Re: Starting RT in Boston

fjellver:
Electron radiation 3G X 5 consecutive days. If all goes well, it is repeated in about 6 weeks.
Insurance is Aetna and yes they approved it. Thanks for your support. Fjellver

Hi fjeller,

if the RT institution where you are going to be treated is not well experienced with RT of DD I would prefer to adhere to the original RT prescription from Prof. Seegenschmiedt in Hamburg (Germany). In my case he applied a schedule of 2 RT series of 5 x 3 Gy (Monday thru Friday) and a break of 12 weeks or 3 months inbetween; a break of 6 weeks may be too early to have all the side effects
from the first RT round completely subsided or there may be additional reasons which I personally
don't know ... You may have to ask for them.

Best regards and good luck for you and the doctors who take the challenge of first RT treatment ...

Larry

Edited 02/28/11 19:01

lori 

lori 
Re: Starting RT in Boston

Lauri,

Were you able to get any information concerning the differences between the protocol I had (6-8 weeks) interim versus the 12 week from Wolfgang? As you know mine was the 6-8 week break.

Lori

lauriw 

lauriw 
Re: Starting RT in Boston

Lori,
I sounds to me like Dr. S is now doing the 3-4 month break. Everyone that is currently getting the treatment in Germany is saying that.
Lauri

marjorieb 

marjorieb 
Re: Starting RT in Boston

fjellver:
Electron radiation 3G X 5 consecutive days. If all goes well, it is repeated in about 6 weeks.
Insurance is Aetna and yes they approved it.
Thanks for your support.
Fjellver


Fjellver,

So glad to know Aetna covers this! I'll be rooting for you to have success, and waiting to see your posts. Please do keep us updated.
Did you have any difficulty getting Aetna to approve, or was it easy? I'll be having this conversation with them, myself and want to be prepared.

Thanks,
Beth

LindaM 

LindaM 
Re: Starting RT in Boston

Beth,

Have you picked a facility yet?

Linda

marjorieb 

marjorieb 
Re: Starting RT in Boston

LindaM:
Beth,

Have you picked a facility yet?

Linda

Linda,

I have not. This has all happened (continues to happen) so quickly. I'm still looking at everyones' stories. Do you have recommendations? I appreciate any input.

Thanks,
Beth

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