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Starting RT in Boston
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03/03/11 02:05
fjellver 
03/03/11 02:05
fjellver 
Re: Starting RT in Boston

Hi,

Three down, two to go. I feel tired but the commute from my home state is long-a lot of train riding.
So far the only thing I've noticed is my skin is drier than normal and hands are sore.

The Rad Techs seem very good and efficient at MGH. It's nice I was assigned one chief Rad Tech, so I have continuity of care all week. I am to see Dr Delaney tomorrow and will ask him about the 6 week vs 3-4 month gap others have mentioned.
Does anybody know why that time has been increased in Germany?

Beth, Aetna has a policy in place for paying for this and reqiure certain procedure and CPT codes.
I can dig those up if you are interested, the Aetna people were actually helpful.
Also, the MGH nurse said they have been doing RT on DD, no LD-not sure why, since 2008 and have done over 12 people
with good results-similar to the german studies on early stage DD.
I hope this helps.

Fjellver

03/03/11 06:20
LindaM 
03/03/11 06:20
LindaM 
Re: Starting RT in Boston

Hi Beth,
I'm evaluating both Mass Gen and VA Commonwealth Univeristy. Both are about the same distance for me.
I am leaning towards VCU, Dr. Weiss has experience with LD as well as DD and I have both. I like the fact the she communicats freely through email and has answered so many questions for me. I feel like I've had a few consultations already.

Like you this is all happening so quickly, I hope we both make the right decision for treatment.

Linda

03/03/11 07:47
LubaM. 
03/03/11 07:47
LubaM. 
Re: Starting RT in Boston

fjellver:

Aetna has a policy in place for paying for this and reqiure certain procedure and CPT codes.
I can dig those up if you are interested, the Aetna people were actually helpful.


Fjellver
Hi Fjellver,

Good luck with your treatment, hope it is really successful. I had RT Nov. 09 at Scripps in LaJolla CA...it was very successful and the DD and LD are in remission in the treated areas, so far... although I do have new nodules in my left hand OUTSIDE of the treated area, which I will probably treat with RT in the future.

If you could post the procedure and CPT codes that Aetna approved, it would be very helpful for those of us who are having problems getting it approved with Medicare and Blue Cross...

Luba M.

03/03/11 18:18
marjorieb 
03/03/11 18:18
marjorieb 
Re: Starting RT in Boston

Thanks for the helpful information.
I notice there is a clinic in Colorado. Just so happens I will be near there in a couple of weeks, and again in three months.
I'm going to search the forum for anyone who has seen Dr. Kavanagh.
Did all of you need a referral from your GP? Did you call them directly, and ask how many people they had treated?
Just wondering about all these kind of details.

Wishing you all to be 'lump free',
Beth

03/04/11 05:37
LindaM 
03/04/11 05:37
LindaM 
Re: Starting RT in Boston

Hi Fjellver,

I would be interested in the Aetna Codes. Everytime I call Aetna I get a different answer. Clinical bulletins that pertian to the CPT and diagnostic codes. If you are using the codes suggested by MGH I have those..

Hope you treatments are going well.
Linda

05/08/11 14:48
fjellver 
05/08/11 14:48
fjellver 
Re: Starting RT in Boston

Hi,

Finished my 2nd round of RT in Boston one week ago. I was hoping for more improvement by now, although the Size of the nodules and cords are about the same, they seem alittle Softer to me. I had more pain during my 2nd round of RT than the 1st round. Dr Delaney said the regression is very slow and takes many months.

Questions for others that have gone thru RT for DD; how Long does the RT take to work and the DD to Regress?, and did anybody take N-acetyl cysteine(NAC) after the RT? I restarted NAC after my 2 weeks of RT, in hopes the antioxidant effects of the NAC will add to the effects of the Radiation Therapy, but I did not take NAC During the RT weeks.

Thanks,
Fjellver

05/08/11 22:54
LubaM. 
05/08/11 22:54
LubaM. 
Re: Starting RT in Boston

fjellver:
Hi,

Finished my 2nd round of RT in Boston one week ago. I was hoping for more improvement by now, although the Size of the nodules and cords are about the same, they seem alittle Softer to me. I had more pain during my 2nd round of RT than the 1st round. Dr Delaney said the regression is very slow and takes many months.

Questions for others that have gone thru RT for DD; how Long does the RT take to work and the DD to Regress?, and did anybody take N-acetyl cysteine(NAC) after the RT? I restarted NAC after my 2 weeks of RT, in hopes the antioxidant effects of the NAC will add to the effects of the Radiation Therapy, but I did not take NAC During the RT weeks.

Thanks,
Fjellver
I had RT in November 2009 for my DD in left hand and LD in left foot. In my case, I had 10 sessions of RT, five days a week, two weeks in a row. The RT stopped the progression of the disease in the radiated areas, so far.

On my hand I had multiple nodules on the palm and some dimpling of the skin. Some of the nodules are gone, some are smaller and softer but still there, but the itching and burning sensation that was constant, has completely stopped.

On the bottom of my left foot I had two large, hard, marble size nodules...I would say they are about 80 % gone.... The improvement of the RT took about 3-4 months.

05/11/11 17:15
lori 
05/11/11 17:15
lori 
Re: Starting RT in Boston

Hi there,

It has been almost 2 years since my last RT. Within 3 months of the first round I had some softening. After the 2nd round as the months went on the nodule shrunk in size and the cord kind of retracted into my hand. The most noticable thing was the fact that my hand lost it's tightness and the middle finger was more moveable. As the months progressed into over a year, the nodule totally disappeared and the cord has regressed into my palm and unless you look close you can not see the cord at all. If you search in past threads under my name and under "pictures of my hand from MRI to now" you will see exactly how my hand looked as time went on.

Lori

11/06/12 17:17
mrl 
11/06/12 17:17
mrl 
Re: Starting RT in Boston

Fjellver - How are you doing now, after treatment with Delaney? I was thinking of seeing him. - Mark

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