Re: Radiation: Elaine and/or Janice or anyone

June 12, 2003

In a message dated 6/11/2003 10:07:49 AM Central Daylight Time,

bzbee62@... writes:

> I had 10 treatments over a 2 week period Monday-Friday I didn't lose my

> hair thank god I already look freaky enough without that The actual treatments

> don't hurt The smell leaves alot to be desired the only way I can describe it

> is burnt chlorine I was sick to my stomach so I was given some meds for this

> The treatments are very quick the longest part of the whole thing was the

> CT scans, xrays and the making of the mask I took off while having the

> treatments along with the driving problems from my eyes being irritated and

the

> nausea >>

I have to drive about an hour and a half one way. Is it unadvisable for me

to go alone? I can drive okay; I just close one eye:-) And drive very slowly.

Do you know if the treatments can be spread out over a longer time and still

have the same effect? Like twice a week instead of 5 days a week. I have to

work, and it wouldn't be possible to go there every day and still get to

work. I work as a head trainer in a restaurant and while they will schedule

around

me, there are still certain hours of the day I am required to be there or I

might as well not be there at all. And I simply can't afford to miss two weeks

of work.

Making of the mask?

Were you eyes irritated from the treatments themselves?

How long ago did you have it? Did it help significantly?

I'm sorry for all the questions. This is just so complicated and I'm trying

to get as much info as possible before I see the radiation oncologist on next

Wednesday. Any suggested questions for him besides HOW MANY OF THESE he's

done???

And I'm still thinking about other options too. Just not entirely sure what

they are. I've read that with the disease in the active phase, some doctors

also prescribe corticosteroids during radiation and sometimes ATD's. Does that

make any sense to any of you?

Elaine: I did read on a Mayo Clinic site that the efficacy of orbital

radiation has not been proven. Is that the study you mentioned? It was dated

just

this year. Have they refuted that study?

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Now considering

other options.

June 13, 2003

Hi Terri,

It seems Mayo Clinic received so much bad press for that first study they're

trying to save face. I haven't seen their latest study, but sometimes they

continue to report on studies that are on-going. The criticized study had about

42 patients. Unless the new study has a large number of patients, like at least

300 patients I wouldn't rely on it to much. But it is good to learn all you

can. I think you're finding you can hear opposing views on most every aspect of

Graves' disease.

In most reports I've seen the treatments were carried out over 10 weeks and I

think there is a benefit to this. Take care, Elaine

June 13, 2003

Hi Terri,

It seems Mayo Clinic received so much bad press for that first study they're

trying to save face. I haven't seen their latest study, but sometimes they

continue to report on studies that are on-going. The criticized study had about

42 patients. Unless the new study has a large number of patients, like at least

300 patients I wouldn't rely on it to much. But it is good to learn all you

can. I think you're finding you can hear opposing views on most every aspect of

Graves' disease.

In most reports I've seen the treatments were carried out over 10 weeks and I

think there is a benefit to this. Take care, Elaine

June 13, 2003

Terri,

I'm not exactly sure if they can spread out the treatments I was

not given that option I would check with the radiation oncologist on

that. The treatments caused my eyes to be very red and dry I used

alot of refresh gel It has been exactly one month today since I had

the last treatment, vision wise I have not had any improvement but

the swelling and pressure is soooo much better I see the surgeon

next month to discuss whats next Like I said before I would do it

again because personally I believe it has helped I no longer have to

tape my eyes shut at night which is a blessing in itself As far as

the mask they take measurements and do xrays and CT scan so they see

whats there and can then target the correct area then they make a

mask conformed to your

head and mark the correct area to target they also make blocks which

block out areas that can be harmed from the radiation They would do

xrays about every other treatment to make sure the area was still

correct Your Doc

should explain all of this You really should try to get your levels

as normal as possible because my eyes are so much worse when I'm

hypo I hope this helps

Good Luck to you

Janice

> In a message dated 6/11/2003 10:07:49 AM Central Daylight Time,

> bzbee62@h... writes:

>

> > I had 10 treatments over a 2 week period Monday-Friday I didn't

lose my

> > hair thank god I already look freaky enough without that The

actual treatments

> > don't hurt The smell leaves alot to be desired the only way I

can describe it

> > is burnt chlorine I was sick to my stomach so I was given some

meds for this

> > The treatments are very quick the longest part of the whole

thing was the

> > CT scans, xrays and the making of the mask I took off while

having the

> > treatments along with the driving problems from my eyes being

irritated and the

> > nausea >>

>

> I have to drive about an hour and a half one way. Is it

unadvisable for me

> to go alone? I can drive okay; I just close one eye:-) And drive

very slowly.

> Do you know if the treatments can be spread out over a longer

time and still

> have the same effect? Like twice a week instead of 5 days a

week. I have to

> work, and it wouldn't be possible to go there every day and still

get to

> work. I work as a head trainer in a restaurant and while they will

schedule around

> me, there are still certain hours of the day I am required to be

there or I

> might as well not be there at all. And I simply can't afford to

miss two weeks

> of work.

>

> Making of the mask?

>

> Were you eyes irritated from the treatments themselves?

>

> How long ago did you have it? Did it help significantly?

>

> I'm sorry for all the questions. This is just so complicated and

I'm trying

> to get as much info as possible before I see the radiation

oncologist on next

> Wednesday. Any suggested questions for him besides HOW MANY OF

THESE he's

> done???

>

> And I'm still thinking about other options too. Just not entirely

sure what

> they are. I've read that with the disease in the active phase,

some doctors

> also prescribe corticosteroids during radiation and sometimes

ATD's. Does that

> make any sense to any of you?

>

> Elaine: I did read on a Mayo Clinic site that the efficacy of

orbital

> radiation has not been proven. Is that the study you mentioned?

It was dated just

> this year. Have they refuted that study?

>

> Terri

> Graves disease 1979; treated with RAI; exothalmia 1982, treated

with IV

> steroids; since then on one or another form of replacement

hormone. New flare up

> of TED with severe double vision, swelling in intraocular muscles

and

> inflammation in August of 2002. Currently hypoactive. Treated

TED with prednisone.

> It worked while on prednisone, but TED came back worse after. Now

considering

> other options.

>

June 13, 2003