Re: GOOD NEWS! and other misc. topics

[Guest guest]

Sara - Great news!! I'm so thrilled for you. I'm sure the sides will pass

very soon. The only side that might remain somewhat is ye olde brain fog.

I've heard this mentioned a couple times, but I stress, not with everyone!

Maybe it's because we've had it for so long, it becomes hard to distinguish

clear thinking from foggy. Just a thought. Anyway, all " healthy " people

have stupid days too, right?

I'm a 2b and my doctor told me we'll go the whole 48 weeks, if need be. He's

a very good doctor at NYU in Manhattan. He was referred to us by my

husband's friend, who is the Head of Infectious Blood Diseases, also at NYU.

The difference in my tx is that I'm doing the interferon (3 mil) every day.

Of course, I'm taking the ribavirin as well (1000/day). Wouldn't this be the

same as the Pegasys - steady flow?

I will definitely ask re: geno 2 - 24 wks or 48 wks? My next appointment is

a little more than week from now.

Peace,

Jane

[Guest guest]

Hi Jane,

Thanks for your response to my news....I really appreciate it. Brain fog is

one side effect that I didn't get too badly at all....maybe I'm saying, just

a little teeny bit more than before treatment, " what was I just saying, or

what we're just talking about " after a minor interruption.....nothing too

serious.

I can't imagine going a full 48 weeks, since the 24 weeks were kind of rough

for me, so I hope you make it through without too many problems. I also

can't imagine doing those interferon injections every single day....3 times a

week was bad enough. I was doing 1200 mg of Ribavirin daily until week 20

when my doc took me down to 1000 mg because my hemoglobin had dropped below

10 at week 12 and was down to 8.7 by week 20. Two weeks later, at week 22, I

was back up to 10. Anything below 10 for hemoglobin is supposed to be cause

for alarm, but I guess it was just below that, like 9.6 or 9.8 in January and

February and he didn't say anything. He started me at the beginning of

treatment at 1200 mg because I weighed 170 lbs., right at the cut-off point

of whether you get 1200 or 1000, and he's aggressive. Since I gradually lost

10 to 12 pounds over the course of treatment I probably should have been cut

back a little earlier than that.

I don't think doing daily alpha interferon is just like doing the pegylated

version. Peg is only one shot a week, for starters. It's time release

effect may provide more constant medication, like the daily, but one shot a

weekly vs. one shot daily is a huge difference to me!

I am definitely going to ask my doc about the 24 weeks vs. 48 weeks for type

2B protocol when I see him next week on the 18th. I'm taking a chance that

he might say, " oh yes, we could or should put you back on to keep you going

for 48 weeks total just to make sure this works " , which would be terrible to

hear, but fortunately that's seemingly unlikely since 5 weeks ago he didn't

say anything about doing that to me. I do want the latest, best treatment

plan that's appropriate for me, so I'll have to take my chances I guess.

Whew, it's been 8 days since I ended treatment and I keep getting this waves

of feeling really hot.....since I almost 46, I'm not sure if this is a

lingering, slightly changed side effect, or am I pre-menopausal and starting

to get hot flashes!! How would one tell the difference?

Take care Jane, and everyone,

Sara

(this was a response to) :

Date: Tue, 11 Apr 2000 01:11:43 EDT

From: Jane2370@...

Subject: Re: GOOD NEWS! and other misc. topics

Sara - Great news!! I'm so thrilled for you. I'm sure the sides will pass

very soon. The only side that might remain somewhat is ye olde brain fog.

I've heard this mentioned a couple times, but I stress, not with everyone!

Maybe it's because we've had it for so long, it becomes hard to distinguish

clear thinking from foggy. Just a thought. Anyway, all " healthy " people

have stupid days too, right?

I'm a 2b and my doctor told me we'll go the whole 48 weeks, if need be. He's

a very good doctor at NYU in Manhattan. He was referred to us by my

husband's friend, who is the Head of Infectious Blood Diseases, also at NYU.

The difference in my tx is that I'm doing the interferon (3 mil) every day.

Of course, I'm taking the ribavirin as well (1000/day). Wouldn't this be the

same as the Pegasys - steady flow?

I will definitely ask re: geno 2 - 24 wks or 48 wks? My next appointment is

a little more than week from now.

Peace,

Jane

[Guest guest]

In a message dated 4/11/00 9:20:24 PM Eastern Daylight Time, srw1954@...

writes:

<< Whew, it's been 8 days since I ended treatment and I keep getting this

waves

of feeling really hot.....since I almost 46, I'm not sure if this is a

lingering, slightly changed side effect, or am I pre-menopausal and starting

to get hot flashes!! How would one tell the difference?

>>

Sara, it's time for another doctor's appointment! haha! The best way to

really know that is to go see your gynecologist. He or she could check your

hormone levels to be sure. This might be the very first stage of menopause

or not.

This just occurred to me - were you cold on tx? I have to dress much warmer

than I normally would. I feel like my blood is not doing it's normal job

keeping me warm. Maybe you're just feeling the good regular blood returning.

It's a weird thought, I know. Hey, anything's possible with this wacky

disease, right?

Take care,

Jane

[Guest guest]

In a message dated 4/11/00 9:20:24 PM Eastern Daylight Time, srw1954@...

writes:

<< Whew, it's been 8 days since I ended treatment and I keep getting this

waves

of feeling really hot.....since I almost 46, I'm not sure if this is a

lingering, slightly changed side effect, or am I pre-menopausal and starting

to get hot flashes!! How would one tell the difference?

>>

Sara, it's time for another doctor's appointment! haha! The best way to

really know that is to go see your gynecologist. He or she could check your

hormone levels to be sure. This might be the very first stage of menopause

or not.

This just occurred to me - were you cold on tx? I have to dress much warmer

than I normally would. I feel like my blood is not doing it's normal job

keeping me warm. Maybe you're just feeling the good regular blood returning.

It's a weird thought, I know. Hey, anything's possible with this wacky

disease, right?

Take care,

Jane