RE: Choices - we've come a long way ...

[Guest guest]

Gale,

I am one Pegulated Interferon once a week. .5 mL

I have only taken 2 injections. I felt fantastic after the first one, for

about 4 days. (I take them Tuesday night before bed.) On Sat I started to

feel some joint pain, by Tuesday I was asking the pharmacist how many Aleve

I could take and not overdose. :-)

When I woke up Wednesday (this) morning, I felt like 300% better. As of

Wednesday evening, I feel about 150% better than Tuesday, but worse than

when I woke up. So, we'll see how it turns out at the end of the week.

The study is at U of M, but it is NOT a trial. From what I gather, a trial

pays for you to participate. A study on the other hand, does NOT. This is

why, in my opinion, more people aren't in it.

Dr. Erba (at UofM) says he has one guy who is off all meds and doing well.

but it is recent. I don't know how he is doing. I figure it is worth a shot.

And perhaps, if this doesn't work, by the time I get off of it, there will

be new meds.

Overall, besides the joint pain, I feel BETTER on the combo of medicine.

Although, it might be like going into a new restaurant when you are

starving. everything tastes delicious?... I was SO worked up about being

sick on the interferon and scared of all the side effects, that not having

them makes me feel better. :-)

Tammy

_____

From: divergale [mailto:no_reply ]

Sent: Wednesday, March 24, 2010 3:01 PM

Subject: [ ] Choices - we've come a long way ...

Is there actually a possibility of going med free??? !!!

I'll definitely check with Dr. Talpaz. Interferon, way back when, gave me a

partial remission prior to Gleevec - went from 98% bad cells down to 12% bad

cells in the first 8 months (before the side effects kicked in), then it

took more and more interferon (up to 9 mil units daily) and my bad cells

rose back up to 48% when I took my first dose of Gleevec. I was one of the

lucky ones who got to CCR in ~6 months.

This combo trial is definitely worth checking out. It looks like the combo

trial might be low dose interferon (curious how much an how often) combined

with Gleevec. I'll see what Talpaz can offer.

But has anyone gone off Gleevec entirely and kept their remission?

The combo trials sound like a 'Put the rat ears on again' time. A bit

risky.... but then... someone has to go first, right?

I've been so busy working and helping to raise money for LLS that I haven't

had time to see where the money is going! So glad I checked back in.

I can't tell you how happy I am to see '10 year anniversaries' here!

Yippeeeee!

More later,

Gale

[Guest guest]

Tammy,

I am jumping in on your conversation here. Wanted to wish you the best of luck

with this study. If I lived close by, and was on Gleevec, I would jump on this

in a heartbeat!

Beth

[ ] Choices - we've come a long way ...

Is there actually a possibility of going med free??? !!!

I'll definitely check with Dr. Talpaz. Interferon, way back when, gave me a

partial remission prior to Gleevec - went from 98% bad cells down to 12% bad

cells in the first 8 months (before the side effects kicked in), then it

took more and more interferon (up to 9 mil units daily) and my bad cells

rose back up to 48% when I took my first dose of Gleevec. I was one of the

lucky ones who got to CCR in ~6 months.

This combo trial is definitely worth checking out. It looks like the combo

trial might be low dose interferon (curious how much an how often) combined

with Gleevec. I'll see what Talpaz can offer.

But has anyone gone off Gleevec entirely and kept their remission?

The combo trials sound like a 'Put the rat ears on again' time. A bit

risky.... but then... someone has to go first, right?

I've been so busy working and helping to raise money for LLS that I haven't

had time to see where the money is going! So glad I checked back in.

I can't tell you how happy I am to see '10 year anniversaries' here!

Yippeeeee!

More later,

Gale

[Guest guest]

Hi Tammy,

I was taking Intron-A. My husband just reminded me that I was up to 11 million

units daily the last month before I quite interferon entirely. I'm wondering

what the difference, if any, between intron-a and peg interferon?

My first week of injections were the most difficult. After about 2 hours, was

running a 102 degree fever. Took my shots around 5:00pm (sometimes shooting up

at work in the bathroom!) Then I had 2 hours to run errands and get home before

it laid me out on the couch with fever. Then I'd wake up at about 1:00 in the

morning, take a tylenol to get my 102 degree fever down. Then get up at 7:00am

and go to work.

Same for about the first month and then it got easier. 1 mil units 3x week,

then after two weeks, 3 mil units x3, then slowly ever increasing for the total

14 month duration.

The good news: I never had so much as a sniffle while on interferon! It kept

all the bugs away... but, the downside was my appetite (non-existent) and after

awhile, everything tasted like cardboard. My husband became the 'smoothie king'

during that time -and he still makes the best smoothies around.

(And our friends ask for his 'Bill-aritas' too... hahaha!)

At your dose, hopefully, these side effects won't show and you'll get all the

benefits of the immune boosting power of peg! Remember you can read about what

happens to others, but it may not be the same for you. I remember a couple of

people who couldn't tolerate even 3 mil units of intron-A for a few weeks and

had to stop, while others had been on a much higher dose for years. Everyone

just has to see how they respond. That's why we have all these 2nd and 3rd

generation post Gleevec drugs - something for everyone.

Are you also on Gleevec with peg or another drug + peg? (sorry haven't had time

to catch up on everyone yet)

- gale