SOB

[Guest guest]

Yes, you all had me there on the SOB, not at all what I thought. LOL.

Congratulations Patti on your PCR being undectable. Some of us have had good

results with Sprycel and others couldn't tolerate the side effects. I

understand your dilema, Patti in wanting your cake and eating it, too. Perhaps

if you hang in there, the side effects will diminish in time. Some people are

able to hold their response and others could not. I am one of the latter. When

I first started Sprycel, I had an immediate response after the 1st month. Dr.

Talpaz was so sure I would respond, he asked to do another BMA a month after my

last. Of course I wanted to know, too, so I agreed. Bobby will tell you the

same, it is the best drug she ever took. She was in Phase I and I was in Phase

II but the protocol was quite different. She had week ends free of Sprycel and

still went to CCR in 7 months. The first thing they did to me was slam me with

the highest dose and I reacted badly, but keep in mind that not everyone does.

What's good for the goose is not always good for the gander. No, you are not

asking too much, but hang in there, we know that other drugs are coming down the

pipeline as this discussion continues as the newer drugs approach trial.

I can only speak for myself, Patti, I did not have any response as long as I was

on a low dose. I lost the response I had gained. There has even been talk of

using low doses of Gleevec added to low doses of Sprycel in combos. Anything is

possible and if we all hang in there, despite our side effects, you will see

newer and perhaps better drugs for all in that resistant category.

I did have a slight response to Inteferon, but there was no way I was going to

stay on it one day later that I had to, so I called Novartis myself and got on

the list. Even though I was unable to tolerate the higher INF doses like 9 mu,

I began to show a response on 3 mu. My counts were so suppressed they couldn't

get a good marrow smear on my BMB. I had a lot of BMB's back then, rather than

the BMA's I get today. I think they might have been overly cautious as I was

called " late chronic " and they wanted to monitor me closely. Well now, I'm on

" later chronic " . LOL. When I switched to Gleevec, my wbc was only l.0 and I

could only take 100 mg. Gleevec. INF was the first and best response I ever had

compared to anything else, certainly not on my first trial of all trans Retinoic

Acid + Hydrea. They should put that formula in the incinerater and burn it.

Useless as teats on a boar hog. My veins rolled over and collapsed on Hydrea

and it's still hard to find a place to put infusions. I think with patience

and a forum like this to air our complaints and successes, we will all see

better days. You can sense it when you think of the inroads they have made

during my CML lifetime anyway.

Take care of me first,

Lottie

How do you tell when you're out of invisible ink? ( )