Re: Re: hello everyone from a MAJOR lurker

[Guest guest]

HI NANCY, I STARTED STI571 TRIAL IN FEB. 2000 ALSO, AND I HAD TO LIVE THERE

FOR 2 MONTHS. ISN'T IT FUNNY, WE NEVER MET? I NEVER MET ANYONE ELSE,

EXCEPT JUDY OREM. I THINK PERHAPS BECAUSE I MET SO MANY IN HOUSTON, AND

NOT OREGON, WAS THE DIFFERENCE IN SIZE IN THE TWO PLACES. IN HOUSTON

SOMETIMES YOU COULDN'T MOVE FOR THE PATIENTS, BUT IN PORTLAND, IF THERE WERE

2 PEOPLE IN THE WAITING ROOM, THAT WAS A LOT. THE NICE THING ABOUT IT WAS,

YOU SURE DID GET IN AND OUT, WHEREAS MY FIRST DAY AT MDACC WAS A 9 HR. DAY!!

I KNEW WITH DR. DRUKER IF I BOOKED A 10 AN BMA I COULD MAKE THE 1 PM

FLIGHT BACK TO CLEVELAND. NO WAITING. HOPE ALL IS WELL WITH YOU, BOBBY

On Sun, Apr 26, 2009 at 8:57 PM, Cogan <ncogan@...> wrote:

>

>

>

> In regards to switching from one medication to another, even Dr. Druker

> would tell us (my husband and I), that unless substantial proof could be

> made, WHY would anyone wish to switch a drug when you need these in your

> arsenal? If Gleevec is working, despite side effects, why change it IF YOU

> MAY need to switch one day because of failure...not side effects.

> ___________________

>

> Hi ,

> You know that I have been a Dr. Druker patient even longer than you, since

> Feb. 2000. I have to disagree with some of the things you have written as

> 'absolute statements' from Dr. Druker. I think when he is talking to you, he

> is mainly talking about YOUR case....and you had the little twist right from

> the start that you had another medication that you also had to take daily.

> Also, early on when you were having all the bad side effects (before they

> tested for blood level and dropped your dose) there really was not another

> drug for you to switch to if I am right about the timing? It took a long

> time for the 2nd drug to become available in trials, and later on the open

> market.

>

> What Dr. Druker has said to me is not the same as he said to you.

> In my case, Gleevec did not stop working.....I just had a suboptimal

> response (major cyto response only). I never had a mutation and always good

> stable blood work. When I had the option of a Sprycel trial, he said I could

> go either way. I was concerned because Gleevec was working and I tolerated

> it well. He said, try the new drug and if you do not like it as well (QOL),

> you can always go back to Gleevec. There is nothing that keeps you from

> going back to a drug that was working for you...this is not a one-way road

> that people seem to think. Just because you leave one drug that does not

> mean that you can't use it again in the future. We are not using up our

> options...unless we find that drugs actually stop working for us.

>

> I recently had a bout of pleural effusion....he was ready to pass me along

> to Tasigna....but I felt I had caused the PE myself by eating grapefruit 3

> mornings in a row (then the PE popped up the next day). I told him I wanted

> to try to stay on Sprycel and in the trial I am in and he said that was

> fine. My dose was dropped a bit and we are monitoring but I don't expect to

> have more PE and have not to date. Now we need to see if the lower dose

> (80mg vs 100mg) is as effective.

>

> So, I think what Dr. D told you was mainly about your situation and what

> the options were at the time. He knows his patient's history very well. I

> know he hears about people who do have one little problem with Gleevec and

> their (usually) local onc switches their drug too quickly, so they never

> know if Gleevec is effective for them or not.

>

> Also, to the person (from downunder I think) who said that maybe he favors

> Gleevec because he developed it.....well, look at my history with him. He

> told me right from the start that he would always do what was best for me.

> Also, OHSU is a major cml center and he is running trials for all the

> approved drugs (before they were approved and continuing). , I think

> some of the objections to your post was you were making statements as though

> they were for everyone...but any good doctor is going to individual his

> recommendations, which is why what he tells me is different than what he

> tells you.

>

> In re-thinking my situation, I have an inkling suspicion that he may even

> want me to try Tasigna, to see if I get an even better response (my pcr is a

> bit stuck).....I will ask him next visit.

>

> This is a good list....you should post here occasionally with your ideas

> and contributions.

>

> C.

>

>

>

>

--

a Doyle/dob 1929

DX 1995/Hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/06 - Sprycel Trial, MDACC, Dr. Talpaz

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz