Re: Sprycel not for everyone

[Guest guest]

> Dear ,

I still have the same clock I used to set at 3:00 A.M. and P. M. every day to

take my little yellow pill. I still remember when I stood in the middle of the

room and everyone watched me take my first pill. That part I didn't like, but

it's something you can live with. Everyone isn't as lucky as that snow bird

from Canada who comes to WPB ever year and soaks up our sunshine. I want to

tell him that all excess sunshine from now on will be used for our renewable

energy.

> I saw my new oncologist again today and he said if ever I get off SKI, he

would stronly suggest my switching to Tasigna as it will soon override Gleevec

in the drug of choice.

> Wish you luck, dear heart,

> Lottie

__________________________________

Hi Lottie,

I don't expect to have a problem at all with the fasting because of my usual

eating schedule. I will take it at 11:30 or 12 am and pm. I sleep in, don't like

an early breakfast but can eat an hour before that dose.......then I don't

usually eat lunch until 3pm and dinner at 8pm.....so none of my usual meals is

interrupted. I always watch the 11pm news......so no problem taking the drug

before bed.

I am glad you have a new oncologist who is looking into things for you. Tell him

your friends say you should be treated like a queen!

I have a good feeling about Tasigna for me.....Gleevec did work but it was not

strong enough to knock out my ph+ cells (took me from 100% down to

35%).........so with Tasigna being 30 x stronger maybe it can take those cells

down.

It also looks like Ariad phase 2 trial are to start by the end of the year.

Matt........thanks for the info about BP to watch for.

Waiting to hear from Dr. Druker about getting started on Tasigna.

C.

[Guest guest]

Lottie and all,

Dasitinib was hard on me I had so much Pleural effusion they had to tap me,

three different times

they got 8.5 500ml bottles off my right lung.   This was the end of Dasitinib

for me, I went back

to Nilotinib and now off all meds for the last three months.between those two

drugs and Exjade

I almost met my maker.. much better now, but now what? will see my hem doc

around the 26th

of this month. If it were not so much driving involved this may become fun to

see what rascal thingy they

come up with next..lol

SkipD dx'ed long time ago when the earth was being born. in fact before the dead

sea was even sick.....

________________________________

From: Lottie Duthu <lotajam@...>

CML < >

Sent: Thu, March 11, 2010 3:32:51 AM

Subject: [ ] Sprycel not for everyone

 

We (Dr. D and I) are throwing in the towel for me with Sprycel. I have had 3

nuisance episodes of pleural effusion since Sept. even with lowering the dose,

etc. So the plan is to start Tasigna once this episode resolves.... ....

____________ _____

Dear ,

Sorry you and Sprycel have come to a parting of the ways. I liked it when I was

on it, but I also suffered from pleural and pericardial effusions. Now on SKI, I

am again experiencing pleural effusions. I guess you can honestly say it is not

for everyone. Thank goodness we have options. I still have the same clock I used

to set at 3:00 A.M. and P. M. every day to take my little yellow pill. I still

remember when I stood in the middle of the room and everyone watched me take my

first pill. That part I didn't like, but it's something you can live with.

Everyone isn't as lucky as that snow bird from Canada who comes to WPB ever year

and soaks up our sunshine. I want to tell him that all excess sunshine from now

on will be used for our renewable energy.

I saw my new oncologist again today and he said if ever I get off SKI, he would

stronly suggest my switching to Tasigna as it will soon override Gleevec in the

drug of choice.

I don't think I would be able to afford it, so I might ask to be in the same

trial (Ariad) as Bobby, Len, Becky and Jackie S. Well at this time, I am not

projecting into the future, I have to live one day at a time. I still have to

get this visit with the nephrologist over with and see what the next step will

be. Is it the SKI? Is it something else in my body that has been brewing? Just

have to wait it out.

Wish you luck, dear heart,

Lottie

[Guest guest]

>

> Lottie and all,

>

> Dasitinib was hard on me I had so much Pleural effusion they had to tap me,

three different times

> they got 8.5 500ml bottles off my right lung.   This was the end of

Dasitinib for me, I went back

> to Nilotinib and now off all meds for the last three months.between those two

drugs and Exjade

> I almost met my maker.. much better now, but now what? will see my hem doc

around the 26th

> of this month. If it were not so much driving involved this may become fun to

see what rascal thingy they

> come up with next..lol

> SkipD dx'ed long time ago when the earth was being born. in fact before the

dead sea was even sick.....

______________________________

Hi Skip,

Jerry Mayfield just posted on his cml site that Phase 2 trials for Ariad will

open soon at various trial centers....maybe by July. Maybe this will be an

option for you to consider.

C.