Re: Another Ariad patient-Bobby

[Guest guest]

Hi Bobby,

Are you still having follow up appts every month? I noticed that we don't have

to have research testing done every month now & was hoping they will stretch our

appts out to every two months.  Wouldn't that be nice? I'm still doing good

with little or no side effects. I've been having headaches more often in the

evenings, but it's after a days work and I'm pretty tired. 

Hope your doing good too.

Jackie S.

From: Hans <hanslmicrosoft (DOT) com>

Subject: [ ] Another Ariad patient

groups (DOT) com

Date: Tuesday, December 1, 2009, 6:59 PM

 

I just started Cycle 2, Day 1, so I'm basically through my first month. I am

being treated at OHSU, and I can't say enough positive about the staff and OHSU,

they have been great.

Besides some mild side effects similar to what I had on Gleevec and Sprycel, I

have to say that I'm feeling pretty good. The side effects were mostly in the

first 2 weeks, and been 'normal' now for a couple of weeks.

My platelets are approaching 50k (down from 117k when I started the trial), but

they were 44k on Sprycel so dr.doesn't seem too worried. They went from 56k last

week to 52k this week, so they are probably bottoming out...

My dr. is scheduling a PCR in a couple of week, it wasn't on the initial

schedule, but I'm wondering if he would like to see what is happeing in my

marrow, since I am on the current max dosage of 60 mg. A couple of other posters

in this group are on 15 and 30, and doing quite well.

I'll provide more updated once I have them. Also, a great big thanks to Beth and

Bobby who have been great resources as I entered this unchartered territory and

have been great support !

Hans

dx Dec 08 20/20, 198/200

Gleevec Dec 08 - Jun 09 20/20, 150/200

Sprycel Jun 09 - Oct 09 17/20, 112/200

T315 Mutation detected and decision to discontinue Sprycel

[Guest guest]

HI JACKIE, I GO EVERY WEEK TO THE CLEVELAND CLINIC FOR LABS AND EVERY 4 WEEKS TO

ANN ARBOR FOR LABS AND A VISIT WITH DR. TALPAZ.  EVERY 3 MONTHS I GET A BMA/BMB

AND ECHOCARDIOGRAM, LABS AND A CHECK UP.  I THINK I HAVE TO GET LABS EVERY WEEK

DUE TO BEING ANEMIC.  I DON'T HAVE HEADACHES, BUT DO HAVE ACID REFLUX,  AND AM

GETTING TIRED OF SLEEPING SITTING UP!!!  BUT IF THAT'S ALL I HAVE TO COMPLAIN

ABOUT, I'M DOING GREAT!

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

o2/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

#840 Zavie's Zero Club

From: Hans <hanslmicrosoft (DOT) com>

Subject: [ ] Another Ariad patient

groups (DOT) com

Date: Tuesday, December 1, 2009, 6:59 PM

 

I just started Cycle 2, Day 1, so I'm basically through my first month. I am

being treated at OHSU, and I can't say enough positive about the staff and OHSU,

they have been great.

Besides some mild side effects similar to what I had on Gleevec and Sprycel, I

have to say that I'm feeling pretty good. The side effects were mostly in the

first 2 weeks, and been 'normal' now for a couple of weeks.

My platelets are approaching 50k (down from 117k when I started the trial), but

they were 44k on Sprycel so dr.doesn't seem too worried. They went from 56k last

week to 52k this week, so they are probably bottoming out...

My dr. is scheduling a PCR in a couple of week, it wasn't on the initial

schedule, but I'm wondering if he would like to see what is happeing in my

marrow, since I am on the current max dosage of 60 mg. A couple of other posters

in this group are on 15 and 30, and doing quite well.

I'll provide more updated once I have them. Also, a great big thanks to Beth and

Bobby who have been great resources as I entered this unchartered territory and

have been great support !

Hans

dx Dec 08 20/20, 198/200

Gleevec Dec 08 - Jun 09 20/20, 150/200

Sprycel Jun 09 - Oct 09 17/20, 112/200

T315 Mutation detected and decision to discontinue Sprycel