Re: Sprycel Side Effects

[Guest guest]

Bobby,

You got that right..It's always something..I am going to try the buds daily

and see what happens..I don't do dairy at all..I may add them to some oatmeal or

something or eat them plain..I do get my Benefiber at costco..Huge savings and

on Social security one needs all the deals they can get..lol..So I will see what

happens now..

Thanks

SharonS

- In , ROBERTA DOYLE <rcd1929@...> wrote:

>

> As far as the buds go, you can mix them with another cereal, and take them

with Silk, which is made of soy, right? I don't because I don't want to take the

milk, and can't even think of eating soyl..  But you must take them faithfully,

every day, to get 26 grams of fiber, and also drink lots of water.  By the way,

if you buy Miralax at Sam's club, you can buy two large ones for the price of

less than one at Walgreen's, just in case you didn't know, I think I paid under

10 for two large.  Always something, right?  Bobby

>

> a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

> 09/08/09 - PCR 0.017

> 02/13/09 - XL trial ended due to side effects

> 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

[Guest guest]

Tracey:

Sorry I have been busy the last few days, so I have not had time to answer.

No, the change in medication was predicated on the difficulty I had trying

to get back on Tasigna at 800 mg. Because of the faulty test, the Dr.

wanted me back quickly at 800 mg, instead of slowly upping the dose.

Each time I have done this, it has been rather.....unpleasant. even when

I dropped down to 400 mg and then ramped up to 600 mg, it was again,

unpleasant.So the switch was more about my failure to be able to tolerate

dosage, instead of the test results.

I will say that my Doctor (who works with Cortez and others on various

research) has seen at least one patient fail on Tasigna that had concerned

him and he wanted to make sure I was not the second. The other one

was recent.

Once the failure in the lab test was noted as a 3 long increase over a 32

day

span. That was originally what concerned him, not getting off PCRU, which

was not a concern for him.

As always, thank you for asking very good questions and watching out for

all of us and our care. Now, if you would only shave those darn legs!

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November of 2007

Sprycel September of 2009

In a message dated 9/17/2009 9:12:54 P.M. Eastern Daylight Time,

traceyincanada@... writes:

Matt, please tell me there's more to the story than just losing your PCRU

status and please tell me that a clinical decision wasn't based on one

single blood test, more importantly, a test that wasn't even done in your

regular lab.

You know that most of the experts don't believe PCRU should be a goal of

treatment right? A good stable response is what is hoped for by the top

experts.

I've gone in and out of PCRU more times than I can count. What matters is

that I remain stable within a one log range, not if a test is negative or

positive.

In fact, to be honest, whenever I get a PCRU result I wonder if they

screwed something up. We all know that these drugs don't cure us and we know

that we'll always have cancer cells lingering around therefore, it's not

comforting to me to see a test that doesn't show any cells, it makes me think

they didn't use enough blood or run the sample long enough.

I've just seen too many examples of tests that bounced around to be

concerned. Unless there's a dramatic increase and by dramatic I mean OVER a log

increase in two or even three consecutive tests, I personally wouldn't make

any therapeutic changes.

Tracey

--- In _@..._ (mailto: ) , mtmaynor@...

wrote:

>

> To make a very long story short, I have lost my PCRU while

> on Tasigna, and I am moving to Sprycel on Saturday of this

> week. Can anyone give me some ideas of what to expect

> and anything that has relieved the side effects and adjustment

> period that you seem to always have to go through.

>

> Matt

> Florida

>

>

>

> [Non-text portions of this message have been removed]

>

Number 1078 in the Esteemed Zavie Zero Club

[Guest guest]

Zavie:

Thank you for your note. My doctor did give me a list of

side effects to expect and things to watch, however I am

not always that trusting of doctors, in fact I would prefer

to get information from patients.

In fact, my Oncologist likes me to bring in comments from

other sources as he always wants information on what other

patients are experiencing and what he can do to improve the

quality of life.

I was just reaching out for some reassurance.

I would also say that the reason for the switch also had to do

with some side effects on Tasigna, including high blood pressure

(which has never been one of my issues), fatigue and radial para-

tenial pain.

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November 2007

Sprycel September 2009

In a message dated 9/18/2009 12:29:41 A.M. Eastern Daylight Time,

zmiller@... writes:

Hi Matt,

I would love to hear the long story.

It doesn't make sense to switch drugs because you lost your PCRU. PCRU is

not a goal of the top CML specialists. In fact, Dr. Druker says that all

one

needs is to be at CCR over a long period of time.

Also, it takes 3 consecutive PCRs to determine a trend. Could you post your

last couple of PCR results so we can see why your doctor switched

medications.

I find it bizarre is you asking this list about Sprycel and what to expect

when you go on the drug. This is your doctor's responsibility to tell you

what to expect.

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: _zmiller@..._ (mailto:zmiller@...)

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: _@..._ (mailto: )

[mailto:_@..._ (mailto: ) ] On Behalf Of

_mtmaynor@..._ (mailto:mtmaynor@...)

Sent: September 17, 2009 8:09 PM

_@..._ (mailto: )

Subject: [ ] Sprycel Side Effects

To make a very long story short, I have lost my PCRU while

on Tasigna, and I am moving to Sprycel on Saturday of this

week. Can anyone give me some ideas of what to expect

and anything that has relieved the side effects and adjustment

period that you seem to always have to go through.

Matt

Florida

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

Tasigna November of 2007

Number 1078 in the Esteemed Zavie Zero Club

[Guest guest]

Hi Matt,

I have been on Sprycel for 2.5 years. Started out on 140 mg. Side effects were

in the beginning: severe headaches, lasted a couple months (maybe the severity

of the side effects were due to all the cml cells it had to beat out,  My counts

were in the millions) Nausea had to take somthing for it. joint and long bone

pain. and of course the BIG D had to take somthing for it too, numbness in the

toes. Skin sensitive to the sunalso. Today, I take 90 mg and side effects are

low no headaches some big D only in the am and yes have joint pain. But am so

Happy to be here.

Good luck,

Anita

 

________________________________

From: " mtmaynor@... " <mtmaynor@...>

Sent: Saturday, September 19, 2009 11:22:03 AM

Subject: Re: [ ] Sprycel Side Effects

 

Zavie:

Thank you for your note. My doctor did give me a list of

side effects to expect and things to watch, however I am

not always that trusting of doctors, in fact I would prefer

to get information from patients.

In fact, my Oncologist likes me to bring in comments from

other sources as he always wants information on what other

patients are experiencing and what he can do to improve the

quality of life.

I was just reaching out for some reassurance.

I would also say that the reason for the switch also had to do

with some side effects on Tasigna, including high blood pressure

(which has never been one of my issues), fatigue and radial para-

tenial pain.

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November 2007

Sprycel September 2009

In a message dated 9/18/2009 12:29:41 A.M. Eastern Daylight Time,

zmillersympatico (DOT) ca writes:

Hi Matt,

I would love to hear the long story.

It doesn't make sense to switch drugs because you lost your PCRU. PCRU is

not a goal of the top CML specialists. In fact, Dr. Druker says that all

one

needs is to be at CCR over a long period of time.

Also, it takes 3 consecutive PCRs to determine a trend. Could you post your

last couple of PCR results so we can see why your doctor switched

medications.

I find it bizarre is you asking this list about Sprycel and what to expect

when you go on the drug. This is your doctor's responsibility to tell you

what to expect.

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: _zmillersympatico (DOT) zm_ (mailto:zmillersympatico (DOT) ca)

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: _groups (DOT) CML_ (mailto:groups (DOT) com)

[mailto:_groups (DOT) CML_ (mailto:groups (DOT) com) ] On Behalf Of

_mtmaynoraol (DOT) mtm_ (mailto:mtmaynoraol (DOT) com)

Sent: September 17, 2009 8:09 PM

_groups (DOT) CML_ (mailto:groups (DOT) com)

Subject: [ ] Sprycel Side Effects

To make a very long story short, I have lost my PCRU while

on Tasigna, and I am moving to Sprycel on Saturday of this

week. Can anyone give me some ideas of what to expect

and anything that has relieved the side effects and adjustment

period that you seem to always have to go through.

Matt

Florida

[Guest guest]

Hi Matt,

Regards,

Rodorbal Labradors Australia

www.rodorbal.com

http://au./group/Ozlabradors/

www.labradata.org

From: [mailto: ] On Behalf Of

mtmaynor@...

Sent: Sunday, 20 September 2009 2:22 AM

Subject: Re: [ ] Sprycel Side Effects

Zavie:

Thank you for your note. My doctor did give me a list of

side effects to expect and things to watch, however I am

not always that trusting of doctors, in fact I would prefer

to get information from patients.

In fact, my Oncologist likes me to bring in comments from

other sources as he always wants information on what other

patients are experiencing and what he can do to improve the

quality of life.

I was just reaching out for some reassurance.

I would also say that the reason for the switch also had to do

with some side effects on Tasigna, including high blood pressure

(which has never been one of my issues), fatigue and radial para-

tenial pain.

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November 2007

Sprycel September 2009

In a message dated 9/18/2009 12:29:41 A.M. Eastern Daylight Time,

zmiller@... <mailto:zmiller%40sympatico.ca> writes:

Hi Matt,

I would love to hear the long story.

It doesn't make sense to switch drugs because you lost your PCRU. PCRU is

not a goal of the top CML specialists. In fact, Dr. Druker says that all

one

needs is to be at CCR over a long period of time.

Also, it takes 3 consecutive PCRs to determine a trend. Could you post your

last couple of PCR results so we can see why your doctor switched

medications.

I find it bizarre is you asking this list about Sprycel and what to expect

when you go on the drug. This is your doctor's responsibility to tell you

what to expect.

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: _zmiller@... <mailto:_zmiller%40sympatico.zm> _

(mailto:zmiller@... <mailto:zmiller%40sympatico.ca> )

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: _@... <mailto:_%40groups.CML> _

(mailto: <mailto:%40> )

[mailto:_@... <mailto:_%40groups.CML> _

(mailto: <mailto:%40> ) ] On Behalf

Of

_mtmaynor@... <mailto:_mtmaynor%40aol.mtm> _ (mailto:mtmaynor@...

<mailto:mtmaynor%40aol.com> )

Sent: September 17, 2009 8:09 PM

_@... <mailto:_%40groups.CML> _

(mailto: <mailto:%40> )

Subject: [ ] Sprycel Side Effects

To make a very long story short, I have lost my PCRU while

on Tasigna, and I am moving to Sprycel on Saturday of this

week. Can anyone give me some ideas of what to expect

and anything that has relieved the side effects and adjustment

period that you seem to always have to go through.

Matt

Florida

[Guest guest]

Hi Matt,

I'm sorry to see you have experienced these problems with Tasigna, as you

seemed to do so well on it. Can you tell me what the radial paratenial pain

is? You are the first one I have heard to have to go from Tasigna to Sprycel

(in Australia we can't do that - back to Glivec otherwise ugg).

Regards,

From: [mailto: ] On Behalf Of

mtmaynor@...

Sent: Sunday, 20 September 2009 2:22 AM

Subject: Re: [ ] Sprycel Side Effects

Zavie:

Thank you for your note. My doctor did give me a list of

side effects to expect and things to watch, however I am

not always that trusting of doctors, in fact I would prefer

to get information from patients.

In fact, my Oncologist likes me to bring in comments from

other sources as he always wants information on what other

patients are experiencing and what he can do to improve the

quality of life.

I was just reaching out for some reassurance.

I would also say that the reason for the switch also had to do

with some side effects on Tasigna, including high blood pressure

(which has never been one of my issues), fatigue and radial para-

tenial pain.

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November 2007

Sprycel September 2009

In a message dated 9/18/2009 12:29:41 A.M. Eastern Daylight Time,

zmiller@... <mailto:zmiller%40sympatico.ca> writes:

Hi Matt,

I would love to hear the long story.

It doesn't make sense to switch drugs because you lost your PCRU. PCRU is

not a goal of the top CML specialists. In fact, Dr. Druker says that all

one

needs is to be at CCR over a long period of time.

Also, it takes 3 consecutive PCRs to determine a trend. Could you post your

last couple of PCR results so we can see why your doctor switched

medications.

I find it bizarre is you asking this list about Sprycel and what to expect

when you go on the drug. This is your doctor's responsibility to tell you

what to expect.

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: _zmiller@... <mailto:_zmiller%40sympatico.zm> _

(mailto:zmiller@... <mailto:zmiller%40sympatico.ca> )

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: _@... <mailto:_%40groups.CML> _

(mailto: <mailto:%40> )

[mailto:_@... <mailto:_%40groups.CML> _

(mailto: <mailto:%40> ) ] On Behalf

Of

_mtmaynor@... <mailto:_mtmaynor%40aol.mtm> _ (mailto:mtmaynor@...

<mailto:mtmaynor%40aol.com> )

Sent: September 17, 2009 8:09 PM

_@... <mailto:_%40groups.CML> _

(mailto: <mailto:%40> )

Subject: [ ] Sprycel Side Effects

To make a very long story short, I have lost my PCRU while

on Tasigna, and I am moving to Sprycel on Saturday of this

week. Can anyone give me some ideas of what to expect

and anything that has relieved the side effects and adjustment

period that you seem to always have to go through.

Matt

Florida

[Guest guest]

Hi Matt,

I'm glad to hear there is more to the story to your drug switch but sorry at the

same time. Quality of life is important and if it means switching drugs to

achieve a better lifestyle than so be it.

If ever I make it down south, I'll be sure to shave my legs but the moose and

caribou here don't seem to mind the hairy legs.

Tracey

> >

> > To make a very long story short, I have lost my PCRU while

> > on Tasigna, and I am moving to Sprycel on Saturday of this

> > week. Can anyone give me some ideas of what to expect

> > and anything that has relieved the side effects and adjustment

> > period that you seem to always have to go through.

> >

> > Matt

> > Florida

> >

> >

> >

> > [Non-text portions of this message have been removed]

> >

>

>

>

>

> Number 1078 in the Esteemed Zavie Zero Club

>

>

>

>

>

>

>

[Guest guest]

:

Peritoneal pain, is what the ER doctor called it, so I am not sure of the

appropriate term. However, for me it was a non-specific back pain

(mid-back) that seemed to radiate from my internal organs. Since my lipase

enzymes

were elevated, he deduced that the pain was most like from the pancreas.

However, he did not dwell on it very much as he knew the best thing was to

start saline to flush Tasigna out of my system

Hope this is helpful and not more confusing.

..

With warm regards,

Matt Maynor

8132 Hollyridge Road

ville, FL 32256

904-219-9108 Phone

904-998-8571 Fax

This message (including any attachments) contains confidential information

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If you are not the intended recipient, you should delete this message, and

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prohibited.

In a message dated 9/19/2009 10:25:04 P.M. Eastern Daylight Time,

rodorbal@... writes:

Hi Matt,

I'm sorry to see you have experienced these problems with Tasigna, as you

seemed to do so well on it. Can you tell me what the radial paratenial pain

is? You are the first one I have heard to have to go from Tasigna to

Sprycel

(in Australia we can't do that - back to Glivec otherwise ugg).

Regards,

From: _@..._ (mailto: )

[mailto:_@..._ (mailto: ) ] On Behalf Of

_mtmaynor@..._ (mailto:mtmaynor@...)

Sent: Sunday, 20 September 2009 2:22 AM

_@..._ (mailto: )

Subject: Re: [ ] Sprycel Side Effects

Zavie:

Thank you for your note. My doctor did give me a list of

side effects to expect and things to watch, however I am

not always that trusting of doctors, in fact I would prefer

to get information from patients.

In fact, my Oncologist likes me to bring in comments from

other sources as he always wants information on what other

patients are experiencing and what he can do to improve the

quality of life.

I was just reaching out for some reassurance.

I would also say that the reason for the switch also had to do

with some side effects on Tasigna, including high blood pressure

(which has never been one of my issues), fatigue and radial para-

tenial pain.

With the warmest regards,

Matt

CML of Florida

Dx January of 2005

Gleevec March of 2005

Tasigna November 2007

Sprycel September 2009

In a message dated 9/18/2009 12:29:41 A.M. Eastern Daylight Time,

_zmiller@..._ (mailto:zmiller@...)

<mailto:zmiller%mailto:zmillma> writes:

Hi Matt,

I would love to hear the long story.

It doesn't make sense to switch drugs because you lost your PCRU. PCRU is

not a goal of the top CML specialists. In fact, Dr. Druker says that all

one

needs is to be at CCR over a long period of time.

Also, it takes 3 consecutive PCRs to determine a trend. Could you post your

last couple of PCR results so we can see why your doctor switched

medications.

I find it bizarre is you asking this list about Sprycel and what to expect

when you go on the drug. This is your doctor's responsibility to tell you

what to expect.

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: __zmillersympatico (DOT) _z_ (mailto:_zmiller@...)

<mailto:_zmiller%mailto:_zmilma> _

(mailto:_zmiller@..._ (mailto:zmiller@...)

<mailto:zmiller%mailto:zmillma> )

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: __groups (DOT) _CM_ (mailto:_@...)

<mailto:_%mailto:_%mai> _

(mailto:_@..._ (mailto: )

<mailto:%mailto:%<Wmai> )

[mailto:__groups (DOT) _CM_ (mailto:_@...)

<mailto:_%mailto:_%mai> _

(mailto:_@..._ (mailto: )

<mailto:%mailto:%<Wmai> ) ] On Behalf

Of

__mtmaynoraol (DOT) _mt_ (mailto:_mtmaynor@...)

<mailto:_mtmaynor%mailto:_m> _ (mailto:_mtmaynor@..._

(mailto:mtmaynor@...)

<mailto:mtmaynor%mailto:mt> )

Sent: September 17, 2009 8:09 PM

__groups (DOT) _CM_ (mailto:_@...)

<mailto:_%mailto:_%mai> _

(mailto:_@..._ (mailto: )

<mailto:%mailto:%<Wmai> )

Subject: [ ] Sprycel Side Effects

To make a very long story short, I have lost my PCRU while

on Tasigna, and I am moving to Sprycel on Saturday of this

week. Can anyone give me some ideas of what to expect

and anything that has relieved the side effects and adjustment

period that you seem to always have to go through.

Matt

Florida

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

Tasigna November of 2007

Number 1078 in the Esteemed Zavie Zero Club

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]