Re: Barb as the Tasigna Poster Child-

[Guest guest]

Hello ,

Do you live in the Tampa Bay area? You mentioned Moffitt.

I live in Tampa. And have been to Moffitt but not in the past year or so.

Do you have another primary Oncologist outside of Moffitt?

Who is your Dr at Moffitt?

ez

Dx 5-2000

[Guest guest]

Hi Barb,Rick, and Matt,

My name is Lynn. I am going to be starting Tasigna soon. I've been

on Gleevec since 12/03 and it's really worn me down. Lots of side

effects.. and I'm just DONE!

I just had my baseline EKG done the other day. Can you tell me what

other tests you had to regularly have done, initially, when starting

the drug? Also, did you take a Gleevec break first, to get it out of

your system before starting?

Looking forward to better tomorrows..

Lynn

> :

>

> I too go to Moffit and I too will be there on Thursday of this week

> for my annual BMB. I have not been thrilled with their labs, but

> overall I am thrilled with my oncologist and the amount of time

> he spends with me and the information he gives and receives.

> He is always eager to share the latest information and to listen

> to what I have to say.

>

> I too started Tasigna last November and after the initial adjustment

> think it is better for me than Gleevec was for the three years I was

> on it.

>

> I hope it goes well for you.

>

> Matt

> ville, FL

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

> (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?

ncid=aolhom00030000000001)

>

>

[Guest guest]

Lynn

I took a break from Gleevec for 1 month. Then started Tasigna at 800

mg. I had an EKG 7 days before beginning and 7 days after. Then I had

the EKG every two weeks, twice. They were all normal so he cancelled

it. They look for QTC prolongation or in laymans terms; irregular heart

beat.

I also had a CBC and CMP every two weeks the first 8 weeks and now have

been scheduled every 8 weeks through August. I also was dropped from

800 mg to 400 mg after the initial 2 weeks because of severe side

effects. I had incredible joint pain and an entire body rash the first

few weeks. If you email me privately I would send you ( or anyone) all

the Novartis documents with side effects and the protocol for it from

Novartis as well as my own jounal .

I was advised by people on trials before me, to 'storm it out' because

after two weeks, it all settles down. I would concur.

Be well,

Barb

> > :

> >

> > I too go to Moffit and I too will be there on Thursday of this week

> > for my annual BMB. I have not been thrilled with their labs, but

> > overall I am thrilled with my oncologist and the amount of time

> > he spends with me and the information he gives and receives.

> > He is always eager to share the latest information and to listen

> > to what I have to say.

> >

> > I too started Tasigna last November and after the initial adjustment

> > think it is better for me than Gleevec was for the three years I was

> > on it.

> >

> > I hope it goes well for you.

> >

> > Matt

> > ville, FL

> >

> > **************Create a Home Theater Like the Pros. Watch the video

> on AOL

> > Home.

> > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?

> ncid=aolhom00030000000001)

> >

> >

[Guest guest]

Barb

What is CMP?

Sharon

_____

From: [mailto: ] On Behalf Of Barb

Stanley

Sent: Wednesday, March 19, 2008 8:08 PM

Subject: Re: [ ] Barb as the Tasigna Poster Child-

Lynn

I took a break from Gleevec for 1 month. Then started Tasigna at 800

mg. I had an EKG 7 days before beginning and 7 days after. Then I had

the EKG every two weeks, twice. They were all normal so he cancelled

it. They look for QTC prolongation or in laymans terms; irregular heart

beat.

I also had a CBC and CMP every two weeks the first 8 weeks and now have

been scheduled every 8 weeks through August. I also was dropped from

800 mg to 400 mg after the initial 2 weeks because of severe side

effects. I had incredible joint pain and an entire body rash the first

few weeks. If you email me privately I would send you ( or anyone) all

the Novartis documents with side effects and the protocol for it from

Novartis as well as my own jounal .

I was advised by people on trials before me, to 'storm it out' because

after two weeks, it all settles down. I would concur.

Be well,

Barb

> > :

> >

> > I too go to Moffit and I too will be there on Thursday of this week

> > for my annual BMB. I have not been thrilled with their labs, but

> > overall I am thrilled with my oncologist and the amount of time

> > he spends with me and the information he gives and receives.

> > He is always eager to share the latest information and to listen

> > to what I have to say.

> >

> > I too started Tasigna last November and after the initial adjustment

> > think it is better for me than Gleevec was for the three years I was

> > on it.

> >

> > I hope it goes well for you.

> >

> > Matt

> > ville, FL

> >

> > **************Create a Home Theater Like the Pros. Watch the video

> on AOL

> > Home.

> > (http://home.

<http://home.aol.com/diy/home-improvement-eric-stromer?video=15?>

aol.com/diy/home-improvement-eric-stromer?video=15?

> ncid=aolhom00030000000001)

> >

> >

[Guest guest]

Lynn:

I am sitting in the waiting room of Moffitt CC this morning for a BMB but I will

try to answer. It is important to have the EKG done weekly as you want to

monitor your heart for QT Prolongation or an irregular heartbeat. If you are

having back pain, dizziness or other pain, they may suggest blood tests monitor

you Lipaze and Electrolytes. If either of these get too " out of whack " they to

can cause QT Prolongation. It is not normal to routinely do the extra blood

tests, but if you are having pain, particularly mid back pain, I would suggest

you encourage your oncologist to run them. There are other tests that your

oncologist will suggest, but most of them will relate to tests for QT

Prolongation.

Also of you are having trouble adapting to Tasigna, I would encourage you

request starting at 400mg per day (200 twice per day) instead of the standard

800 mg. In fact my CML expert is beginning testing on the efficacy of lower

doses of Tasigna with patients who have reached PCRU.

Speaking of PCRU, I was at 6.92% on Gleevec and was able to reach PCRU on

Tasigna after only 3 months, so it does work.

Good luck and email me directly if you have specific questions.

With warm regards,

Matt Maynor

8132 Hollyridge Road

ville, FL 32256

mtmaynor@...

904-219-9108

Re: [ ] Barb as the Tasigna Poster Child-

Hi Barb,Rick, and Matt,

My name is Lynn. I am going to be starting Tasigna soon. I've been

on Gleevec since 12/03 and it's really worn me down. Lots of side

effects.. and I'm just DONE!

I just had my baseline EKG done the other day. Can you tell me what

other tests you had to regularly have done, initially, when starting

the drug? Also, did you take a Gleevec break first, to get it out of

your system before starting?

Looking forward to better tomorrows..

Lynn

> :

>

> I too go to Moffit and I too will be there on Thursday of this week

> for my annual BMB. I have not been thrilled with their labs, but

> overall I am thrilled with my oncologist and the amount of time

> he spends with me and the information he gives and receives.

> He is always eager to share the latest information and to listen

> to what I have to say.

>

> I too started Tasigna last November and after the init

[The entire original message is not included]=

[Guest guest]

Hi Matt!

Thank you so much for getting back to me on this. I will be my dr's

first patient to try Tasigna, so there's alot for him to learn!

I'm curious too, as to dose, as I'm on 300 mg Gleevec currently, and

still having side effects, although I remain PCRU. Will definately

need to discuss.

So glad to hear you are doing better!

Take good care! Lynn

> > :

> >

> > I too go to Moffit and I too will be there on Thursday of this

week

> > for my annual BMB. I have not been thrilled with their labs, but

> > overall I am thrilled with my oncologist and the amount of time

> > he spends with me and the information he gives and receives.

> > He is always eager to share the latest information and to listen

> > to what I have to say.

> >

> > I too started Tasigna last November and after the init

>

> [The entire original message is not included]=

>

>

>

[Guest guest]

Hi Matt,

I was at Moffitt today from 8:30 till 12:30. Dr Panillia was waiting for my

HGB to reach normal levels before starting me on another drug. I got a

prescription for Tsagnia and I am now dealing with my drug plan to see what they

can arrange. They are going to call me and discuss my co-pay. That should be

interesting. The max I have to spend on medical stuff is $5,500.00 every year

and after that amount I believe everything is free. I also had a baseline EKG

done today and will need to have another one 10 days after I am on the new drug.

Who do you see at Moffitt?

I also gave an extra 6 viles of blood for their research. Dr Panillia is

working on a CURE for the CML. How nice is that?

Thanks for you concern.

Matt Maynor <mtmaynor@...> wrote:

Lynn:

I am sitting in the waiting room of Moffitt CC this morning for a BMB but I will

try to answer. It is important to have the EKG done weekly as you want to

monitor your heart for QT Prolongation or an irregular heartbeat. If you are

having back pain, dizziness or other pain, they may suggest blood tests monitor

you Lipaze and Electrolytes. If either of these get too " out of whack " they to

can cause QT Prolongation. It is not normal to routinely do the extra blood

tests, but if you are having pain, particularly mid back pain, I would suggest

you encourage your oncologist to run them. There are other tests that your

oncologist will suggest, but most of them will relate to tests for QT

Prolongation.

Also of you are having trouble adapting to Tasigna, I would encourage you

request starting at 400mg per day (200 twice per day) instead of the standard

800 mg. In fact my CML expert is beginning testing on the efficacy of lower

doses of Tasigna with patients who have reached PCRU.

Speaking of PCRU, I was at 6.92% on Gleevec and was able to reach PCRU on

Tasigna after only 3 months, so it does work.

Good luck and email me directly if you have specific questions.

With warm regards,

Matt Maynor

8132 Hollyridge Road

ville, FL 32256

mtmaynor@...

904-219-9108

Re: [ ] Barb as the Tasigna Poster Child-

Hi Barb,Rick, and Matt,

My name is Lynn. I am going to be starting Tasigna soon. I've been

on Gleevec since 12/03 and it's really worn me down. Lots of side

effects.. and I'm just DONE!

I just had my baseline EKG done the other day. Can you tell me what

other tests you had to regularly have done, initially, when starting

the drug? Also, did you take a Gleevec break first, to get it out of

your system before starting?

Looking forward to better tomorrows..

Lynn

> :

>

> I too go to Moffit and I too will be there on Thursday of this week

> for my annual BMB. I have not been thrilled with their labs, but

> overall I am thrilled with my oncologist and the amount of time

> he spends with me and the information he gives and receives.

> He is always eager to share the latest information and to listen

> to what I have to say.

>

> I too started Tasigna last November and after the init

[The entire original message is not included]=

[Guest guest]

I was there till about 11:30 but on the second floor for BMB. I also see Dr

Pinea.

With warm regards,

Matt Maynor

8132 Hollyridge Road

ville, FL 32256

mtmaynor@...

904-219-9108

RE: [ ] Barb as the Tasigna Poster Child-

Hi Matt,

I was at Moffitt today from 8:30 till 12:30. Dr Panillia was waiting for my HGB

to reach normal levels before starting me on another drug. I got a prescription

for Tsagnia and I am now dealing with my drug plan to see what they can arrange.

They are going to call me and discuss my co-pay. That should be interesting. The

max I have to spend on medical stuff is $5,500.00 every year and after that

amount I believe everything is free. I also had a baseline EKG done today and

will need to have another one 10 days after I am on the new drug.

Who do you see at Moffitt?

I also gave an extra 6 viles of blood for their research. Dr Panillia is

working on a CURE for the CML. How nice is that?

Thanks for you concern.

Matt Maynor <mtmaynor@...> wrote:

Lynn:

I am sitting in the waiting room of Moffitt CC this morning for a BMB but I

will try to answer. It is important to have the EKG done weekly as you want to

monitor your heart for QT Prolongation or an irregular heartbeat. If you are

having back pain, dizziness or other pain, they may suggest blood tests monitor

you Lipaze and Electrolytes. If either of these get too " out of whack " they to

can cause QT Prolongation. It is not normal to routinely do the extra blood

tests, but if you are having pain, particularly mid back pain, I would suggest

you encourage your oncologist to run them. There are other tests that your

oncologist will suggest, bu

[The entire original message is not included]=

[Guest guest]

Hi ,

I live in Naples and my Moffitt Dr. is Dr Pinilla. My local Onc is Dr.

Grossman who has only 1 CML patient, me. I am very pleased to have been

sent to Moffitt. I feel that Dr Panilla is an expert in CML who is also doing

research for a CURE for this disease. I now donate extra blood whenever I go to

Moffitt for his research.

ez <lmartinez@...> wrote:

Hello ,

Do you live in the Tampa Bay area? You mentioned Moffitt.

I live in Tampa. And have been to Moffitt but not in the past year or so.

Do you have another primary Oncologist outside of Moffitt?

Who is your Dr at Moffitt?

ez

Dx 5-2000