Re: Novartis Advisory Board- Tasigna/Gleevec

[Guest guest]

I would like an easy to read " What your doctor should be telling you. " Or

" You have CML... How to know if your doctor really knows what they are

talking about. "

I guess I'm saying... as a patient you are dumped into a world of complete

unknown... trusting that the onocologist that your primary doctor sent you

to is full of knowledge and complete understanding. It would have been nice

to know that there are different specialties in onocology.

Also, include the terms and definitions of CML.

And a sample CBC lab results with more detailed info.

This is what popped into my head when reading your inquiry. It seems like...

you find out you have CML and within hours you are thrust into a world of

medicines and " saving your life " . Knowing that you have a good doctor would

have been cool.

Tammy

_____

From: [mailto: ] On Behalf Of Barb

Stanley

Sent: Tuesday, March 17, 2009 10:57 PM

Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

Hello dear CML survivors

I was called last Friday for a 45 minute interview from Novartis for the

Patient Advisory board April 24,25,26 in Houston. Evidently the interview

went well. They notified me today I was chosen. Since it is now real, I

would love as many questions and suggestions that you may have on what kind

of education you would have liked, on gleevec or on tasigna before or when

you began. I want to represent you as well as I can and plan a report back

to you when I return. So far, I have 2 pages of questions.

I also found out my name was submitted from my oncologist for this. I

wondered how that happened. The info I recieved today indicates that

Novartis wants to know what kind of patient education would be helpful.

I have said from the beginning, it makes no sense for me to have cancer

unless it brings enlightenmemt, knowledge and power to people. Please feel

free to email me privately, to let me know what I should bring with me to

represent you best. I plan a report to all when I return.

Blessings my good survivors,

Barb

[Guest guest]

I agree with Tammy- I was given a basic Gleevec pamphlet but I think it could

have been more helpful with- testing, what to ask your doctor and what your

doctor should be saying etc. I think they should even tell us about groups

like ours- I found it by accident.

Thank you for carrying the messages.

Chi

> From: Tammy Ferns <tammy@...>

> Subject: RE: [ ] Novartis Advisory Board- Tasigna/Gleevec

>

> Date: Tuesday, March 17, 2009, 9:06 PM

> I would like an easy to read " What your doctor should

> be telling you. " Or

> " You have CML... How to know if your doctor really

> knows what they are

> talking about. "

>

>

>

> I guess I'm saying... as a patient you are dumped into

> a world of complete

> unknown... trusting that the onocologist that your primary

> doctor sent you

> to is full of knowledge and complete understanding. It

> would have been nice

> to know that there are different specialties in onocology.

>

> Also, include the terms and definitions of CML.

> And a sample CBC lab results with more detailed info.

>

> This is what popped into my head when reading your inquiry.

> It seems like...

> you find out you have CML and within hours you are thrust

> into a world of

> medicines and " saving your life " . Knowing that

> you have a good doctor would

> have been cool.

>

> Tammy

>

>

>

> _____

>

> From: [mailto: ] On

> Behalf Of Barb

> Stanley

> Sent: Tuesday, March 17, 2009 10:57 PM

>

> Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

>

>

>

> Hello dear CML survivors

> I was called last Friday for a 45 minute interview from

> Novartis for the

> Patient Advisory board April 24,25,26 in Houston. Evidently

> the interview

> went well. They notified me today I was chosen. Since it is

> now real, I

> would love as many questions and suggestions that you may

> have on what kind

> of education you would have liked, on gleevec or on tasigna

> before or when

> you began. I want to represent you as well as I can and

> plan a report back

> to you when I return. So far, I have 2 pages of questions.

> I also found out my name was submitted from my oncologist

> for this. I

> wondered how that happened. The info I recieved today

> indicates that

> Novartis wants to know what kind of patient education would

> be helpful.

>

> I have said from the beginning, it makes no sense for me to

> have cancer

> unless it brings enlightenmemt, knowledge and power to

> people. Please feel

> free to email me privately, to let me know what I should

> bring with me to

> represent you best. I plan a report to all when I return.

> Blessings my good survivors,

> Barb

>

>

>

>

>

>

>

[Guest guest]

Barb

congratulations on your representing all of us... I would love to know

why Tasigna keeps my blood counts so low.  For Instance platlets

go below 10 down to one or two I even had zero.  Why pack cells

are depleted about twice a month, and I need and infusions. 

Why it lowers the ANC and the big question is there anything

that can be done to increase the above..

thanks

From: Barb Stanley <barbarastanley@...>

Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

Date: Tuesday, March 17, 2009, 11:56 PM

Hello dear CML survivors

I was called last Friday for a 45 minute interview from Novartis for the Patient

Advisory board April 24,25,26 in Houston. Evidently the interview went well.

They notified me today I was chosen. Since it is now real, I would love as many

questions and suggestions that you may have on what kind of education you would

have liked, on gleevec or on tasigna before or when you began. I want to

represent you as well as I can and plan a report back to you when I return. So

far, I have 2 pages of questions.

I also found out my name was submitted from my oncologist for this. I wondered

how that happened. The info I recieved today indicates that Novartis wants to

know what kind of patient education would be helpful.

I have said from the beginning, it makes no sense for me to have cancer unless

it brings enlightenmemt, knowledge and power to people. Please feel free to

email me privately, to let me know what I should

bring with me to represent you best. I plan a report to all when I return.

Blessings my good survivors,

Barb

[Guest guest]

Tammy

I am cutting and pasting all replies to take with me. Thanks for your input. I

will formulate a report to all when I am done.

Peace

Barb

>

> I would like an easy to read " What your doctor should be telling you. " Or

> " You have CML... How to know if your doctor really knows what they are

> talking about. "

>

>

>

> I guess I'm saying... as a patient you are dumped into a world of complete

> unknown... trusting that the onocologist that your primary doctor sent you

> to is full of knowledge and complete understanding. It would have been nice

> to know that there are different specialties in onocology.

>

> Also, include the terms and definitions of CML.

> And a sample CBC lab results with more detailed info.

>

> This is what popped into my head when reading your inquiry. It seems like...

> you find out you have CML and within hours you are thrust into a world of

> medicines and " saving your life " . Knowing that you have a good doctor would

> have been cool.

>

> Tammy

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of Barb

> Stanley

> Sent: Tuesday, March 17, 2009 10:57 PM

>

> Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

>

>

>

> Hello dear CML survivors

> I was called last Friday for a 45 minute interview from Novartis for the

> Patient Advisory board April 24,25,26 in Houston. Evidently the interview

> went well. They notified me today I was chosen. Since it is now real, I

> would love as many questions and suggestions that you may have on what kind

> of education you would have liked, on gleevec or on tasigna before or when

> you began. I want to represent you as well as I can and plan a report back

> to you when I return. So far, I have 2 pages of questions.

> I also found out my name was submitted from my oncologist for this. I

> wondered how that happened. The info I recieved today indicates that

> Novartis wants to know what kind of patient education would be helpful.

>

> I have said from the beginning, it makes no sense for me to have cancer

> unless it brings enlightenmemt, knowledge and power to people. Please feel

> free to email me privately, to let me know what I should bring with me to

> represent you best. I plan a report to all when I return.

> Blessings my good survivors,

> Barb

>

>

>

>

>

>

>

[Guest guest]

Chi

I got it and thanks for taking the time.

More to follow....

Barb

>

> > From: Tammy Ferns <tammy@...>

> > Subject: RE: [ ] Novartis Advisory Board- Tasigna/Gleevec

> >

> > Date: Tuesday, March 17, 2009, 9:06 PM

> > I would like an easy to read " What your doctor should

> > be telling you. " Or

> > " You have CML... How to know if your doctor really

> > knows what they are

> > talking about. "

> >

> >

> >

> > I guess I'm saying... as a patient you are dumped into

> > a world of complete

> > unknown... trusting that the onocologist that your primary

> > doctor sent you

> > to is full of knowledge and complete understanding. It

> > would have been nice

> > to know that there are different specialties in onocology.

> >

> > Also, include the terms and definitions of CML.

> > And a sample CBC lab results with more detailed info.

> >

> > This is what popped into my head when reading your inquiry.

> > It seems like...

> > you find out you have CML and within hours you are thrust

> > into a world of

> > medicines and " saving your life " . Knowing that

> > you have a good doctor would

> > have been cool.

> >

> > Tammy

> >

> >

> >

> > _____

> >

> > From: [mailto: ] On

> > Behalf Of Barb

> > Stanley

> > Sent: Tuesday, March 17, 2009 10:57 PM

> >

> > Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

> >

> >

> >

> > Hello dear CML survivors

> > I was called last Friday for a 45 minute interview from

> > Novartis for the

> > Patient Advisory board April 24,25,26 in Houston. Evidently

> > the interview

> > went well. They notified me today I was chosen. Since it is

> > now real, I

> > would love as many questions and suggestions that you may

> > have on what kind

> > of education you would have liked, on gleevec or on tasigna

> > before or when

> > you began. I want to represent you as well as I can and

> > plan a report back

> > to you when I return. So far, I have 2 pages of questions.

> > I also found out my name was submitted from my oncologist

> > for this. I

> > wondered how that happened. The info I recieved today

> > indicates that

> > Novartis wants to know what kind of patient education would

> > be helpful.

> >

> > I have said from the beginning, it makes no sense for me to

> > have cancer

> > unless it brings enlightenmemt, knowledge and power to

> > people. Please feel

> > free to email me privately, to let me know what I should

> > bring with me to

> > represent you best. I plan a report to all when I return.

> > Blessings my good survivors,

> > Barb

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks Skip, and I will add your input to the long list...

It is growing by the minute.

Be well,

Barb

>

>

> From: Barb Stanley <barbarastanley@...>

> Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

>

> Date: Tuesday, March 17, 2009, 11:56 PM

>

>

>

>

>

>

> Hello dear CML survivors

> I was called last Friday for a 45 minute interview from Novartis for the

Patient Advisory board April 24,25,26 in Houston. Evidently the interview went

well. They notified me today I was chosen. Since it is now real, I would love as

many questions and suggestions that you may have on what kind of education you

would have liked, on gleevec or on tasigna before or when you began. I want to

represent you as well as I can and plan a report back to you when I return. So

far, I have 2 pages of questions.

> I also found out my name was submitted from my oncologist for this. I wondered

how that happened. The info I recieved today indicates that Novartis wants to

know what kind of patient education would be helpful.

>

> I have said from the beginning, it makes no sense for me to have cancer unless

it brings enlightenmemt, knowledge and power to people. Please feel free to

email me privately, to let me know what I should

> bring with me to represent you best. I plan a report to all when I return.

> Blessings my good survivors,

> Barb

>

[Guest guest]

Tammy , you took the words right out of my mouth.

Eva

From: Barb Stanley

Sent: Wednesday, March 18, 2009 8:36 AM

Subject: Re: [ ] Novartis Advisory Board- Tasigna/Gleevec

Tammy

I am cutting and pasting all replies to take with me. Thanks for your input. I

will formulate a report to all when I am done.

Peace

Barb

>

> I would like an easy to read " What your doctor should be telling you. " Or

> " You have CML... How to know if your doctor really knows what they are

> talking about. "

>

>

>

> I guess I'm saying... as a patient you are dumped into a world of complete

> unknown... trusting that the onocologist that your primary doctor sent you

> to is full of knowledge and complete understanding. It would have been nice

> to know that there are different specialties in onocology.

>

> Also, include the terms and definitions of CML.

> And a sample CBC lab results with more detailed info.

>

> This is what popped into my head when reading your inquiry. It seems like...

> you find out you have CML and within hours you are thrust into a world of

> medicines and " saving your life " . Knowing that you have a good doctor would

> have been cool.

>

> Tammy

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of Barb

> Stanley

> Sent: Tuesday, March 17, 2009 10:57 PM

>

> Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

>

>

>

> Hello dear CML survivors

> I was called last Friday for a 45 minute interview from Novartis for the

> Patient Advisory board April 24,25,26 in Houston. Evidently the interview

> went well. They notified me today I was chosen. Since it is now real, I

> would love as many questions and suggestions that you may have on what kind

> of education you would have liked, on gleevec or on tasigna before or when

> you began. I want to represent you as well as I can and plan a report back

> to you when I return. So far, I have 2 pages of questions.

> I also found out my name was submitted from my oncologist for this. I

> wondered how that happened. The info I recieved today indicates that

> Novartis wants to know what kind of patient education would be helpful.

>

> I have said from the beginning, it makes no sense for me to have cancer

> unless it brings enlightenmemt, knowledge and power to people. Please feel

> free to email me privately, to let me know what I should bring with me to

> represent you best. I plan a report to all when I return.

> Blessings my good survivors,

> Barb

>

>

>

>

>

>

>

[Guest guest]

Hi Skip,

When you were off all drugs, did your counts bounce back to normal?

Tasigna and all the TKI's for that matter, interfere with hematopoiesis to some

extent (the formation of blood cells). This is why we see our counts drop

during treatment. The fewer cells we have that are normal, the fewer cells

we're going to have overall because the drugs are killing the cancerous cells.

I suspect that after so many years with CML, your marrow has been strained and

probably has a more difficult time making normal cells which is leaving you with

very low counts.

Platelets have a very short life span whether they're made by your own marrow or

infused with a donation from someone else. This is why you continue to need

infusions. The normal lifespan of a platelet is only about 5 days from birth to

death.

Tracey

>

>

> From: Barb Stanley <barbarastanley@...>

> Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

>

> Date: Tuesday, March 17, 2009, 11:56 PM

>

>

>

>

>

>

> Hello dear CML survivors

> I was called last Friday for a 45 minute interview from Novartis for the

Patient Advisory board April 24,25,26 in Houston. Evidently the interview went

well. They notified me today I was chosen. Since it is now real, I would love as

many questions and suggestions that you may have on what kind of education you

would have liked, on gleevec or on tasigna before or when you began. I want to

represent you as well as I can and plan a report back to you when I return. So

far, I have 2 pages of questions.

> I also found out my name was submitted from my oncologist for this. I wondered

how that happened. The info I recieved today indicates that Novartis wants to

know what kind of patient education would be helpful.

>

> I have said from the beginning, it makes no sense for me to have cancer unless

it brings enlightenmemt, knowledge and power to people. Please feel free to

email me privately, to let me know what I should

> bring with me to represent you best. I plan a report to all when I return.

> Blessings my good survivors,

> Barb

>

[Guest guest]

Hi Tammy,

I think the only way to know if your doctor really knows what he/she is doing is

by doing your own research and seeing if he/she is following standard protocols

set out by the experts.

Another good tip is to research the doctor and see how active he/she is in the

world of CML, for instance, have they been published in any articles, have they

been involved in any research etc.

Simply asking them how many patients they have will also give you a clue. A

doctor who has less than 10 patients with CML isn't going to have the knowledge

or experience that a doctor with a few hundred has.

We're so lucky to be diagnosed in this day in age, not just because of all the

medical advances that have been made but also because we have a wealth of

information right at our fingertips.

Tracey

>

> I would like an easy to read " What your doctor should be telling you. " Or

> " You have CML... How to know if your doctor really knows what they are

> talking about. "

>

>

>

> I guess I'm saying... as a patient you are dumped into a world of complete

> unknown... trusting that the onocologist that your primary doctor sent you

> to is full of knowledge and complete understanding. It would have been nice

> to know that there are different specialties in onocology.

>

> Also, include the terms and definitions of CML.

> And a sample CBC lab results with more detailed info.

>

> This is what popped into my head when reading your inquiry. It seems like...

> you find out you have CML and within hours you are thrust into a world of

> medicines and " saving your life " . Knowing that you have a good doctor would

> have been cool.

>

> Tammy

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of Barb

> Stanley

> Sent: Tuesday, March 17, 2009 10:57 PM

>

> Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

>

>

>

> Hello dear CML survivors

> I was called last Friday for a 45 minute interview from Novartis for the

> Patient Advisory board April 24,25,26 in Houston. Evidently the interview

> went well. They notified me today I was chosen. Since it is now real, I

> would love as many questions and suggestions that you may have on what kind

> of education you would have liked, on gleevec or on tasigna before or when

> you began. I want to represent you as well as I can and plan a report back

> to you when I return. So far, I have 2 pages of questions.

> I also found out my name was submitted from my oncologist for this. I

> wondered how that happened. The info I recieved today indicates that

> Novartis wants to know what kind of patient education would be helpful.

>

> I have said from the beginning, it makes no sense for me to have cancer

> unless it brings enlightenmemt, knowledge and power to people. Please feel

> free to email me privately, to let me know what I should bring with me to

> represent you best. I plan a report to all when I return.

> Blessings my good survivors,

> Barb

>

>

>

>

>

>

>

[Guest guest]

hi

no my counts had dropped from the first time I took Gleevec through Dasinib and

Tasigna

and never recovered. 

I know that all these drugs fool around with blood counts.  I was just wondering

if

the company is working to overcome this side effect.

Thanks for the reply

SkipD

From: Tracey <traceyincanada@...>

Subject: Re: [ ] Novartis Advisory Board- Tasigna/Gleevec

Date: Wednesday, March 18, 2009, 10:32 PM

Hi Skip,

When you were off all drugs, did your counts bounce back to normal?

Tasigna and all the TKI's for that matter, interfere with hematopoiesis to some

extent (the formation of blood cells). This is why we see our counts drop during

treatment. The fewer cells we have that are normal, the fewer cells we're going

to have overall because the drugs are killing the cancerous cells.

I suspect that after so many years with CML, your marrow has been strained and

probably has a more difficult time making normal cells which is leaving you with

very low counts.

Platelets have a very short life span whether they're made by your own marrow or

infused with a donation from someone else. This is why you continue to need

infusions. The normal lifespan of a platelet is only about 5 days from birth to

death.

Tracey

>

>

> From: Barb Stanley <barbarastanley@ ...>

> Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

> groups (DOT) com

> Date: Tuesday, March 17, 2009, 11:56 PM

>

>

>

>

>

>

> Hello dear CML survivors

> I was called last Friday for a 45 minute interview from Novartis for the

Patient Advisory board April 24,25,26 in Houston. Evidently the interview went

well. They notified me today I was chosen. Since it is now real, I would love as

many questions and suggestions that you may have on what kind of education you

would have liked, on gleevec or on tasigna before or when you began. I want to

represent you as well as I can and plan a report back to you when I return. So

far, I have 2 pages of questions.

> I also found out my name was submitted from my oncologist for this. I wondered

how that happened. The info I recieved today indicates that Novartis wants to

know what kind of patient education would be helpful.

>

> I have said from the beginning, it makes no sense for me to have cancer unless

it brings enlightenmemt, knowledge and power to people. Please feel free to

email me privately, to let me know what I should

> bring with me to represent you best. I plan a report to all when I return.

> Blessings my good survivors,

> Barb

>

[Guest guest]

More readily available info on how to pay for this medicine. I remember that was

the worst thing. It shouldn't be so hard to find out this info.

[ ] Novartis Advisory Board- Tasigna/Gleevec

>

>

>

> Hello dear CML survivors

> I was called last Friday for a 45 minute interview from Novartis for the

> Patient Advisory board April 24,25,26 in Houston. Evidently the interview

> went well. They notified me today I was chosen. Since it is now real, I

> would love as many questions and suggestions that you may have on what kind

> of education you would have liked, on gleevec or on tasigna before or when

> you began. I want to represent you as well as I can and plan a report back

> to you when I return. So far, I have 2 pages of questions.

> I also found out my name was submitted from my oncologist for this. I

> wondered how that happened. The info I recieved today indicates that

> Novartis wants to know what kind of patient education would be helpful.

>

> I have said from the beginning, it makes no sense for me to have cancer

> unless it brings enlightenmemt, knowledge and power to people. Please feel

> free to email me privately, to let me know what I should bring with me to

> represent you best. I plan a report to all when I return.

> Blessings my good survivors,

> Barb

>

>

>

>

>

>

>

[Guest guest]

Hi Barb,

I fairly new to the group (and blogging) but I saw your post and felt compelled

to reply. I am 27 and I've been on Gleevec since my diagnosis last January. It

has severely impacted my hormone levels, and as a result, I have premature

ovarian failure. I am currently taking estrogen and testosterone to slow the

effects of menopause, but this is the part I can live with. What bothers me is

that I feel like I am completely helpless because I can't find any information

that pertains to me. I know it is rare for a female in her mid-twenties to have

CML, but I can't be the only one. Why can't I find more information on how

Gleevec effects hormones? More importantly, why don't doctors discuss fertility

options (egg harvesting and freezing) with newly diagnosed patients? I will end

my rant here, but I am happy to discuss my concerns if you need more detail.

Thank you!

> >

> > > From: Tammy Ferns <tammy@>

> > > Subject: RE: [ ] Novartis Advisory Board- Tasigna/Gleevec

> > >

> > > Date: Tuesday, March 17, 2009, 9:06 PM

> > > I would like an easy to read " What your doctor should

> > > be telling you. " Or

> > > " You have CML... How to know if your doctor really

> > > knows what they are

> > > talking about. "

> > >

> > >

> > >

> > > I guess I'm saying... as a patient you are dumped into

> > > a world of complete

> > > unknown... trusting that the onocologist that your primary

> > > doctor sent you

> > > to is full of knowledge and complete understanding. It

> > > would have been nice

> > > to know that there are different specialties in onocology.

> > >

> > > Also, include the terms and definitions of CML.

> > > And a sample CBC lab results with more detailed info.

> > >

> > > This is what popped into my head when reading your inquiry.

> > > It seems like...

> > > you find out you have CML and within hours you are thrust

> > > into a world of

> > > medicines and " saving your life " . Knowing that

> > > you have a good doctor would

> > > have been cool.

> > >

> > > Tammy

> > >

> > >

> > >

> > > _____

> > >

> > > From: [mailto: ] On

> > > Behalf Of Barb

> > > Stanley

> > > Sent: Tuesday, March 17, 2009 10:57 PM

> > >

> > > Subject: [ ] Novartis Advisory Board- Tasigna/Gleevec

> > >

> > >

> > >

> > > Hello dear CML survivors

> > > I was called last Friday for a 45 minute interview from

> > > Novartis for the

> > > Patient Advisory board April 24,25,26 in Houston. Evidently

> > > the interview

> > > went well. They notified me today I was chosen. Since it is

> > > now real, I

> > > would love as many questions and suggestions that you may

> > > have on what kind

> > > of education you would have liked, on gleevec or on tasigna

> > > before or when

> > > you began. I want to represent you as well as I can and

> > > plan a report back

> > > to you when I return. So far, I have 2 pages of questions.

> > > I also found out my name was submitted from my oncologist

> > > for this. I

> > > wondered how that happened. The info I recieved today

> > > indicates that

> > > Novartis wants to know what kind of patient education would

> > > be helpful.

> > >

> > > I have said from the beginning, it makes no sense for me to

> > > have cancer

> > > unless it brings enlightenmemt, knowledge and power to

> > > people. Please feel

> > > free to email me privately, to let me know what I should

> > > bring with me to

> > > represent you best. I plan a report to all when I return.

> > > Blessings my good survivors,

> > > Barb

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

You certainly have some vital issues. I will do what I can to ask those

pertinent questions. Thanks for the post.

Barb

>

> Hi Barb,

> I fairly new to the group (and blogging) but I saw your post and felt

compelled to reply. I am 27 and I've been on Gleevec since my diagnosis last

January. It has severely impacted my hormone levels, and as a result, I have

premature ovarian failure. I am currently taking estrogen and testosterone to

slow the effects of menopause, but this is the part I can live with. What

bothers me is that I feel like I am completely helpless because I can't find any

information that pertains to me. I know it is rare for a female in her

mid-twenties to have CML, but I can't be the only one. Why can't I find more

information on how Gleevec effects hormones? More importantly, why don't doctors

discuss fertility options (egg harvesting and freezing) with newly diagnosed

patients? I will end my rant here, but I am happy to discuss my concerns if you

need more detail. Thank you!