Re: Today's Cancercare Teleconference (ridiculously long, sorry)

[Guest guest]

Hi Tracey,

Thank you for the excellent report on the Cancercare Teleconference. Other

than listening to some familiar voices, I don't feel that I missed anything.

No need to apologize for the length. It was just perfect.

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, 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

PCRU 5/02 at RVH (Questionable)

2.8 log reduction Sep/05

3.0 log reduction Jan/06

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

----Original Message Follows----

From: " Tracey " <traceyincanada@...>

Reply-

Subject: [ ] Today's Cancercare Teleconference (ridiculously long,

sorry)

Date: Tue, 19 Dec 2006 20:58:22 -0000

Hi Everyone,

Thanks to Zavie for reminding me about today's teleconference. This

talk had three world renowned experts which I'll try to summarize.

Let me apologize now for the length of this post because I can forsee

that it's going to be long.

First to speak was Dr. Cortes. He gave a basic overview of what CML

is and went on to to say that 40% of patients will achieve a major

molecular response after one year of treatment with Gleevec. He also

said that the great majority of responses will be durable.

He talked a little bit about Sprycel. He said it's 300 times more

potent than Gleevec and for 50% of the patients that failed Gleevec,

they were able to achieve a CCR with Sprycel.

He emphasized the importance of good monitoring to identify poor

responders so that they can move onto different treatments since

there are so many options now.

Dr. Mauro spoke next and went over a bit of what was said in last

week's teleconference such as the fact that the risk of relapse is

diminishing with time. He reiterated that the heart toxicity was not

believed to be a concern in terms of the numbers of people who have

developed it and he said that it's hard to pin point Gleevec as the

cause of the heart toxicities since outside factors must be taken

into consideration.

He mentioned that side effects also seem to be diminishing over time

(I can't help but wonder if that's because we've all gotten so used

to living with them that we don't bother to report them anymore

though).

He said at one point that they're working on developing tests that

will be able to determine how a patient is metabolizing their drug

treatment, not just by showing the serum levels but also by looking

at how the cells are absorbing the drug. This will show if the drug

is having the desired effect or if it's not effective enough, or

perhaps too effective (toxic). These tests are very preliminary and

aren't available now but knowing that they're working on them sure

gets me excited

He mentioned that there's a Farnesyl Transferase Inhibitor (FTI) that

is showing promise at eradicating those stubborn quiescent cells that

neither Gleevec nor Sprycel are able to kill. (Wow, how great is

that!)

Dr. Shah spoke next and encouraged everyone to participate in

clinical trials. Even those with very little residual disease, could

participate in some of the trials that are offered. It's through

clinical trials that we learn valuable information and he offered a

website that lists many of the available clinical trials. It's

www.cancer.gov then search for a clinical trial that fits your

criteria.

He stressed the importance of getting an expert opinion regarding

treatment. He acknowledged that CML is quite rare and not all

doctors are experienced in treating it. He also said that few

doctors are able to keep up with the rapid changes and developments

that are made. It's important to get accurate and up to date

information.

He mentioned that online patient advocacy groups can be very helpful

for patients and can help to educate patients about CML. (I think

this was the first time I've heard a doctor acknowledge our groups in

a positive way

He mentioned again that 400mg of Gleevec is the standard dose. He

also mentioned that some patients will need growth factors during

treatment which will require close monitoring.

He said that calcium and magnesium supplements can often help with

the muscle cramps that many of us get and that 20%-40% of patients

report bone or joint pain which can be treated with Ibuprophen as

long as platelet counts are healthy and there's no history of

gastrointestinal bleeding.

He cautioned people on Spycel who experience a dry cough or shortness

of breath to report it to their doctors and get an X-ray to check for

plural effusion.

He emphasized that patients must have good communication with their

doctors and that it's important to continue treatment without

interruption whenever possible.

Finally he mentioned that quality of life issues are important

especially when it comes to people being compliant with their

medication.

A social worker named Rick Dickens spoke briefly and gave three tips

for dealing with cancer.

1) Research your disease and treatments as much as you can, the

internet is great for this. An informed patient is an empowered

patient.

2) Take your time, decisions don't have to be made on the spot.

3) Speak up and bring all your concerns to your cancer care team. If

you don't talk about it, you can't deal with it.

There was a short question and answer period that followed these

speakers which I'll summarize.

One caller asked if there were any trials for patients who are PCRU.

The answer was no because there's nothing to measure in these

patients. They need to be able to measure something in order to know

if the treatment has any effect.

The next patient asked if there was any evidence that Gleevec could

cause kidney problems such as elevated creatinine levels. Dr. Shah

said that he's never seen it and Dr. Cortes said that there might be

some anecdotal stories about it happening but since there are so many

other factors that can contribute to it, he doesn't believe it's a

problem with Gleevec.

The next caller asked if they're recommending BMT's to anyone

anymore. They said not as front line treatment but for someone who

is young, has a perfect match and is the " perfect candidate " , they

would consider it as a second line treatment option if Gleevec

fails. Also for those in blast crisis since responses to treatments

typically don't last for blast crisis patients.

The next caller asked if CML inevitably progresses to to the more

advanced stages at some point. They said that Gleevec has changed

the history of CML and that we can be hopeful that CML will be

manageable for a normal life span.

The last question was about eye hemorrhages and low counts. They

didn't seem to say much about the eye hemorrhages. They said that

people with low red counts should investigate to see if there is any

internal bleeding going on (ie. an ulcer). Low white counts are

common enough even in people with GIST who are taking Gleevec but

they didn't say much more than that.

Sorry again that this was so long,

Tracey

[Guest guest]

Hi Tracey! Thank you for posting such excellent details about the

CML Ash meeting Teleconference. I also listened to the conference

but your notes were sooo good, I also sent them onto my own

Hem/Onc! Did you take shorthand or did you tape record it? You are

good!

Sincerely, Lynn

>

> Hi Everyone,

>

> Thanks to Zavie for reminding me about today's teleconference.

This

> talk had three world renowned experts which I'll try to

summarize.

> Let me apologize now for the length of this post because I can

forsee

> that it's going to be long.

>

> First to speak was Dr. Cortes. He gave a basic overview of what

CML

> is and went on to to say that 40% of patients will achieve a major

> molecular response after one year of treatment with Gleevec. He

also

> said that the great majority of responses will be durable.

>

> He talked a little bit about Sprycel. He said it's 300 times more

> potent than Gleevec and for 50% of the patients that failed

Gleevec,

> they were able to achieve a CCR with Sprycel.

>

> He emphasized the importance of good monitoring to identify poor

> responders so that they can move onto different treatments since

> there are so many options now.

>

> Dr. Mauro spoke next and went over a bit of what was said in last

> week's teleconference such as the fact that the risk of relapse is

> diminishing with time. He reiterated that the heart toxicity was

not

> believed to be a concern in terms of the numbers of people who

have

> developed it and he said that it's hard to pin point Gleevec as

the

> cause of the heart toxicities since outside factors must be taken

> into consideration.

>

> He mentioned that side effects also seem to be diminishing over

time

> (I can't help but wonder if that's because we've all gotten so

used

> to living with them that we don't bother to report them anymore

> though).

>

> He said at one point that they're working on developing tests that

> will be able to determine how a patient is metabolizing their drug

> treatment, not just by showing the serum levels but also by

looking

> at how the cells are absorbing the drug. This will show if the

drug

> is having the desired effect or if it's not effective enough, or

> perhaps too effective (toxic). These tests are very preliminary

and

> aren't available now but knowing that they're working on them sure

> gets me excited

>

> He mentioned that there's a Farnesyl Transferase Inhibitor (FTI)

that

> is showing promise at eradicating those stubborn quiescent cells

that

> neither Gleevec nor Sprycel are able to kill. (Wow, how great is

> that!)

>

> Dr. Shah spoke next and encouraged everyone to participate in

> clinical trials. Even those with very little residual disease,

could

> participate in some of the trials that are offered. It's through

> clinical trials that we learn valuable information and he offered

a

> website that lists many of the available clinical trials. It's

> www.cancer.gov then search for a clinical trial that fits your

> criteria.

>

> He stressed the importance of getting an expert opinion regarding

> treatment. He acknowledged that CML is quite rare and not all

> doctors are experienced in treating it. He also said that few

> doctors are able to keep up with the rapid changes and

developments

> that are made. It's important to get accurate and up to date

> information.

>

> He mentioned that online patient advocacy groups can be very

helpful

> for patients and can help to educate patients about CML. (I think

> this was the first time I've heard a doctor acknowledge our groups

in

> a positive way

>

> He mentioned again that 400mg of Gleevec is the standard dose. He

> also mentioned that some patients will need growth factors during

> treatment which will require close monitoring.

>

> He said that calcium and magnesium supplements can often help with

> the muscle cramps that many of us get and that 20%-40% of patients

> report bone or joint pain which can be treated with Ibuprophen as

> long as platelet counts are healthy and there's no history of

> gastrointestinal bleeding.

>

> He cautioned people on Spycel who experience a dry cough or

shortness

> of breath to report it to their doctors and get an X-ray to check

for

> plural effusion.

>

> He emphasized that patients must have good communication with

their

> doctors and that it's important to continue treatment without

> interruption whenever possible.

>

> Finally he mentioned that quality of life issues are important

> especially when it comes to people being compliant with their

> medication.

>

> A social worker named Rick Dickens spoke briefly and gave three

tips

> for dealing with cancer.

> 1) Research your disease and treatments as much as you can, the

> internet is great for this. An informed patient is an empowered

> patient.

> 2) Take your time, decisions don't have to be made on the spot.

> 3) Speak up and bring all your concerns to your cancer care team.

If

> you don't talk about it, you can't deal with it.

>

> There was a short question and answer period that followed these

> speakers which I'll summarize.

>

> One caller asked if there were any trials for patients who are

PCRU.

> The answer was no because there's nothing to measure in these

> patients. They need to be able to measure something in order to

know

> if the treatment has any effect.

>

> The next patient asked if there was any evidence that Gleevec

could

> cause kidney problems such as elevated creatinine levels. Dr.

Shah

> said that he's never seen it and Dr. Cortes said that there might

be

> some anecdotal stories about it happening but since there are so

many

> other factors that can contribute to it, he doesn't believe it's a

> problem with Gleevec.

>

> The next caller asked if they're recommending BMT's to anyone

> anymore. They said not as front line treatment but for someone

who

> is young, has a perfect match and is the " perfect candidate " , they

> would consider it as a second line treatment option if Gleevec

> fails. Also for those in blast crisis since responses to

treatments

> typically don't last for blast crisis patients.

>

> The next caller asked if CML inevitably progresses to to the more

> advanced stages at some point. They said that Gleevec has changed

> the history of CML and that we can be hopeful that CML will be

> manageable for a normal life span.

>

> The last question was about eye hemorrhages and low counts. They

> didn't seem to say much about the eye hemorrhages. They said that

> people with low red counts should investigate to see if there is

any

> internal bleeding going on (ie. an ulcer). Low white counts are

> common enough even in people with GIST who are taking Gleevec but

> they didn't say much more than that.

>

> Sorry again that this was so long,

> Tracey

>

[Guest guest]

Hi Lynn,

Thanks for the compliment. No I never took shorthand but I did take

my share of classes in University where professors talked really

fast. I got used to taking notes using my own shortforms and

throughout University this was how I got by. Then when I got home,

I'd recopy my notes in a nice and legible way because those fast,

messy notes that I took are really hard to read, even for me

Tracey

-- In , " Lynn & Pete " <petenlynn@...> wrote:

>

>

> Hi Tracey! Thank you for posting such excellent details about the

> CML Ash meeting Teleconference. I also listened to the conference

> but your notes were sooo good, I also sent them onto my own

> Hem/Onc! Did you take shorthand or did you tape record it? You

are

> good!

>

> Sincerely, Lynn

>

>

>

>

>

>

>

>

> >

> > Hi Everyone,

> >

> > Thanks to Zavie for reminding me about today's teleconference.

> This

> > talk had three world renowned experts which I'll try to

> summarize.

> > Let me apologize now for the length of this post because I can

> forsee

> > that it's going to be long.

> >

> > First to speak was Dr. Cortes. He gave a basic overview of what

> CML

> > is and went on to to say that 40% of patients will achieve a

major

> > molecular response after one year of treatment with Gleevec. He

> also

> > said that the great majority of responses will be durable.

> >

> > He talked a little bit about Sprycel. He said it's 300 times

more

> > potent than Gleevec and for 50% of the patients that failed

> Gleevec,

> > they were able to achieve a CCR with Sprycel.

> >

> > He emphasized the importance of good monitoring to identify poor

> > responders so that they can move onto different treatments since

> > there are so many options now.

> >

> > Dr. Mauro spoke next and went over a bit of what was said in last

> > week's teleconference such as the fact that the risk of relapse

is

> > diminishing with time. He reiterated that the heart toxicity was

> not

> > believed to be a concern in terms of the numbers of people who

> have

> > developed it and he said that it's hard to pin point Gleevec as

> the

> > cause of the heart toxicities since outside factors must be taken

> > into consideration.

> >

> > He mentioned that side effects also seem to be diminishing over

> time

> > (I can't help but wonder if that's because we've all gotten so

> used

> > to living with them that we don't bother to report them anymore

> > though).

> >

> > He said at one point that they're working on developing tests

that

> > will be able to determine how a patient is metabolizing their

drug

> > treatment, not just by showing the serum levels but also by

> looking

> > at how the cells are absorbing the drug. This will show if the

> drug

> > is having the desired effect or if it's not effective enough, or

> > perhaps too effective (toxic). These tests are very preliminary

> and

> > aren't available now but knowing that they're working on them

sure

> > gets me excited

> >

> > He mentioned that there's a Farnesyl Transferase Inhibitor (FTI)

> that

> > is showing promise at eradicating those stubborn quiescent cells

> that

> > neither Gleevec nor Sprycel are able to kill. (Wow, how great is

> > that!)

> >

> > Dr. Shah spoke next and encouraged everyone to participate in

> > clinical trials. Even those with very little residual disease,

> could

> > participate in some of the trials that are offered. It's through

> > clinical trials that we learn valuable information and he offered

> a

> > website that lists many of the available clinical trials. It's

> > www.cancer.gov then search for a clinical trial that fits your

> > criteria.

> >

> > He stressed the importance of getting an expert opinion regarding

> > treatment. He acknowledged that CML is quite rare and not all

> > doctors are experienced in treating it. He also said that few

> > doctors are able to keep up with the rapid changes and

> developments

> > that are made. It's important to get accurate and up to date

> > information.

> >

> > He mentioned that online patient advocacy groups can be very

> helpful

> > for patients and can help to educate patients about CML. (I

think

> > this was the first time I've heard a doctor acknowledge our

groups

> in

> > a positive way

> >

> > He mentioned again that 400mg of Gleevec is the standard dose.

He

> > also mentioned that some patients will need growth factors during

> > treatment which will require close monitoring.

> >

> > He said that calcium and magnesium supplements can often help

with

> > the muscle cramps that many of us get and that 20%-40% of

patients

> > report bone or joint pain which can be treated with Ibuprophen as

> > long as platelet counts are healthy and there's no history of

> > gastrointestinal bleeding.

> >

> > He cautioned people on Spycel who experience a dry cough or

> shortness

> > of breath to report it to their doctors and get an X-ray to check

> for

> > plural effusion.

> >

> > He emphasized that patients must have good communication with

> their

> > doctors and that it's important to continue treatment without

> > interruption whenever possible.

> >

> > Finally he mentioned that quality of life issues are important

> > especially when it comes to people being compliant with their

> > medication.

> >

> > A social worker named Rick Dickens spoke briefly and gave three

> tips

> > for dealing with cancer.

> > 1) Research your disease and treatments as much as you can, the

> > internet is great for this. An informed patient is an empowered

> > patient.

> > 2) Take your time, decisions don't have to be made on the spot.

> > 3) Speak up and bring all your concerns to your cancer care

team.

> If

> > you don't talk about it, you can't deal with it.

> >

> > There was a short question and answer period that followed these

> > speakers which I'll summarize.

> >

> > One caller asked if there were any trials for patients who are

> PCRU.

> > The answer was no because there's nothing to measure in these

> > patients. They need to be able to measure something in order to

> know

> > if the treatment has any effect.

> >

> > The next patient asked if there was any evidence that Gleevec

> could

> > cause kidney problems such as elevated creatinine levels. Dr.

> Shah

> > said that he's never seen it and Dr. Cortes said that there might

> be

> > some anecdotal stories about it happening but since there are so

> many

> > other factors that can contribute to it, he doesn't believe it's

a

> > problem with Gleevec.

> >

> > The next caller asked if they're recommending BMT's to anyone

> > anymore. They said not as front line treatment but for someone

> who

> > is young, has a perfect match and is the " perfect candidate " ,

they

> > would consider it as a second line treatment option if Gleevec

> > fails. Also for those in blast crisis since responses to

> treatments

> > typically don't last for blast crisis patients.

> >

> > The next caller asked if CML inevitably progresses to to the more

> > advanced stages at some point. They said that Gleevec has

changed

> > the history of CML and that we can be hopeful that CML will be

> > manageable for a normal life span.

> >

> > The last question was about eye hemorrhages and low counts. They

> > didn't seem to say much about the eye hemorrhages. They said

that

> > people with low red counts should investigate to see if there is

> any

> > internal bleeding going on (ie. an ulcer). Low white counts are

> > common enough even in people with GIST who are taking Gleevec but

> > they didn't say much more than that.

> >

> > Sorry again that this was so long,

> > Tracey

> >

>