Re: Consultation on PCR testing decision

[Guest guest]

Folks,

I am a big college basketball fan, but their March

Madness is nothing compared to the weather in New

Jersey this week. It was 75 degrees here on Wednesday

and by Saturday morning we will have at least 5 inches

of snow and sleet.

I have a question for the great group of consultants

we have here on our " team " .

I got my December PCR tests back this week. I got

lazy and did not ask for them until I went to my

quarterly visit. The results were good.

My September results from LabCorp had me with a

reading of 00.030 (b2a2) and 00.004 (b3a2). My

December results were 00.019 (b2a2) and undetectable

(b3a2) once again from Lab Corp.

I also had July results from my visit to Dr. Drucker

visit which were undetectable for all break points and

positive for a follow up nested PCR test. The Year

before I was also undetectable at OHSU.

Based on the drop in the LabCorp #s from September to

December my Dr elected to skip this round of PCR. I

was hesitant but agreed as they showed a down trend.

My question is should I have agreed to skip it?

Thanks,

Chris

--- Yusuf Cipe <cipeyusuf@...> wrote:

> Thank you very much Tracey..

>

> Yusuf

>

> Tracey <traceyincanada@...> wrote:

> Hi Everyone,

>

> For anyone who wasn't able to listen to today's

> teleconference, (CML

> Treatment: Measuring Your Progress with Dr.

> Nimer of MSKCC),

> here are some notes that I took. Please note that

> this is the way I

> heard it and may or may not be accurate as I didn't

> actually record

> the talk.

>

> He started out the talk with an overview of CML

> explaining that CML

> is a myeloproliferative disease of the stem cells.

> It causes an

> increase in white cells, platelets and sometimes can

> also cause the

> Hgb to rise in patients. CML is easy to diagnose,

> they look for the

> presence of the Philadelphia chromosome using either

> cytogenetics,

> FISH or PCR. As soon as a diagnosis is made,

> treatment begins

> (unlike some other leukemias like CLL where they can

> sit and watch

> the disease for a while without treating it).

>

> He mentioned that 400mg Gleevec is still the

> standard dose (although

> 600mg does appear to give more patients the 3 log

> reduction) but

> studies are on going to compare the various doses.

> He said patients

> can start the 400mg right away, there's no need to

> work up to it. He

> also said that because the Gleevec kills off the bad

> cells quickly

> and the healthy cells take a little while to grow,

> it's very common

> to have to take a break from Gleevec in the first

> month or two. He

> stressed that lowering the dose is not recommended,

> that it's far

> more appropriate to take a break from the drug while

> the counts

> recover.

>

> He went over the data from the IRIS trial. Relapse

> rates in the 5th

> year were less than that in the 4th year which

> indicates that Gleevec

> works better and better over time.

>

> He explained that the way to monitor responses is

> with FISH and PCR

> every 3 months. As long as there is improvement, it

> doesn't really

> matter how long it takes to get a zero FISH. Some

> patients who still

> hadn't achieved CCR at 12 months, have gone on to

> get there at 18

> months so the speed of getting there may not be that

> important, as

> long as you get there.

>

> He said that reaching PCRU is very rare and the goal

> of therapy is to

> get a 3 log reduction which he explained is a

> thousand fold decrease

> in bcr/abl transcripts. Although 93% of patients who

> get a 3 log

> reduction, have managed to maintain their response

> over 5 years, it's

> still important to monitor with PCR every 3 months

> so that if a

> resistance develops, it will be identified early.

>

> If a patient's response starts to slip, he suggested

> that it would

> probably be better to switch drugs than to increase

> the dose of

> Gleevec.

>

> He mentioned that most mutations are responsive to

> Sprycel and he

> also mentioned AMN-107 saying that it binds more

> tightly to bcr/abl

> which makes it active on some mutations that Gleevec

> doesn't work on.

>

> He talked about the famous cardiotoxicity report

> that caused such a

> flap last year. He said that he hasn't seen any

> evidence to suggest

> that Gleevec can cause heart problems or if it does,

> it's certainly

> not a significant number of patients.

>

> He talked about the dosing of Sprycel, mentioning

> that the two

> standard doses are 70mg twice a day and 100mg once a

> day. He said

> that the 70mg twice a day was causing more pleural

> effusions so there

> is a trend towards the 100mg once a day dose which

> is less of a

> problem.

>

> He mentioned that very few patients are getting

> transplants now that

> there are so many successful drug therapy options.

> He did suggest

> however, those in accelerated or blast phase, should

> consider

> transplant as an option because drug therapy in this

> group of people

> doesn't seem to give durable responses.

>

> At this point, the telephone lines were opened and

> people were given

> a chance to ask questions.

>

> The first question was about surgeries and should

> patients take any

> precautions if they are planning for a surgery. He

> said that if

> there is a high risk of infection from the surgery,

> then it would be

> acceptable to stop taking Gleevec 1 week before the

> surgery to allow

> the white count to rise a bit (which will help if

> the patient gets an

> infection) but he said that for the majority of

> people on Gleevec,

> they manage surgeries the exact same way any normal

> person does.

>

> The second question was about resistance. He said

> that clinical

> decisions shouldn't be based on one test alone. It's

> the trend over

> time that matters. Especially with PCR's since they

> tend to bounce a

> lot. He said that if the PCR rises significantly on

> one test and

> then rises again on another, it should be watched

> closely.

> Resistance can usually be confirmed in about 6

> months time.

>

> The third question was about myelodysplasia. He said

> that

> myelodysplasia basically means " funny looking cells

> in the bone

> marrow " . He said that there are a significant number

> of Gleevec

> patients who appear to have " funny looking cells in

> their bone

> marrow " but that they don't really have

> myelodysplastic disease and

> the presence of these " funny cells " doesn't seem to

> have much

> significance.

>

> The fourth question was about survival expectations.

> He said that

> after 5 years, only 5% of patients have actually

> died of CML, another

> 5% have died of unrelated causes such as car

> accidents so he

> encouraged us all to look both ways before crossing

> the street

> because he thinks there's a good chance that we can

> all live out a

> normal life expectancy.

>

> The fifth question was about using Hydrea in

> treatment. He said some

> people still get Hydrea to start out if they have

> very high counts

> because it can reduce the counts quickly but Hydrea

> shouldn't be used

> long term as a means of controlling CML. Patients

> should either be

> on Gleevec or one of the other new drugs. If a

> patient is resistant

> to a current dose of Gleevec, there is no sense in

> continuing with

> that dose. It should be increased or changed for

> another drug.

>

> And the last question was about the various

> transcripts that the

> PCR's detect. He said most patients have only one

> transcript (ie

>

=== message truncated ===

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[Guest guest]

Hi

Your results are fabulous.

The experts say that you should test every 3 months.

I like to have them every 3 months and always from the same lab. This way I

can see a trend much better.

Is your doctor suggesting that you test every 6 months now?

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

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

[ ] Re: Consultation on PCR testing decision

Folks,

I am a big college basketball fan, but their March

Madness is nothing compared to the weather in New

Jersey this week. It was 75 degrees here on Wednesday

and by Saturday morning we will have at least 5 inches

of snow and sleet.

I have a question for the great group of consultants

we have here on our " team " .

I got my December PCR tests back this week. I got

lazy and did not ask for them until I went to my

quarterly visit. The results were good.

My September results from LabCorp had me with a

reading of 00.030 (b2a2) and 00.004 (b3a2). My

December results were 00.019 (b2a2) and undetectable

(b3a2) once again from Lab Corp.

I also had July results from my visit to Dr. Drucker

visit which were undetectable for all break points and

positive for a follow up nested PCR test. The Year

before I was also undetectable at OHSU.

Based on the drop in the LabCorp #s from September to

December my Dr elected to skip this round of PCR. I

was hesitant but agreed as they showed a down trend.

My question is should I have agreed to skip it?

Thanks,

Chris

--- Yusuf Cipe <cipeyusuf@...> wrote:

> Thank you very much Tracey..

>

> Yusuf

>

> Tracey <traceyincanada@...> wrote:

> Hi Everyone,

>

> For anyone who wasn't able to listen to today's

> teleconference, (CML

> Treatment: Measuring Your Progress with Dr.

> Nimer of MSKCC),

> here are some notes that I took. Please note that

> this is the way I

> heard it and may or may not be accurate as I didn't

> actually record

> the talk.

>

> He started out the talk with an overview of CML

> explaining that CML

> is a myeloproliferative disease of the stem cells.

> It causes an

> increase in white cells, platelets and sometimes can

> also cause the

> Hgb to rise in patients. CML is easy to diagnose,

> they look for the

> presence of the Philadelphia chromosome using either

> cytogenetics,

> FISH or PCR. As soon as a diagnosis is made,

> treatment begins

> (unlike some other leukemias like CLL where they can

> sit and watch

> the disease for a while without treating it).

>

> He mentioned that 400mg Gleevec is still the

> standard dose (although

> 600mg does appear to give more patients the 3 log

> reduction) but

> studies are on going to compare the various doses.

> He said patients

> can start the 400mg right away, there's no need to

> work up to it. He

> also said that because the Gleevec kills off the bad

> cells quickly

> and the healthy cells take a little while to grow,

> it's very common

> to have to take a break from Gleevec in the first

> month or two. He

> stressed that lowering the dose is not recommended,

> that it's far

> more appropriate to take a break from the drug while

> the counts

> recover.

>

> He went over the data from the IRIS trial. Relapse

> rates in the 5th

> year were less than that in the 4th year which

> indicates that Gleevec

> works better and better over time.

>

> He explained that the way to monitor responses is

> with FISH and PCR

> every 3 months. As long as there is improvement, it

> doesn't really

> matter how long it takes to get a zero FISH. Some

> patients who still

> hadn't achieved CCR at 12 months, have gone on to

> get there at 18

> months so the speed of getting there may not be that

> important, as

> long as you get there.

>

> He said that reaching PCRU is very rare and the goal

> of therapy is to

> get a 3 log reduction which he explained is a

> thousand fold decrease

> in bcr/abl transcripts. Although 93% of patients who

> get a 3 log

> reduction, have managed to maintain their response

> over 5 years, it's

> still important to monitor with PCR every 3 months

> so that if a

> resistance develops, it will be identified early.

>

> If a patient's response starts to slip, he suggested

> that it would

> probably be better to switch drugs than to increase

> the dose of

> Gleevec.

>

> He mentioned that most mutations are responsive to

> Sprycel and he

> also mentioned AMN-107 saying that it binds more

> tightly to bcr/abl

> which makes it active on some mutations that Gleevec

> doesn't work on.

>

> He talked about the famous cardiotoxicity report

> that caused such a

> flap last year. He said that he hasn't seen any

> evidence to suggest

> that Gleevec can cause heart problems or if it does,

> it's certainly

> not a significant number of patients.

>

> He talked about the dosing of Sprycel, mentioning

> that the two

> standard doses are 70mg twice a day and 100mg once a

> day. He said

> that the 70mg twice a day was causing more pleural

> effusions so there

> is a trend towards the 100mg once a day dose which

> is less of a

> problem.

>

> He mentioned that very few patients are getting

> transplants now that

> there are so many successful drug therapy options.

> He did suggest

> however, those in accelerated or blast phase, should

> consider

> transplant as an option because drug therapy in this

> group of people

> doesn't seem to give durable responses.

>

> At this point, the telephone lines were opened and

> people were given

> a chance to ask questions.

>

> The first question was about surgeries and should

> patients take any

> precautions if they are planning for a surgery. He

> said that if

> there is a high risk of infection from the surgery,

> then it would be

> acceptable to stop taking Gleevec 1 week before the

> surgery to allow

> the white count to rise a bit (which will help if

> the patient gets an

> infection) but he said that for the majority of

> people on Gleevec,

> they manage surgeries the exact same way any normal

> person does.

>

> The second question was about resistance. He said

> that clinical

> decisions shouldn't be based on one test alone. It's

> the trend over

> time that matters. Especially with PCR's since they

> tend to bounce a

> lot. He said that if the PCR rises significantly on

> one test and

> then rises again on another, it should be watched

> closely.

> Resistance can usually be confirmed in about 6

> months time.

>

> The third question was about myelodysplasia. He said

> that

> myelodysplasia basically means " funny looking cells

> in the bone

> marrow " . He said that there are a significant number

> of Gleevec

> patients who appear to have " funny looking cells in

> their bone

> marrow " but that they don't really have

> myelodysplastic disease and

> the presence of these " funny cells " doesn't seem to

> have much

> significance.

>

> The fourth question was about survival expectations.

> He said that

> after 5 years, only 5% of patients have actually

> died of CML, another

> 5% have died of unrelated causes such as car

> accidents so he

> encouraged us all to look both ways before crossing

> the street

> because he thinks there's a good chance that we can

> all live out a

> normal life expectancy.

>

> The fifth question was about using Hydrea in

> treatment. He said some

> people still get Hydrea to start out if they have

> very high counts

> because it can reduce the counts quickly but Hydrea

> shouldn't be used

> long term as a means of controlling CML. Patients

> should either be

> on Gleevec or one of the other new drugs. If a

> patient is resistant

> to a current dose of Gleevec, there is no sense in

> continuing with

> that dose. It should be increased or changed for

> another drug.

>

> And the last question was about the various

> transcripts that the

> PCR's detect. He said most patients have only one

> transcript (ie

>

=== message truncated ===

____________________________________________________________________________

________

Need Mail bonding?

Go to the Q & A for great tips from Answers users.

http://answers./dir/?link=list & sid=396546091

[Guest guest]

Hi

Congratulations on the great response! I would tend to go with what

the experts say and that's to keep the intervals at 3 months. Dr.

Nimer said specifically even for those who have had a great response,

it's still very important to test every 3 months.

Take care,

Tracey