RE: switching to sprycel??

[Guest guest]

Hi ,

It is time to see a CML specialist and get a second opinion. My suggestion

would be to see Dr. Moishe Talpaz in Ann Arbor.

In the meantime I would ask your doctor to redo the PCR test. A FISH result

of 2.5% is the same as a 0 %.

I don't understand why he increased your dose to 600 mg. You were already at

CCR. Did he want you to get to PCRU?

Zavie

Dr. Moishe Talpaz

Associate Chief, Division of Hem/Onc

Dept of Internal Medicine

Associate Director Cancer Center

Translational Research Program

Ann Arbor MI

734-764-8195

mtalpaz@...

Zavie (age 69)

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

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

jenniferabosse

Sent: June 19, 2007 9:47 PM

Subject: [ ] switching to sprycel??

I don't post often, but read all the posts. Here is my

predicament. I was diagnosed in May 2005 and started on 400mg of

gleevec. My first oncologist yo-yo'ed with my dose between 400mg

all the down to 100mg. Not knowing at the time what I know now, I

realize he shouldn't have done this and I switched dr.'s after about

5 months with him. It took me almost 2 years to reach FISH negative

(0%). I reached MCR (major cytogenic response) after 6 months, but

just could not reach that zero. My dr. increased my dose in 2/07 to

600mg hoping to push me into CCR. My FISH results in Feb. 2007 were

zero and pcr was 0.020. FISH (June '07) just came back at 2.5%

and pcr was up to .125%. Plus, since the increase, I have had

excessive swelling/fluid retention in my legs, ankles, abdomen.

Talked to the dr. yesterday and he wants to switch me to sprycel

because of the swelling and increase in pcr/fish. I am just

wondering if this is the right thing to do? I was hoping to get

more than 2 years out of gleevec. Any thoughts on this?

DX 5/05

600mg gleevec

[Guest guest]

Zavie,

I believe he increased my dose b/c it took me so long to reach CCR. My FISH

number had been bouncing between 1-7% for about 16 months before getting to

zero.

I have considered seeking out a second opinion, but I don't think insurance is

going to cover it and I really can't afford to pay out of pocket. My husband

was just diagnosed with colon cancer and is out of work now. I will still try

to look into it though!

I did ask if we could wait till my next appt. (august) and his reasoning for

the switch was because of the side effects I had been having and how they were

getting worse, plus the increase.

Zavie miller <zmiller@...> wrote:

Hi ,

It is time to see a CML specialist and get a second opinion. My suggestion

would be to see Dr. Moishe Talpaz in Ann Arbor.

In the meantime I would ask your doctor to redo the PCR test. A FISH result

of 2.5% is the same as a 0 %.

I don't understand why he increased your dose to 600 mg. You were already at

CCR. Did he want you to get to PCRU?

Zavie

Dr. Moishe Talpaz

Associate Chief, Division of Hem/Onc

Dept of Internal Medicine

Associate Director Cancer Center

Translational Research Program

Ann Arbor MI

734-764-8195

mtalpaz@...

Zavie (age 69)

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

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

jenniferabosse

Sent: June 19, 2007 9:47 PM

Subject: [ ] switching to sprycel??

I don't post often, but read all the posts. Here is my

predicament. I was diagnosed in May 2005 and started on 400mg of

gleevec. My first oncologist yo-yo'ed with my dose between 400mg

all the down to 100mg. Not knowing at the time what I know now, I

realize he shouldn't have done this and I switched dr.'s after about

5 months with him. It took me almost 2 years to reach FISH negative

(0%). I reached MCR (major cytogenic response) after 6 months, but

just could not reach that zero. My dr. increased my dose in 2/07 to

600mg hoping to push me into CCR. My FISH results in Feb. 2007 were

zero and pcr was 0.020. FISH (June '07) just came back at 2.5%

and pcr was up to .125%. Plus, since the increase, I have had

excessive swelling/fluid retention in my legs, ankles, abdomen.

Talked to the dr. yesterday and he wants to switch me to sprycel

because of the swelling and increase in pcr/fish. I am just

wondering if this is the right thing to do? I was hoping to get

more than 2 years out of gleevec. Any thoughts on this?

DX 5/05

600mg gleevec

[Guest guest]

Hi ,

The thing about the FISH test is that it always shows a false positive

value. So for the 16 months that it was bouncing you were probably at Zero

the entire time. Any CML specialist knows this. Once you hit CCR it can be a

slow process to get to MMR, but over time most patients get there.

I know what I am going to say is tough, but you have to do it. I believe

that you have been getting sub optimal treatment (I am being kind) and you

need to see a specialist. Beg, borrow, steal and come up with the money. You

will be useless to your sick husband if you are not well.

Check with the L & L Society and the American Cancer Society. They give money

for this type of testing.

In terms of waiting for August before switching, this is a question that the

CML specialist should answer. Not you or your current doctor.

Good luck. My prayers are with you.

Zavie

_____

From: [mailto: ] On Behalf Of

jennifer bosse

Sent: June 19, 2007 10:51 PM

Subject: RE: [ ] switching to sprycel??

Zavie,

I believe he increased my dose b/c it took me so long to reach CCR. My FISH

number had been bouncing between 1-7% for about 16 months before getting to

zero.

I have considered seeking out a second opinion, but I don't think insurance

is going to cover it and I really can't afford to pay out of pocket. My

husband was just diagnosed with colon cancer and is out of work now. I will

still try to look into it though!

I did ask if we could wait till my next appt. (august) and his reasoning for

the switch was because of the side effects I had been having and how they

were getting worse, plus the increase.

Zavie miller <zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca> wrote:

Hi ,

It is time to see a CML specialist and get a second opinion. My suggestion

would be to see Dr. Moishe Talpaz in Ann Arbor.

In the meantime I would ask your doctor to redo the PCR test. A FISH result

of 2.5% is the same as a 0 %.

I don't understand why he increased your dose to 600 mg. You were already at

CCR. Did he want you to get to PCRU?

Zavie

Dr. Moishe Talpaz

Associate Chief, Division of Hem/Onc

Dept of Internal Medicine

Associate Director Cancer Center

Translational Research Program

Ann Arbor MI

734-764-8195

mtalpazmed (DOT) <mailto:mtalpaz%40med.umich.edu> umich.edu

Zavie (age 69)

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

e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

jenniferabosse

Sent: June 19, 2007 9:47 PM

groups (DOT) <mailto:%40> com

Subject: [ ] switching to sprycel??

I don't post often, but read all the posts. Here is my

predicament. I was diagnosed in May 2005 and started on 400mg of

gleevec. My first oncologist yo-yo'ed with my dose between 400mg

all the down to 100mg. Not knowing at the time what I know now, I

realize he shouldn't have done this and I switched dr.'s after about

5 months with him. It took me almost 2 years to reach FISH negative

(0%). I reached MCR (major cytogenic response) after 6 months, but

just could not reach that zero. My dr. increased my dose in 2/07 to

600mg hoping to push me into CCR. My FISH results in Feb. 2007 were

zero and pcr was 0.020. FISH (June '07) just came back at 2.5%

and pcr was up to .125%. Plus, since the increase, I have had

excessive swelling/fluid retention in my legs, ankles, abdomen.

Talked to the dr. yesterday and he wants to switch me to sprycel

because of the swelling and increase in pcr/fish. I am just

wondering if this is the right thing to do? I was hoping to get

more than 2 years out of gleevec. Any thoughts on this?

DX 5/05

600mg gleevec