RE: Is it all Gleevec's fault?

[Guest guest]

I'm no brainiac , but I don't think it's irresponsible of a doctor to

take a patient off a drug because of side effects.  I quit the XL228 trial this

month because of side effects, and the drug was working well for me.  I do not

know anything about depression, but if it were me, I would most likely want to

try another drug.  It seems to me most of the ones on Tasigna like it a lot

better than Gleevec, so it may be worth a try for you.  Good luck,bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

 

From: Rosen Lum <rrosenlum@...>

Subject: [ ] Is it all Gleevec's fault?

Date: Sunday, February 22, 2009, 11:45 PM

Hey you brainiacs out there -- oh yes I do mean you Lottie, and you too Bobby!

: - )

Would it be irresponsible for an oncologist to take a patient off Gleevec and

onto, say, Tasigna, simply because the side effects became intolerable? Does

that present any dangers?

I am now having a really severe depression that strikes around mid-day and

suddenly dissipates around 6 or 7 p.m. The rest of the time I feel just fine. I

just can't tell you how awful these periods are, and anti-depressants (I

take 40 mg of Citalopram a day) do not appear to have any effect.

Thanks so much.

in S.F.

_________________________________________________________________

Windows Live™ Hotmail®:…more than just e-mail.

http://windowslive.com/explore?ocid=TXT_TAGLM_WL_t2_hm_justgotbetter_explore_022\

009

[Guest guest]

Hi ,

This is not an easy question to answer. Let me try, but I may have more

questions than answers.

First, have you confirmed that it is the Gleevec that is causing these bouts

of depression? This should be easy to do. Stop Gleevec for a week or two and

if the depression goes away then you have some evidence.

Dr. Drucker is someone who believes that a person's quality of life is more

important than a deeper response to any CML medication. So based on his

philosophy it is not irresposible to switch meds. Most doctors don't want to

switch meds if the current one is working fine. There is always the chance

thqat the new med comes with problems that are worse than the old one.

After listening to how you are suffering from this depression, I would say

that it is worth trying one of the other TKIs.

Zavie

Zavie (age 70)

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

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

[ ] Is it all Gleevec's fault?

Hey you brainiacs out there -- oh yes I do mean you Lottie, and you too

Bobby! : - )

Would it be irresponsible for an oncologist to take a patient off Gleevec

and onto, say, Tasigna, simply because the side effects became intolerable?

Does that present any dangers?

I am now having a really severe depression that strikes around mid-day and

suddenly dissipates around 6 or 7 p.m. The rest of the time I feel just

fine. I just can't tell you how awful these periods are, and

anti-depressants (I take 40 mg of Citalopram a day) do not appear to have

any effect.

Thanks so much.

in S.F.

_________________________________________________________________

Windows LiveT HotmailR:.more than just e-mail.

http://windowslive.com/explore?ocid=TXT_TAGLM_WL_t2_hm_justgotbetter_explore

_022009

[Guest guest]

I agree that it is not irresponsible to try another drug if the side

effects are more than you can bear. I had the depression with Gleeve

and since I am on gleevec vacation it has been wonderful not being in

that dark hole. While I am searching for a way to remain on Gleevec

because it is causing a problem with my HGB and increasing my Iron

Deficient Anemia. Because I do not chose to test the side effects of

the other drugs available. My ONC has told me of the successes of

some of his other patients with the other drugs, but when I presented

my resistance because of the side effects he simply said that if what

we were attempting failed they would be there for me. I agreed that

would be my choice when we thought the time was right. Good Luck

with your decision.

H.

dxd 2/03

400mg Gleevec 3/03

PCRU 11/03

Q-PCR undetectable 11/04

RT-PCR .014 11/05

RT-PCR .000 11/06

RT-PCR .001 11/07

Gleevec Vatation 11/07-1/08

Transfusions 12/07-5-08

RT-PCR 1/08 .017

Gleevec 400mg 1/08-6/08

Gleevec Vacation 6/08 - Unknown

Transfusion 8/08

Procrit 6/08 - 11/08

RT-PCR .001 10/08

RT-PCR .009 2/09

>

>

> Hey you brainiacs out there -- oh yes I do mean you Lottie, and you

too Bobby! : - )

>

> Would it be irresponsible for an oncologist to take a patient off

Gleevec and onto, say, Tasigna, simply because the side effects

became intolerable? Does that present any dangers?

>

> I am now having a really severe depression that strikes around mid-

day and suddenly dissipates around 6 or 7 p.m. The rest of the time I

feel just fine. I just can't tell you how awful these periods are,

and anti-depressants (I take 40 mg of Citalopram a day) do not appear

to have any effect.

>

> Thanks so much.

>

> in S.F.

>

>

>

> _________________________________________________________________

> Windows Live™ Hotmail®:…more than just e-mail.

> http://windowslive.com/explore?

ocid=TXT_TAGLM_WL_t2_hm_justgotbetter_explore_022009

>

>

[Guest guest]

Hi all this is my first communication.  I am 46 y/o and I just found out that I

have CML 3 weeks ago and it has been a real ride.  I travel for a living and I

am on a project in Alabama. Being away from home when this news hit was very

hard.  I live in Georgia and my employer is taking me off the road for a couple

months to let me work from home while I get my treatment under way.  I was on

Hydrea for two weeks to get my white blood count down from 78,000 to now

43,400.  The ONC wanted to have the WBC at 20,000 before starting me on Gleevec

however my RBC did not cooperate and started to fall.  I will tell you that this

is all very confusing to me and I am glad that I found this site.  I started on

the Gleevec on Saturday and do not see my ONC again for blood work until next

Monday.  I will be returning home the middle of March and will have to find a

new ONC.  Anyone know of a good one in Georgia.  Finding the right one is the

most important

thin to me right now as I am sure that you all understand.   

________________________________

From: dickie_64012 <dickie_64012@...>

Sent: Monday, February 23, 2009 11:30:51 PM

Subject: [ ] Re: Is it all Gleevec's fault?

I agree that it is not irresponsible to try another drug if the side

effects are more than you can bear. I had the depression with Gleeve

and since I am on gleevec vacation it has been wonderful not being in

that dark hole. While I am searching for a way to remain on Gleevec

because it is causing a problem with my HGB and increasing my Iron

Deficient Anemia. Because I do not chose to test the side effects of

the other drugs available. My ONC has told me of the successes of

some of his other patients with the other drugs, but when I presented

my resistance because of the side effects he simply said that if what

we were attempting failed they would be there for me. I agreed that

would be my choice when we thought the time was right. Good Luck

with your decision.

H.

dxd 2/03

400mg Gleevec 3/03

PCRU 11/03

Q-PCR undetectable 11/04

RT-PCR .014 11/05

RT-PCR .000 11/06

RT-PCR .001 11/07

Gleevec Vatation 11/07-1/08

Transfusions 12/07-5-08

RT-PCR 1/08 .017

Gleevec 400mg 1/08-6/08

Gleevec Vacation 6/08 - Unknown

Transfusion 8/08

Procrit 6/08 - 11/08

RT-PCR .001 10/08

RT-PCR .009 2/09

>

>

> Hey you brainiacs out there -- oh yes I do mean you Lottie, and you

too Bobby! : - )

>

> Would it be irresponsible for an oncologist to take a patient off

Gleevec and onto, say, Tasigna, simply because the side effects

became intolerable? Does that present any dangers?

>

> I am now having a really severe depression that strikes around mid-

day and suddenly dissipates around 6 or 7 p.m. The rest of the time I

feel just fine. I just can't tell you how awful these periods are,

and anti-depressants (I take 40 mg of Citalopram a day) do not appear

to have any effect.

>

> Thanks so much.

>

> in S.F.

>

>

>

> ____________ _________ _________ _________ _________ _________ _

> Windows Live™ Hotmail®:…more than just e-mail.

> http://windowslive. com/explore?

ocid=TXT_TAGLM_ WL_t2_hm_ justgotbetter_ explore_022009

>

>

[Guest guest]

Thank you, .

From: dickie_64012@...

Date: Tue, 24 Feb 2009 05:30:51 +0000

Subject: [ ] Re: Is it all Gleevec's fault?

I agree that it is not irresponsible to try another drug if the side

effects are more than you can bear. I had the depression with Gleeve

and since I am on gleevec vacation it has been wonderful not being in

that dark hole. While I am searching for a way to remain on Gleevec

because it is causing a problem with my HGB and increasing my Iron

Deficient Anemia. Because I do not chose to test the side effects of

the other drugs available. My ONC has told me of the successes of

some of his other patients with the other drugs, but when I presented

my resistance because of the side effects he simply said that if what

we were attempting failed they would be there for me. I agreed that

would be my choice when we thought the time was right. Good Luck

with your decision.

H.

dxd 2/03

400mg Gleevec 3/03

PCRU 11/03

Q-PCR undetectable 11/04

RT-PCR .014 11/05

RT-PCR .000 11/06

RT-PCR .001 11/07

Gleevec Vatation 11/07-1/08

Transfusions 12/07-5-08

RT-PCR 1/08 .017

Gleevec 400mg 1/08-6/08

Gleevec Vacation 6/08 - Unknown

Transfusion 8/08

Procrit 6/08 - 11/08

RT-PCR .001 10/08

RT-PCR .009 2/09

>

>

> Hey you brainiacs out there -- oh yes I do mean you Lottie, and you

too Bobby! : - )

>

> Would it be irresponsible for an oncologist to take a patient off

Gleevec and onto, say, Tasigna, simply because the side effects

became intolerable? Does that present any dangers?

>

> I am now having a really severe depression that strikes around mid-

day and suddenly dissipates around 6 or 7 p.m. The rest of the time I

feel just fine. I just can't tell you how awful these periods are,

and anti-depressants (I take 40 mg of Citalopram a day) do not appear

to have any effect.

>

> Thanks so much.

>

> in S.F.

>

>

>

> __________________________________________________________

> Windows Live™ Hotmail®:…more than just e-mail.

> http://windowslive.com/explore?

ocid=TXT_TAGLM_WL_t2_hm_justgotbetter_explore_022009

>

>

[Guest guest]

G'day ,

I am a classic example of why it is good to swap drugs. The usual reasons

the drugs are changed are due to lack of response and intolerance. I had

severe headaches and escalating migraines to the point where I would need to

have 3 days to recover from an attack and consequently my QOL and ability to

work were severely restricted, let alone all the other meds required to try

and stop the side effects. Even though Glivec was working wonderfully for

me, I couldn't tolerate anything more than 200mg which was a sub optimal

dose. My haem/t was reluctant to change over due to the great stats on

Glivec, but he also suffered from occasional migraine and his daughter would

have them regularly, so with a bit of pushing on my behalf an a request to

one of our leading CML specialists, I was able to swap.

Since I swapped to Tasigna, I have had no more headaches and feel great!

With depression - I wonder if there is also a correlation with lack of

Vitamin D? I know this has been discussed before, as my Vit D levels were

extremely low on Glivec and I take 5 tablets a day and it is summer in OZ at

the moment and I am getting lots of exposure. Deficiency in Vit D has been

shown to increase depression markedly and there have been studies done in

Sweden to demonstrate this.

Regards,

from Down Under

#1149 Zavies Zero Club

Dx: 25/07/07

Commenced Glivec 400mg 27/9/07

Changed to Tasigna 800mg 3/8/08

PCRs:

23/01/08 - 13.01 %

14/04/08 - 0.08 %

12/05/08 - 0.02% (Glivec 200mg)

06/08/08 - 0.09 % (commenced Tasigna)

30/09/08 - 0.18 %

19/12/08 - 0.00%

[ ] Is it all Gleevec's fault?

Hey you brainiacs out there -- oh yes I do mean you Lottie, and you too

Bobby! : - )

Would it be irresponsible for an oncologist to take a patient off Gleevec

and onto, say, Tasigna, simply because the side effects became intolerable?

Does that present any dangers?

I am now having a really severe depression that strikes around mid-day and

suddenly dissipates around 6 or 7 p.m. The rest of the time I feel just

fine. I just can't tell you how awful these periods are, and

anti-depressants (I take 40 mg of Citalopram a day) do not appear to have

any effect.

Thanks so much.

in S.F.

_________________________________________________________________

Windows LiveT HotmailR:.more than just e-mail.

http://windowslive.com/explore?ocid=TXT_TAGLM_WL_t2_hm_justgotbetter_explore

_022009

[Guest guest]

Where are you in Georgia?

Sent from my iPhone

On Feb 24, 2009, at 12:40 AM, Debbie Segers <segersdebbie@...>

wrote:

> Hi all this is my first communication. I am 46 y/o and I just found

> out that I have CML 3 weeks ago and it has been a real ride. I

> travel for a living and I am on a project in Alabama. Being away

> from home when this news hit was very hard. I live in Georgia and

> my employer is taking me off the road for a couple months to let me

> work from home while I get my treatment under way. I was on Hydrea

> for two weeks to get my white blood count down from 78,000 to now

> 43,400. The ONC wanted to have the WBC at 20,000 before starting me

> on Gleevec however my RBC did not cooperate and started to fall. I

> will tell you that this is all very confusing to me and I am glad

> that I found this site. I started on the Gleevec on Saturday and do

> not see my ONC again for blood work until next Monday. I will be

> returning home the middle of March and will have to find a new ONC.

> Anyone know of a good one in Georgia. Finding the right one is the

> most important

> thin to me right now as I am sure that you all understand.

>

>

>

>

> ________________________________

> From: dickie_64012 <dickie_64012@...>

>

> Sent: Monday, February 23, 2009 11:30:51 PM

> Subject: [ ] Re: Is it all Gleevec's fault?

>

>

> I agree that it is not irresponsible to try another drug if the side

> effects are more than you can bear. I had the depression with Gleeve

> and since I am on gleevec vacation it has been wonderful not being in

> that dark hole. While I am searching for a way to remain on Gleevec

> because it is causing a problem with my HGB and increasing my Iron

> Deficient Anemia. Because I do not chose to test the side effects of

> the other drugs available. My ONC has told me of the successes of

> some of his other patients with the other drugs, but when I presented

> my resistance because of the side effects he simply said that if what

> we were attempting failed they would be there for me. I agreed that

> would be my choice when we thought the time was right. Good Luck

> with your decision.

>

> H.

> dxd 2/03

> 400mg Gleevec 3/03

> PCRU 11/03

> Q-PCR undetectable 11/04

> RT-PCR .014 11/05

> RT-PCR .000 11/06

> RT-PCR .001 11/07

> Gleevec Vatation 11/07-1/08

> Transfusions 12/07-5-08

> RT-PCR 1/08 .017

> Gleevec 400mg 1/08-6/08

> Gleevec Vacation 6/08 - Unknown

> Transfusion 8/08

> Procrit 6/08 - 11/08

> RT-PCR .001 10/08

> RT-PCR .009 2/09

>

>

>>

>>

>> Hey you brainiacs out there -- oh yes I do mean you Lottie, and you

> too Bobby! : - )

>>

>> Would it be irresponsible for an oncologist to take a patient off

> Gleevec and onto, say, Tasigna, simply because the side effects

> became intolerable? Does that present any dangers?

>>

>> I am now having a really severe depression that strikes around mid-

> day and suddenly dissipates around 6 or 7 p.m. The rest of the time I

> feel just fine. I just can't tell you how awful these periods are,

> and anti-depressants (I take 40 mg of Citalopram a day) do not appear

> to have any effect.

>>

>> Thanks so much.

>>

>> in S.F.

>>

>>

>>

>> ____________ _________ _________ _________ _________ _________ _

>> Windows Live™ Hotmail®:…more than just e-mail.

>> http://windowslive. com/explore?

> ocid=TXT_TAGLM_ WL_t2_hm_ justgotbetter_ explore_022009

>>

>>

[Guest guest]

Hi Debbie.

I too, am a 46 y/o woman, and was diagnosed in May 2008. I live in Washington

State.   It was sure a rollercoaster ride for me, I can tell you that!  When I

was diagnosed, my WBC's were 350,000.  I was given Hydrea in the hospital for 3

days, which brought my WBC's down in the 100,000 range. My RBC's were so low,

that I had a blood transfusion.  I was given 4 bags of blood, and felt better

than I can remember feeling!   I started on 400mg. of Gleevec on the 4th day

and after being on it a week, it showed little improvement.  However, the

following week, it showed GREAT improvement. I keep improving and try to lead a

normal life.

There is alot to learn about our disease, and I have learned alot from this

group!  I've learned alot searching online, but there are also alot of

confusing and scary web pages out there.  I think this is the best place to

learn what you need to know.  Educating myself was the best way to rid myself

of so many fears and unknowns.

I hope someone can suggest a really good Oncologist for you. 

________________________________

From: Debbie Segers <segersdebbie@...>

Sent: Monday, February 23, 2009 9:40:33 PM

Subject: Re: [ ] Re: Is it all Gleevec's fault?

Hi all this is my first communication.  I am 46 y/o and I just found out that I

have CML 3 weeks ago and it has been a real ride.  I travel for a living and I

am on a project in Alabama. Being away from home when this news hit was very

hard.  I live in Georgia and my employer is taking me off the road for a couple

months to let me work from home while I get my treatment under way.  I was on

Hydrea for two weeks to get my white blood count down from 78,000 to now

43,400.  The ONC wanted to have the WBC at 20,000 before starting me on Gleevec

however my RBC did not cooperate and started to fall.  I will tell you that

this is all very confusing to me and I am glad that I found this site.  I

started on the Gleevec on Saturday and do not see my ONC again for blood work

until next Monday.  I will be returning home the middle of March and will have

to find a new ONC.  Anyone know of a good one in Georgia.  Finding the right

one is the most important

thin to me right now as I am sure that you all understand.   

________________________________

From: dickie_64012 <dickie_64012@...>

Sent: Monday, February 23, 2009 11:30:51 PM

Subject: [ ] Re: Is it all Gleevec's fault?

I agree that it is not irresponsible to try another drug if the side

effects are more than you can bear. I had the depression with Gleeve

and since I am on gleevec vacation it has been wonderful not being in

that dark hole. While I am searching for a way to remain on Gleevec

because it is causing a problem with my HGB and increasing my Iron

Deficient Anemia. Because I do not chose to test the side effects of

the other drugs available. My ONC has told me of the successes of

some of his other patients with the other drugs, but when I presented

my resistance because of the side effects he simply said that if what

we were attempting failed they would be there for me. I agreed that

would be my choice when we thought the time was right. Good Luck

with your decision.

H.

dxd 2/03

400mg Gleevec 3/03

PCRU 11/03

Q-PCR undetectable 11/04

RT-PCR .014 11/05

RT-PCR .000 11/06

RT-PCR .001 11/07

Gleevec Vatation 11/07-1/08

Transfusions 12/07-5-08

RT-PCR 1/08 .017

Gleevec 400mg 1/08-6/08

Gleevec Vacation 6/08 - Unknown

Transfusion 8/08

Procrit 6/08 - 11/08

RT-PCR .001 10/08

RT-PCR .009 2/09

>

>

> Hey you brainiacs out there -- oh yes I do mean you Lottie, and you

too Bobby! : - )

>

> Would it be irresponsible for an oncologist to take a patient off

Gleevec and onto, say, Tasigna, simply because the side effects

became intolerable? Does that present any dangers?

>

> I am now having a really severe depression that strikes around mid-

day and suddenly dissipates around 6 or 7 p.m. The rest of the time I

feel just fine. I just can't tell you how awful these periods are,

and anti-depressants (I take 40 mg of Citalopram a day) do not appear

to have any effect.

>

> Thanks so much.

>

> in S.F.

>

>

>

> ____________ _________ _________ _________ _________ _________ _

> Windows Live™ Hotmail®:…more than just e-mail.

> http://windowslive. com/explore?

ocid=TXT_TAGLM_ WL_t2_hm_ justgotbetter_ explore_022009

>

>

[Guest guest]

I am in North East Georgia however I will go as far as Atlanta.

________________________________

From: " mtmaynor@... " <mtmaynor@...>

" " < >

Sent: Tuesday, February 24, 2009 10:07:35 AM

Subject: Re: [ ] Re: Is it all Gleevec's fault?

Where are you in Georgia?

Sent from my iPhone

On Feb 24, 2009, at 12:40 AM, Debbie Segers <segersdebbie>

wrote:

> Hi all this is my first communication. I am 46 y/o and I just found

> out that I have CML 3 weeks ago and it has been a real ride. I

> travel for a living and I am on a project in Alabama. Being away

> from home when this news hit was very hard. I live in Georgia and

> my employer is taking me off the road for a couple months to let me

> work from home while I get my treatment under way. I was on Hydrea

> for two weeks to get my white blood count down from 78,000 to now

> 43,400. The ONC wanted to have the WBC at 20,000 before starting me

> on Gleevec however my RBC did not cooperate and started to fall. I

> will tell you that this is all very confusing to me and I am glad

> that I found this site. I started on the Gleevec on Saturday and do

> not see my ONC again for blood work until next Monday. I will be

> returning home the middle of March and will have to find a new ONC.

> Anyone know of a good one in Georgia. Finding the right one is the

> most important

> thin to me right now as I am sure that you all understand.

>

>

>

>

> ____________ _________ _________ __

> From: dickie_64012 <dickie_64012>

> groups (DOT) com

> Sent: Monday, February 23, 2009 11:30:51 PM

> Subject: [ ] Re: Is it all Gleevec's fault?

>

>

> I agree that it is not irresponsible to try another drug if the side

> effects are more than you can bear. I had the depression with Gleeve

> and since I am on gleevec vacation it has been wonderful not being in

> that dark hole. While I am searching for a way to remain on Gleevec

> because it is causing a problem with my HGB and increasing my Iron

> Deficient Anemia. Because I do not chose to test the side effects of

> the other drugs available. My ONC has told me of the successes of

> some of his other patients with the other drugs, but when I presented

> my resistance because of the side effects he simply said that if what

> we were attempting failed they would be there for me. I agreed that

> would be my choice when we thought the time was right. Good Luck

> with your decision.

>

> H.

> dxd 2/03

> 400mg Gleevec 3/03

> PCRU 11/03

> Q-PCR undetectable 11/04

> RT-PCR .014 11/05

> RT-PCR .000 11/06

> RT-PCR .001 11/07

> Gleevec Vatation 11/07-1/08

> Transfusions 12/07-5-08

> RT-PCR 1/08 .017

> Gleevec 400mg 1/08-6/08

> Gleevec Vacation 6/08 - Unknown

> Transfusion 8/08

> Procrit 6/08 - 11/08

> RT-PCR .001 10/08

> RT-PCR .009 2/09

>

>

>>

>>

>> Hey you brainiacs out there -- oh yes I do mean you Lottie, and you

> too Bobby! : - )

>>

>> Would it be irresponsible for an oncologist to take a patient off

> Gleevec and onto, say, Tasigna, simply because the side effects

> became intolerable? Does that present any dangers?

>>

>> I am now having a really severe depression that strikes around mid-

> day and suddenly dissipates around 6 or 7 p.m. The rest of the time I

> feel just fine. I just can't tell you how awful these periods are,

> and anti-depressants (I take 40 mg of Citalopram a day) do not appear

> to have any effect.

>>

>> Thanks so much.

>>

>> in S.F.

>>

>>

>>

>> ____________ _________ _________ _________ _________ _________ _

>> Windows Live™ Hotmail®:…more than just e-mail.

>> http://windowslive. com/explore?

> ocid=TXT_TAGLM_ WL_t2_hm_ justgotbetter_ explore_022009

>>

>>

[Guest guest]

>

[Guest guest]

Hi,

Welcome to our support group.

In the olden days (circa 2000) the doctors would start you on hydroxyurea to

bring your counts down and then start you on Gleevec. Today there are many

doctors who start you directly on Gleevec. Both approaches seem to work just

fine.

Sorry that you have to be here, but you have found the best CML support

group on the Internet. Don't hesitate to ask any questions.

Zavie

Zavie (age 70)

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

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

longing4sunnsand

Sent: February-25-09 5:54 PM

Subject: [ ] Re: Is it all Gleevec's fault?

>

[Guest guest]

>

> Hi,

>

> Welcome to our support group.

>

> In the olden days (circa 2000) the doctors would start you on

hydroxyurea to

> bring your counts down and then start you on Gleevec. Today there

are many

> doctors who start you directly on Gleevec. Both approaches seem to

work just

> fine.

>

> Sorry that you have to be here, but you have found the best CML support

> group on the Internet. Don't hesitate to ask any questions.

>

> Zavie

>

>

> Zavie (age 70)

> 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

> 3.6 log reduction Apr/08

> 3.6 log reduction Sep/08

> e-mail: zmiller@...

> Tel: 613-726-1117

> Tel: 561-429-3309 in Florida

> Fax: 309-296-0807

> Cell: 613-282-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> longing4sunnsand

> Sent: February-25-09 5:54 PM

>

> Subject: [ ] Re: Is it all Gleevec's fault?

>

>

>

> >

[Guest guest]

Hi all its me Debbie, I am a 46 year old female dx with CML in February 2009. 

It started with severe shooting pain in my neck and lower back and down my legs

to the point that I was unable to walk at all without pain medication.  The pain

consisted of shooting pain in my bones.  After several doctors visits including

a trip to the neurologist a pain management doctor took blood work and found the

following results.  I was on Hydrea for two weeks and have been on Gleevec for 4

days.

 

original blood stats:

 

CBC

 

WBC 78.60 last check was 43.40 (H)

RBC 3.79 (L) last check was lower however I do not know what it was (hydrea

dropped my WBC and RBC)

Hemoglobin 11.6 (L)

Hematocrit 33.8 (L)

platelet 298 NORMAL

RDW 17.0(H)

Neutrophils 87.2 (H)

Lymphocytes 6.5 (L)

monocytes normal 4.2

eosinophils normal 2.1

basophils normal 0.0

Inflammatory CRP 24.9 (H)

vitamin B12 4933 (H)no b12 supplements or injections

folate 5.4 (L)

ferritin 225.2 (H)

t3 26.9 (L)

sed rate 49 (H)

 

The Oncologist said that my biopsy was consistent with CML.  They were unable to

do an aspiration at two attempts they had a dry tap. The biopsy and attempted

aspirations were performed in my right hip.

 

I was on Hydrea for two weeks and have now been on Gleevec 400 mg for 4 day.  I

have been unable to work for two days because I feel like I have the worst case

of the flu that a person could have.  I am experiencing extreme bone and joint

pain.  I have been having this all along however it is worse now than before. 

my mouth is raw in places.  my back  and arms hurt the most although when I get

up to walk my hips hurt really bad.  I am currently taking Oxycodone 10 mg one

time a day for the pain.  I don't want to get hooked on the pain meds as I've

heard could happen so I've been trying to just deal with it most of the time.

 

Does all of this sound normal to you guys.  Are the side affect consistent and

can I expect them to get better..  Not being able to work is not a good thing. 

Can I accept the side effects to get better. 

________________________________

From: Zavie <zmiller@...>

Sent: Wednesday, February 25, 2009 10:46:57 PM

Subject: RE: [ ] Re: Is it all Gleevec's fault?

Hi,

Welcome to our support group.

In the olden days (circa 2000) the doctors would start you on hydroxyurea to

bring your counts down and then start you on Gleevec. Today there are many

doctors who start you directly on Gleevec. Both approaches seem to work just

fine.

Sorry that you have to be here, but you have found the best CML support

group on the Internet. Don't hesitate to ask any questions.

Zavie

Zavie (age 70)

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

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmillersympatico (DOT) ca

Tel: 613-726-1117

Tel: 561-429-3309 in Florida

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

longing4sunnsand

Sent: February-25- 09 5:54 PM

groups (DOT) com

Subject: [ ] Re: Is it all Gleevec's fault?

>

[Guest guest]

Debbie,

If the pain is that bad then take the pain meds as needed. Sometimes they

can switch what they give you and that can make a world of difference. When

I first started my little journey that had me on Tylenol 3's. All they did

were make me sick and sleepy, and really did nothing for the pain. I have

been on the same dosage of Loritabs for almost 3 years now and they are

still working. As long as they do I am keeping my dosage the same. I know

for myself personally being on Loritabs for so long have most likely made me

have an addiction but it is not by choice and that is what you need to

remember. Your not taking the meds to get a buzz, your taking them because

you need them.

Terry

On Thu, Feb 26, 2009 at 12:17 PM, Debbie Segers <segersdebbie@...>wrote:

> Hi all its me Debbie, I am a 46 year old female dx with CML in February

> 2009. It started with severe shooting pain in my neck and lower back and

> down my legs to the point that I was unable to walk at all without pain

> medication. The pain consisted of shooting pain in my bones. After several

> doctors visits including a trip to the neurologist a pain management doctor

> took blood work and found the following results. I was on Hydrea for two

> weeks and have been on Gleevec for 4 days.

>

> original blood stats:

>

> CBC

>

> WBC 78.60 last check was 43.40 (H)

> RBC 3.79 (L) last check was lower however I do not know what it was (hydrea

> dropped my WBC and RBC)

> Hemoglobin 11.6 (L)

> Hematocrit 33.8 (L)

> platelet 298 NORMAL

> RDW 17.0(H)

> Neutrophils 87.2 (H)

> Lymphocytes 6.5 (L)

> monocytes normal 4.2

> eosinophils normal 2.1

> basophils normal 0.0

> Inflammatory CRP 24.9 (H)

> vitamin B12 4933 (H)no b12 supplements or injections

> folate 5.4 (L)

> ferritin 225.2 (H)

> t3 26.9 (L)

> sed rate 49 (H)

>

> The Oncologist said that my biopsy was consistent with CML. They were

> unable to do an aspiration at two attempts they had a dry tap. The biopsy

> and attempted aspirations were performed in my right hip.

>

> I was on Hydrea for two weeks and have now been on Gleevec 400 mg for 4

> day. I have been unable to work for two days because I feel like I have the

> worst case of the flu that a person could have. I am experiencing extreme

> bone and joint pain. I have been having this all along however it is worse

> now than before. my mouth is raw in places. my back and arms hurt the

> most although when I get up to walk my hips hurt really bad. I am currently

> taking Oxycodone 10 mg one time a day for the pain. I don't want to get

> hooked on the pain meds as I've heard could happen so I've been trying to

> just deal with it most of the time.

>

> Does all of this sound normal to you guys. Are the side affect consistent

> and can I expect them to get better.. Not being able to work is not a good

> thing. Can I accept the side effects to get better.

>

> ________________________________

> From: Zavie <zmiller@... <zmiller%40sympatico.ca>>

> <%40>

> Sent: Wednesday, February 25, 2009 10:46:57 PM

> Subject: RE: [ ] Re: Is it all Gleevec's fault?

>

> Hi,

>

> Welcome to our support group.

>

> In the olden days (circa 2000) the doctors would start you on hydroxyurea

> to

> bring your counts down and then start you on Gleevec. Today there are many

> doctors who start you directly on Gleevec. Both approaches seem to work

> just

> fine.

>

> Sorry that you have to be here, but you have found the best CML support

> group on the Internet. Don't hesitate to ask any questions.

>

> Zavie

>

> Zavie (age 70)

> 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

> 3.6 log reduction Apr/08

> 3.6 log reduction Sep/08

> e-mail: zmillersympatico (DOT) ca

> Tel: 613-726-1117

> Tel: 561-429-3309 in Florida

> Fax: 309-296-0807

> Cell: 613-282-0204

> ID: zaviem

> YM: zaviemiller

> Skype: Zavie

>

> _____

>

> From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

> longing4sunnsand

> Sent: February-25- 09 5:54 PM

> groups (DOT) com

> Subject: [ ] Re: Is it all Gleevec's fault?

>

> >