Re: [cml 2]

[Guest guest]

Eva, I was given Dilaudid when I went to the hospital with what I thought was my

gall bladder and it turned out that I have CML. When they gave me the shot, I

got real hot all over and my head felt very heavy BUT I had NO MORE PAIN for a

while!

From: Eva <evaob365@...>

Subject: [ ]

" " < >

Date: Sunday, June 14, 2009, 10:39 PM

I was wondering if anyone had any experience with Dilaudid 1 mg and Haloperidol

0.5 mg. I was prescribed the first one for pain and the other one for nausea. I

am not on any chemo right now when I went back on Gleevec 400 mg on May 27 my

liver was fine but when I went back on June the 10th my liver enzymes were up to

almost 300 so I am not on anything right now but I am having a lot of muscle

pain and throbbing bone pain. My onc says it is the CML but my WBC count is

still in the normal range. The printed material I was given with these meds was

quite extensive but also very scary . The pharmacist said not to take all the

warnings to heart ... they just have to tell me all this scary stuff. If anyone

has any experience with these drugs I would love to hear about their

experiences. Thanks and God Bless.

Eva

[Guest guest]

Thank you I was worried that I had paid for these pills but was going to

be too scared to take them. LOL

Eva XXOO

From:

Sent: Sunday, June 14, 2009 10:44 PM

Subject: Re: [ ]

Eva, I was given Dilaudid when I went to the hospital with what I thought was my

gall bladder and it turned out that I have CML. When they gave me the shot, I

got real hot all over and my head felt very heavy BUT I had NO MORE PAIN for a

while!

From: Eva <evaob365@...>

Subject: [ ]

" " < >

Date: Sunday, June 14, 2009, 10:39 PM

I was wondering if anyone had any experience with Dilaudid 1 mg and Haloperidol

0.5 mg. I was prescribed the first one for pain and the other one for nausea. I

am not on any chemo right now when I went back on Gleevec 400 mg on May 27 my

liver was fine but when I went back on June the 10th my liver enzymes were up to

almost 300 so I am not on anything right now but I am having a lot of muscle

pain and throbbing bone pain. My onc says it is the CML but my WBC count is

still in the normal range. The printed material I was given with these meds was

quite extensive but also very scary . The pharmacist said not to take all the

warnings to heart ... they just have to tell me all this scary stuff. If anyone

has any experience with these drugs I would love to hear about their

experiences. Thanks and God Bless.

Eva

[Guest guest]

IF YOU ARE NOT COMFORTABLE WITH NOVEMBER YOU GO SOONER!!!!

The first time my onc/hemo wanted me to wait a month for my next appointment I

almost cried.  I told him I wasn't ok with that.  He looked at me like I was

nuts and then said I could have my blood drawn every week and then see him in a

month.  We moved slowly!!!

IT IS ALLL ABOUT YOU!!!!!!!!!!

Love and Blessings

Jo-Dee

From: Eva <evaob365@...>

Subject: [ ]

" " < >

Date: Friday, August 7, 2009, 8:01 PM

 

Hi gang, I have been on Sprycel for a week now and I just had

a doc appt. yesterday. My wbc has come up from the normal range to 20,000. My

liver is finally back down to 46 ...My ast that is. The fool I had to see

because my onc is on maternity leave said I have no need to see him until the

26th of November. That seems a little far away to me. Just wanted the groups

advice.

Thanks Take care ; Eva

[Guest guest]

Hi Jo-Dee,

I would insist in having a WBC weekly for at least a month and then

bi-weekly if it returns to normal.

If he wants to know why, tell him that you and all your CML friends are

worried.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of Jo-Dee

McKibben

Sent: August 7, 2009 4:23 PM

Subject: Re: [ ]

IF YOU ARE NOT COMFORTABLE WITH NOVEMBER YOU GO SOONER!!!!

The first time my onc/hemo wanted me to wait a month for my next appointment

I almost cried. I told him I wasn't ok with that. He looked at me like I

was nuts and then said I could have my blood drawn every week and then see

him in a month. We moved slowly!!!

IT IS ALLL ABOUT YOU!!!!!!!!!!

Love and Blessings

Jo-Dee

From: Eva <evaob365hotmail (DOT) <mailto:evaob365%40hotmail.com> com>

Subject: [ ]

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

Date: Friday, August 7, 2009, 8:01 PM

Hi gang, I have been on Sprycel for a week now and I just had a doc appt.

yesterday. My wbc has come up from the normal range to 20,000. My liver is

finally back down to 46 ...My ast that is. The fool I had to see because my

onc is on maternity leave said I have no need to see him until the 26th of

November. That seems a little far away to me. Just wanted the groups advice.

Thanks Take care ; Eva

[Guest guest]

I started on sprycel two weeks ago and my leukemia specialist said he wants to

see me every two weeks for awhile. The genetic test will be in two months.

Sent from my iPhone

On Aug 7, 2009, at 4:48 PM, " Zavie " <zmiller@...> wrote:

Hi Jo-Dee,

I would insist in having a WBC weekly for at least a month and then

bi-weekly if it returns to normal.

If he wants to know why, tell him that you and all your CML friends are

worried.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of Jo-Dee

McKibben

Sent: August 7, 2009 4:23 PM

Subject: Re: [ ]

IF YOU ARE NOT COMFORTABLE WITH NOVEMBER YOU GO SOONER!!!!

The first time my onc/hemo wanted me to wait a month for my next appointment

I almost cried. I told him I wasn't ok with that. He looked at me like I

was nuts and then said I could have my blood drawn every week and then see

him in a month. We moved slowly!!!

IT IS ALLL ABOUT YOU!!!!!!!!!!

Love and Blessings

Jo-Dee

From: Eva <evaob365hotmail (DOT) <mailto:evaob365%40hotmail.com> com>

Subject: [ ]

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

Date: Friday, August 7, 2009, 8:01 PM

Hi gang, I have been on Sprycel for a week now and I just had a doc appt.

yesterday. My wbc has come up from the normal range to 20,000. My liver is

finally back down to 46 ...My ast that is. The fool I had to see because my

onc is on maternity leave said I have no need to see him until the 26th of

November. That seems a little far away to me. Just wanted the groups advice.

Thanks Take care ; Eva

[Guest guest]

Wrong!!! You should be being watched a lot closer when first starting..like

every week!!!

Sharon T

_____

From: [mailto: ] On Behalf Of Eva

Sent: Friday, August 07, 2009 1:02 PM

Subject: [ ]

Hi gang, I have been on Sprycel for a week now and I just had a doc appt.

yesterday. My wbc has come up from the normal range to 20,000. My liver is

finally back down to 46 ...My ast that is. The fool I had to see because my

onc is on maternity leave said I have no need to see him until the 26th of

November. That seems a little far away to me. Just wanted the groups advice.

Thanks Take care ; Eva

[Guest guest]

Beverly,

I switches to Sprycel 10 days ago.I saw my Dr. yesterday..All is well for

now..Wants to hae bi weekly labs,visit again in 1 month and retest PCR in 2 more

months to see where we are at..So far I seem to not have as many issues as I had

with Gleevec..I hope it continues..Any idea how long it takes for Gleevec to get

out of the system and the Sprycel to start kicking in as far as side effects go?

How are you doing with the Sprycel? Did you take Gleevec first?

Hope everyone has a great weekend..

Thanks

SharonS

In , Beverly Blair <bbobblair@...> wrote:

>

> I started on sprycel two weeks ago and my leukemia specialist said he wants to

see me every two weeks for awhile. The genetic test will be in two months.

>

> Sent from my iPhone

[Guest guest]

Sharon S

Don't wait for them (side effects) they may not come. Think positive!

Good luck

Sharon T

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: Friday, August 07, 2009 8:42 PM

Subject: Re: [ ]

Beverly,

I switches to Sprycel 10 days ago.I saw my Dr. yesterday..All is well for

now..Wants to hae bi weekly labs,visit again in 1 month and retest PCR in 2

more months to see where we are at..So far I seem to not have as many issues

as I had with Gleevec..I hope it continues..Any idea how long it takes for

Gleevec to get out of the system and the Sprycel to start kicking in as far

as side effects go?

How are you doing with the Sprycel? Did you take Gleevec first?

Hope everyone has a great weekend..

Thanks

SharonS

In groups (DOT) <mailto:%40> com, Beverly Blair

<bbobblair@...> wrote:

>

> I started on sprycel two weeks ago and my leukemia specialist said he

wants to see me every two weeks for awhile. The genetic test will be in two

months.

>

> Sent from my iPhone

[Guest guest]

Sharon,

I sure hope you are correct..I hope..I had so many issues with Gleevec it

almost seems unreal to be on sprycel and not have all those issues..Night and

day difference..Hope I am able to remain at a 4 log reduction as well..I feel so

much better already after just 10 days.I was wondering how long the gleevec will

stick around? Maybe it is all out of my system and that is why I am feeling

better or maybe it isn't all out yet and I may start to even feel

wonderful..lol..Wouldn't that be great..I don't have nearly as much fatigue so

far.I am going to think positive here and hope it only gets better..I am off to

a good start for sure..Thanks for the encouragment..Have a great weekend..

SharonS

In , " Sharon Teichera " <onthewtr@...> wrote:

>

> Sharon S

>

>

>

> Don't wait for them (side effects) they may not come. Think positive!

>

> Good luck

>

> Sharon T

>

[Guest guest]

I missed some posts Sharon -did you go off Gleevec basically because of the

side effects? It sounds like it worked the other way and got you to PCRU

with a 4 log reduction. That is great.

I did really well on Sprycell for 3 years. Then on to Tasigna and Tasigna is

even better then Sprycel.

I can honestly say I am back to my normal self.

I think Gleevec stays around for about two or three weeks. They had me wait

two or three weeks before going on to Sprycel. And then when I got of

Sprycell they actually waited 4 or 5 weeks and I went up to 0.075% I was so

upset but then within two months on Tasigna I was at 0% PCRU. So you will be

fine.

Keep me posted on how you feel.

Sharon T

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: Friday, August 07, 2009 8:55 PM

Subject: Re: [ ]

Sharon,

I sure hope you are correct..I hope..I had so many issues with Gleevec it

almost seems unreal to be on sprycel and not have all those issues..Night

and day difference..Hope I am able to remain at a 4 log reduction as well..I

feel so much better already after just 10 days.I was wondering how long the

gleevec will stick around? Maybe it is all out of my system and that is why

I am feeling better or maybe it isn't all out yet and I may start to even

feel wonderful..lol..Wouldn't that be great..I don't have nearly as much

fatigue so far.I am going to think positive here and hope it only gets

better..I am off to a good start for sure..Thanks for the encouragment..Have

a great weekend..

SharonS

In groups (DOT) <mailto:%40> com, " Sharon Teichera "

<onthewtr@...> wrote:

>

> Sharon S

>

>

>

> Don't wait for them (side effects) they may not come. Think positive!

>

> Good luck

>

> Sharon T

>

[Guest guest]

I was on gleevec for almost nine years. My numbers started going up and it had

stopped working. A bmb showed a mutation. I agree that sprycel seems easier but

I thanked God for gleevec-I started when it was Sti571. Bev

Sent from my iPhone

On Aug 7, 2009, at 11:42 PM, " serenitywon " <serenitywon@...> wrote:

Beverly,

I switches to Sprycel 10 days ago.I saw my Dr. yesterday..All is well for

now..Wants to hae bi weekly labs,visit again in 1 month and retest PCR in 2 more

months to see where we are at..So far I seem to not have as many issues as I had

with Gleevec..I hope it continues..Any idea how long it takes for Gleevec to get

out of the system and the Sprycel to start kicking in as far as side effects go?

How are you doing with the Sprycel? Did you take Gleevec first?

Hope everyone has a great weekend..

Thanks

SharonS

In , Beverly Blair <bbobblair@...> wrote:

>

> I started on sprycel two weeks ago and my leukemia specialist said he wants to

see me every two weeks for awhile. The genetic test will be in two months.

>

> Sent from my iPhone

[Guest guest]

Your dr seems to be following the same treatment protocol as mine

Sent from my iPhone

On Aug 7, 2009, at 11:42 PM, " serenitywon " <serenitywon@...> wrote:

Beverly,

I switches to Sprycel 10 days ago.I saw my Dr. yesterday..All is well for

now..Wants to hae bi weekly labs,visit again in 1 month and retest PCR in 2 more

months to see where we are at..So far I seem to not have as many issues as I had

with Gleevec..I hope it continues..Any idea how long it takes for Gleevec to get

out of the system and the Sprycel to start kicking in as far as side effects go?

How are you doing with the Sprycel? Did you take Gleevec first?

Hope everyone has a great weekend..

Thanks

SharonS

In , Beverly Blair <bbobblair@...> wrote:

>

> I started on sprycel two weeks ago and my leukemia specialist said he wants to

see me every two weeks for awhile. The genetic test will be in two months.

>

> Sent from my iPhone

[Guest guest]

Sharon,

I went off Gleevec for a couple reasons..I did have alot of side effects and

the dose was 400mg to 600 mg then back to 400 due to side effects.I was not

keeping the same level of remission as the dose was lowered.I wanted to see if

the side effects would be fewer with something else..I felt miserable all the

time..Dr. said if I remained on Gleevec I had to go to 800 mg and I couldn't

even handle the 600 mg that I had been on..So off that and onto Sprycel..

On Sprycel I have not had as much fatigue.I started it on the 27th of July.I

stopped Gleevec the day before..No waiting period between the two..I have been

doing good..Yesterday and today I have had severe pain in my shin®.Not sure

why.I have a headache today and not sure why either..Never get headaches with

the exception of before I was dx. I was having headaches and trying to find out

why as I never get them and I was dx with CML.

Glad to hear you are doing so well with Tasigna and have your life back..I am

hoping for the same..

Thanks

SharonS

- In , " Sharon Teichera " <onthewtr@...> wrote:

>

> I missed some posts Sharon -did you go off Gleevec basically because of the

> side effects? It sounds like it worked the other way and got you to PCRU

> with a 4 log reduction. That is great.

>

> I did really well on Sprycell for 3 years. Then on to Tasigna and Tasigna is

> even better then Sprycel.

>

> I can honestly say I am back to my normal self.

>

> I think Gleevec stays around for about two or three weeks. They had me wait

> two or three weeks before going on to Sprycel. And then when I got of

> Sprycell they actually waited 4 or 5 weeks and I went up to 0.075% I was so

> upset but then within two months on Tasigna I was at 0% PCRU. So you will be

> fine.

>

> Keep me posted on how you feel.

>

> Sharon T

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> serenitywon

> Sent: Friday, August 07, 2009 8:55 PM

>

> Subject: Re: [ ]

>

>

>

>

>

> Sharon,

> I sure hope you are correct..I hope..I had so many issues with Gleevec it

> almost seems unreal to be on sprycel and not have all those issues..Night

> and day difference..Hope I am able to remain at a 4 log reduction as well..I

> feel so much better already after just 10 days.I was wondering how long the

> gleevec will stick around? Maybe it is all out of my system and that is why

> I am feeling better or maybe it isn't all out yet and I may start to even

> feel wonderful..lol..Wouldn't that be great..I don't have nearly as much

> fatigue so far.I am going to think positive here and hope it only gets

> better..I am off to a good start for sure..Thanks for the encouragment..Have

> a great weekend..

> SharonS

>

> In groups (DOT) <mailto:%40> com, " Sharon Teichera "

> <onthewtr@> wrote:

> >

> > Sharon S

> >

> >

> >

> > Don't wait for them (side effects) they may not come. Think positive!

> >

> > Good luck

> >

> > Sharon T

> >

>

>

>

>

>

>

[Guest guest]

Bev,

You were definately on Gleevec a long time..Hope you are doing well with the

Sprycel..Take care

SharonS

In , Beverly Blair <bbobblair@...> wrote:

>

> I was on gleevec for almost nine years. My numbers started going up and it had

stopped working. A bmb showed a mutation. I agree that sprycel seems easier but

I thanked God for gleevec-I started when it was Sti571. Bev

>

> Sent from my iPhone

[Guest guest]

SharonS,

I'm sorry about your  headaches.  I'm not a person who gets them, and that was

the original reason why I went to my GP.  I told him that I was getting

headaches often, had a ringing in my ears that was almost constant when I was

laying flat, and that I'd been tired alot.  He thought I had a virus since I had

a cough as well.  That was when I should have insisted he do blood work on me. 

I was in and out of his office 3 times before blood work was ever ordered. 

My question is what side effects do most people experience with Sprycel?

Hope your headaches go away!

________________________________

From: serenitywon <serenitywon@...>

Sent: Saturday, August 8, 2009 8:11:20 PM

Subject: Re: [ ]

 

Sharon,

I went off Gleevec for a couple reasons..I did have alot of side effects and the

dose was 400mg to 600 mg then back to 400 due to side effects.I was not keeping

the same level of remission as the dose was lowered.I wanted to see if the side

effects would be fewer with something else..I felt miserable all the time..Dr.

said if I remained on Gleevec I had to go to 800 mg and I couldn't even handle

the 600 mg that I had been on..So off that and onto Sprycel..

On Sprycel I have not had as much fatigue.I started it on the 27th of July.I

stopped Gleevec the day before..No waiting period between the two..I have been

doing good..Yesterday and today I have had severe pain in my shin®.Not sure

why.I have a headache today and not sure why either..Never get headaches with

the exception of before I was dx. I was having headaches and trying to find out

why as I never get them and I was dx with CML.

Glad to hear you are doing so well with Tasigna and have your life back..I am

hoping for the same..

Thanks

SharonS

- In groups (DOT) com, " Sharon Teichera " <onthewtr@.. .> wrote:

>

> I missed some posts Sharon -did you go off Gleevec basically because of the

> side effects? It sounds like it worked the other way and got you to PCRU

> with a 4 log reduction. That is great.

>

> I did really well on Sprycell for 3 years. Then on to Tasigna and Tasigna is

> even better then Sprycel.

>

> I can honestly say I am back to my normal self.

>

> I think Gleevec stays around for about two or three weeks. They had me wait

> two or three weeks before going on to Sprycel. And then when I got of

> Sprycell they actually waited 4 or 5 weeks and I went up to 0.075% I was so

> upset but then within two months on Tasigna I was at 0% PCRU. So you will be

> fine.

>

> Keep me posted on how you feel.

>

> Sharon T

>

>

>

> _____

>

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

> serenitywon

> Sent: Friday, August 07, 2009 8:55 PM

> groups (DOT) com

> Subject: Re: [ ]

>

>

>

>

>

> Sharon,

> I sure hope you are correct..I hope..I had so many issues with Gleevec it

> almost seems unreal to be on sprycel and not have all those issues..Night

> and day difference.. Hope I am able to remain at a 4 log reduction as well..I

> feel so much better already after just 10 days.I was wondering how long the

> gleevec will stick around? Maybe it is all out of my system and that is why

> I am feeling better or maybe it isn't all out yet and I may start to even

> feel wonderful..lol. ..Wouldn't that be great..I don't have nearly as much

> fatigue so far.I am going to think positive here and hope it only gets

> better..I am off to a good start for sure..Thanks for the encouragment. .Have

> a great weekend..

> SharonS

>

> In groups (DOT) <mailto:% 40groups. com> com, " Sharon Teichera "

> <onthewtr@> wrote:

> >

> > Sharon S

> >

> >

> >

> > Don't wait for them (side effects) they may not come. Think positive!

> >

> > Good luck

> >

> > Sharon T

> >

>

>

>

>

>

>

[Guest guest]

Hi , I only had headaches for about two weeks, and for the next year and a

half it was wonderful.  No side effects at all, and in 10 months I reached CCR. 

I was on 70mg a day, in the beginning of the trial.  But the honeymoon didn't

last, after 1 1/2 yrs I got pleural effusion.And that would not have been as bad

as it got, but I went to the hospital because I was having a hard time

breathing, and they misdiagnosed me with pneumonia.  Had I called Dr. Talpaz in

the beginning, he would have known, but the er and my gp did not listen when I

told them pleural effusion was a known side effects, they said it was pneumonia.

So by the time they realized it wasn't what they said it was, my lungs were so

full of fluid I had to have a thoracentesis done, and they removed 1 1/2 liters

of fluid, and Dr. Talpaz took me off Sprycel, and loaded me up with prednisone. 

My point being, if you start to get short of breath, TELL YOUR ONC. 

And I don't understand doctors that do not always do bloodwork, especially if

you tell them you are tired,.  My cml was detected during an annual physical,

the wbc was 25,000 and my gp knew right away it could be cml and sent me to the

cancer center.  That was 14 years ago, and I'm still alive and kicking!!  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

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

> >

> > Sharon S

> >

> >

> >

> > Don't wait for them (side effects) they may not come. Think positive!

> >

> > Good luck

> >

> > Sharon T

> >

>

>

>

>

>

>

[Guest guest]

,

I'm not real sure about the side effects of Sprycel..I have just started it..I

hope others who have experience with this will chime in here.I am curious as

well..I am thinking positive that I will not experience any side effects..Hope

you are well and we can get some replys regarding your question..

Thanks and take care

SharonS

In , Lomsdalen <llomsdalen@...> wrote:

>

> SharonS,

> I'm sorry about your  headaches.  I'm not a person who gets them, and that was

the original reason why I went to my GP.  I told him that I was getting

headaches often, had a ringing in my ears that was almost constant when I was

laying flat, and that I'd been tired alot.  He thought I had a virus since I had

a cough as well.  That was when I should have insisted he do blood work on me. 

I was in and out of his office 3 times before blood work was ever ordered. 

>

> My question is what side effects do most people experience with Sprycel?

>

> Hope your headaches go away!

>

>

>

>

>

> ________________________________

> From: serenitywon <serenitywon@...>

>

> Sent: Saturday, August 8, 2009 8:11:20 PM

> Subject: Re: [ ]

>

>  

> Sharon,

> I went off Gleevec for a couple reasons..I did have alot of side effects and

the dose was 400mg to 600 mg then back to 400 due to side effects.I was not

keeping the same level of remission as the dose was lowered.I wanted to see if

the side effects would be fewer with something else..I felt miserable all the

time..Dr. said if I remained on Gleevec I had to go to 800 mg and I couldn't

even handle the 600 mg that I had been on..So off that and onto Sprycel..

>

> On Sprycel I have not had as much fatigue.I started it on the 27th of July.I

stopped Gleevec the day before..No waiting period between the two..I have been

doing good..Yesterday and today I have had severe pain in my shin®.Not sure

why.I have a headache today and not sure why either..Never get headaches with

the exception of before I was dx. I was having headaches and trying to find out

why as I never get them and I was dx with CML.

>

> Glad to hear you are doing so well with Tasigna and have your life back..I am

hoping for the same..

> Thanks

> SharonS

>

> - In groups (DOT) com, " Sharon Teichera " <onthewtr@ .> wrote:

> >

> > I missed some posts Sharon -did you go off Gleevec basically because of the

> > side effects? It sounds like it worked the other way and got you to PCRU

> > with a 4 log reduction. That is great.

> >

> > I did really well on Sprycell for 3 years. Then on to Tasigna and Tasigna is

> > even better then Sprycel.

> >

> > I can honestly say I am back to my normal self.

> >

> > I think Gleevec stays around for about two or three weeks. They had me wait

> > two or three weeks before going on to Sprycel. And then when I got of

> > Sprycell they actually waited 4 or 5 weeks and I went up to 0.075% I was so

> > upset but then within two months on Tasigna I was at 0% PCRU. So you will be

> > fine.

> >

> > Keep me posted on how you feel.

> >

> > Sharon T

> >

> >

> >

> > _____

> >

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

> > serenitywon

> > Sent: Friday, August 07, 2009 8:55 PM

> > groups (DOT) com

> > Subject: Re: [ ]

> >

> >

> >

> >

> >

> > Sharon,

> > I sure hope you are correct..I hope..I had so many issues with Gleevec it

> > almost seems unreal to be on sprycel and not have all those issues..Night

> > and day difference.. Hope I am able to remain at a 4 log reduction as

well..I

> > feel so much better already after just 10 days.I was wondering how long the

> > gleevec will stick around? Maybe it is all out of my system and that is why

> > I am feeling better or maybe it isn't all out yet and I may start to even

> > feel wonderful..lol. ..Wouldn't that be great..I don't have nearly as much

> > fatigue so far.I am going to think positive here and hope it only gets

> > better..I am off to a good start for sure..Thanks for the encouragment.

..Have

> > a great weekend..

> > SharonS

> >

> > In groups (DOT) <mailto:% 40groups. com> com, " Sharon

Teichera "

> > <onthewtr@> wrote:

> > >

> > > Sharon S

> > >

> > >

> > >

> > > Don't wait for them (side effects) they may not come. Think positive!

> > >

> > > Good luck

> > >

> > > Sharon T

> > >

> >

> >

> >

> >

> >

> >

[Guest guest]

Bobby,

I started Sprycel on July 27,09.I just started to get the headaches and I

have been on it 2 weeks now..I took no break between Gleevec and Sprycel.Do you

think maybe the Gleevec is out of my system now and the Sprycel is kicking in?I

have also started having shin pain in my right shin.Not sure if any of my issues

are med related as I have been much busier than usual with helping my son move.I

don't feel as fatigued thus far but am having a hard time waking in the morning

but fine after I get up and moving..I will keep an eye out for the plueral

effusion..Thanks for your help..Hope you are having a great weekend..

SharonS

In , ROBERTA DOYLE <rcd1929@...> wrote:

>

> Hi , I only had headaches for about two weeks, and for the next year and a

half it was wonderful.  No side effects at all, and in 10 months I reached CCR. 

I was on 70mg a day, in the beginning of the trial.  But the honeymoon didn't

last, after 1 1/2 yrs I got pleural effusion.And that would not have been as bad

as it got, but I went to the hospital because I was having a hard time

breathing, and they misdiagnosed me with pneumonia.  Had I called Dr. Talpaz in

the beginning, he would have known, but the er and my gp did not listen when I

told them pleural effusion was a known side effects, they said it was pneumonia.

So by the time they realized it wasn't what they said it was, my lungs were so

full of fluid I had to have a thoracentesis done, and they removed 1 1/2 liters

of fluid, and Dr. Talpaz took me off Sprycel, and loaded me up with prednisone. 

My point being, if you start to get short of breath, TELL YOUR ONC. 

> And I don't understand doctors that do not always do bloodwork, especially if

you tell them you are tired,.  My cml was detected during an annual physical,

the wbc was 25,000 and my gp knew right away it could be cml and sent me to the

cancer center.  That was 14 years ago, and I'm still alive and kicking!!  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

> 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

>

[Guest guest]

Somewhat groggy much of the time, but nowhere near like with Gleevec, which for

me was like taking some kind of heavy narcotic. And loose bowels!

From: serenitywon@...

Date: Sun, 9 Aug 2009 19:13:54 +0000

Subject: Re: [ ]

,

I'm not real sure about the side effects of Sprycel..I have just started it..I

hope others who have experience with this will chime in here.I am curious as

well..I am thinking positive that I will not experience any side effects..Hope

you are well and we can get some replys regarding your question..

Thanks and take care

SharonS

In , Lomsdalen <llomsdalen@...> wrote:

>

> SharonS,

> I'm sorry about your headaches. I'm not a person who gets them, and that was

the original reason why I went to my GP. I told him that I was getting

headaches often, had a ringing in my ears that was almost constant when I was

laying flat, and that I'd been tired alot. He thought I had a virus since I had

a cough as well. That was when I should have insisted he do blood work on me.

I was in and out of his office 3 times before blood work was ever ordered.

>

> My question is what side effects do most people experience with Sprycel?

>

> Hope your headaches go away!

>

>

>

>

>

> ________________________________

> From: serenitywon <serenitywon@...>

>

> Sent: Saturday, August 8, 2009 8:11:20 PM

> Subject: Re: [ ]

>

>

> Sharon,

> I went off Gleevec for a couple reasons..I did have alot of side effects and

the dose was 400mg to 600 mg then back to 400 due to side effects.I was not

keeping the same level of remission as the dose was lowered.I wanted to see if

the side effects would be fewer with something else..I felt miserable all the

time..Dr. said if I remained on Gleevec I had to go to 800 mg and I couldn't

even handle the 600 mg that I had been on..So off that and onto Sprycel..

>

> On Sprycel I have not had as much fatigue.I started it on the 27th of July.I

stopped Gleevec the day before..No waiting period between the two..I have been

doing good..Yesterday and today I have had severe pain in my shin®.Not sure

why.I have a headache today and not sure why either..Never get headaches with

the exception of before I was dx. I was having headaches and trying to find out

why as I never get them and I was dx with CML.

>

> Glad to hear you are doing so well with Tasigna and have your life back..I am

hoping for the same..

> Thanks

> SharonS

>

> - In groups (DOT) com, " Sharon Teichera " <onthewtr@ .> wrote:

> >

> > I missed some posts Sharon -did you go off Gleevec basically because of the

> > side effects? It sounds like it worked the other way and got you to PCRU

> > with a 4 log reduction. That is great.

> >

> > I did really well on Sprycell for 3 years. Then on to Tasigna and Tasigna is

> > even better then Sprycel.

> >

> > I can honestly say I am back to my normal self.

> >

> > I think Gleevec stays around for about two or three weeks. They had me wait

> > two or three weeks before going on to Sprycel. And then when I got of

> > Sprycell they actually waited 4 or 5 weeks and I went up to 0.075% I was so

> > upset but then within two months on Tasigna I was at 0% PCRU. So you will be

> > fine.

> >

> > Keep me posted on how you feel.

> >

> > Sharon T

> >

> >

> >

> > _____

> >

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

> > serenitywon

> > Sent: Friday, August 07, 2009 8:55 PM

> > groups (DOT) com

> > Subject: Re: [ ]

> >

> >

> >

> >

> >

> > Sharon,

> > I sure hope you are correct..I hope..I had so many issues with Gleevec it

> > almost seems unreal to be on sprycel and not have all those issues..Night

> > and day difference.. Hope I am able to remain at a 4 log reduction as

well..I

> > feel so much better already after just 10 days.I was wondering how long the

> > gleevec will stick around? Maybe it is all out of my system and that is why

> > I am feeling better or maybe it isn't all out yet and I may start to even

> > feel wonderful..lol. ..Wouldn't that be great..I don't have nearly as much

> > fatigue so far.I am going to think positive here and hope it only gets

> > better..I am off to a good start for sure..Thanks for the encouragment.

..Have

> > a great weekend..

> > SharonS

> >

> > In groups (DOT) <mailto:% 40groups. com> com, " Sharon

Teichera "

> > <onthewtr@> wrote:

> > >

> > > Sharon S

> > >

> > >

> > >

> > > Don't wait for them (side effects) they may not come. Think positive!

> > >

> > > Good luck

> > >

> > > Sharon T

> > >

> >

> >

> >

> >

> >

> >

[Guest guest]

I have been on Sprycel 1 week today. I also have shin and hip pain and a slight

headache .Also am tired and trouble getting going in the morning. I still work

full time. If this is as bad as I get I will be so happy , I had a terrible

time with Gleevec. Fingers crossed for all of us no matter what our poison!!!

You are all in my prayers every night.

Eva

From: serenitywon

Sent: Sunday, August 09, 2009 3:20 PM

Subject: Re: [ ]

Bobby,

I started Sprycel on July 27,09.I just started to get the headaches and I have

been on it 2 weeks now..I took no break between Gleevec and Sprycel.Do you think

maybe the Gleevec is out of my system now and the Sprycel is kicking in?I have

also started having shin pain in my right shin.Not sure if any of my issues are

med related as I have been much busier than usual with helping my son move.I

don't feel as fatigued thus far but am having a hard time waking in the morning

but fine after I get up and moving..I will keep an eye out for the plueral

effusion..Thanks for your help..Hope you are having a great weekend..

SharonS

In , ROBERTA DOYLE <rcd1929@...> wrote:

>

> Hi , I only had headaches for about two weeks, and for the next year and a

half it was wonderful. No side effects at all, and in 10 months I reached CCR.

I was on 70mg a day, in the beginning of the trial. But the honeymoon didn't

last, after 1 1/2 yrs I got pleural effusion.And that would not have been as bad

as it got, but I went to the hospital because I was having a hard time

breathing, and they misdiagnosed me with pneumonia. Had I called Dr. Talpaz in

the beginning, he would have known, but the er and my gp did not listen when I

told them pleural effusion was a known side effects, they said it was pneumonia.

So by the time they realized it wasn't what they said it was, my lungs were so

full of fluid I had to have a thoracentesis done, and they removed 1 1/2 liters

of fluid, and Dr. Talpaz took me off Sprycel, and loaded me up with prednisone.

My point being, if you start to get short of breath, TELL YOUR ONC.

> And I don't understand doctors that do not always do bloodwork, especially if

you tell them you are tired,. My cml was detected during an annual physical,

the wbc was 25,000 and my gp knew right away it could be cml and sent me to the

cancer center. That was 14 years ago, and I'm still alive and kicking!! 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

> 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

>

[Guest guest]

Eva,

I am in 100% agreement with you..I am experiencing the same things..I will

also keep everyone of my fellow warriors in my prayers..

Take care

SharonS

In , " Eva " <evaob365@...> wrote:

>

> I have been on Sprycel 1 week today. I also have shin and hip pain and a

slight headache .Also am tired and trouble getting going in the morning. I still

work full time. If this is as bad as I get I will be so happy , I had a

terrible time with Gleevec. Fingers crossed for all of us no matter what our

poison!!! You are all in my prayers every night.

> Eva

[Guest guest]

I had a 12 week break between Gleevec and Sprycel because my liver enzymes were

up. They are back to normal now. Thanks for everyone's prayers they are

reciprocated X 2. LOL

Eva

From: serenitywon

Sent: Sunday, August 09, 2009 3:20 PM

Subject: Re: [ ]

Bobby,

I started Sprycel on July 27,09.I just started to get the headaches and I have

been on it 2 weeks now..I took no break between Gleevec and Sprycel.Do you think

maybe the Gleevec is out of my system now and the Sprycel is kicking in?I have

also started having shin pain in my right shin.Not sure if any of my issues are

med related as I have been much busier than usual with helping my son move.I

don't feel as fatigued thus far but am having a hard time waking in the morning

but fine after I get up and moving..I will keep an eye out for the plueral

effusion..Thanks for your help..Hope you are having a great weekend..

SharonS

In , ROBERTA DOYLE <rcd1929@...> wrote:

>

> Hi , I only had headaches for about two weeks, and for the next year and a

half it was wonderful. No side effects at all, and in 10 months I reached CCR.

I was on 70mg a day, in the beginning of the trial. But the honeymoon didn't

last, after 1 1/2 yrs I got pleural effusion.And that would not have been as bad

as it got, but I went to the hospital because I was having a hard time

breathing, and they misdiagnosed me with pneumonia. Had I called Dr. Talpaz in

the beginning, he would have known, but the er and my gp did not listen when I

told them pleural effusion was a known side effects, they said it was pneumonia.

So by the time they realized it wasn't what they said it was, my lungs were so

full of fluid I had to have a thoracentesis done, and they removed 1 1/2 liters

of fluid, and Dr. Talpaz took me off Sprycel, and loaded me up with prednisone.

My point being, if you start to get short of breath, TELL YOUR ONC.

> And I don't understand doctors that do not always do bloodwork, especially if

you tell them you are tired,. My cml was detected during an annual physical,

the wbc was 25,000 and my gp knew right away it could be cml and sent me to the

cancer center. That was 14 years ago, and I'm still alive and kicking!! 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

> 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

>

[Guest guest]

Hi Eva:  I have had my numbers go that low on my Gleevec, but then they would

come up the following blood test.  Did your doctor say when he wanted to do

another blood work on you.  Your platelets are okay, and you do not want your

HGB to drop lower.  I think the WBC is low enough too.  I am not a doctor, but

you said this doctor seemed to dislike you questioning his or her authority. 

You say whatever you think at all times.  Apparently this is your Oncologist. 

If you have a Primary doctor, then ask them their opinion just based on your

counts.

     Trey or Zavie or one of the more knowledgeable people should answer this

for you.

But I do know you should keep on top of this.  How long is your regular doctor

going to be out?

From: Eva <evaob365@...>

Subject: [ ]

" " < >

Date: Thursday, August 27, 2009, 7:33 PM

 

I think my Sprycel is working too well but my onc says just to carry on .

WBC-3.7

PLT-117

HGB-107

Neutrophils- 1.0

A;; seems to low to me and when I questioned him he got all defensive.

My regular onc is on 6 months maternity leave.

What do you guys thin?

Thanks ; Eva

[Guest guest]

Looks similar to mine today (I just started Sprycel about 5 weeks ago). My

platelets were lower (70) and my hemoglobin was 9.4 but that was up almost a

point. The nurse told me that it drops and then rises and levels off. I am

having another blood test in a week. In my mind the platelets may have already

dropped because I had some little red dots earlier in the week around my ankles

and eyes but they have gone. I was afraid my hemoglobin would never rise again.

So I think things for me are looking up.

From: Eva <evaob365@...>

Subject: [ ]

" " < >

Date: Thursday, August 27, 2009, 4:33 PM

 

I think my Sprycel is working too well but my onc says just to

carry on .

WBC-3.7

PLT-117

HGB-107

Neutrophils- 1.0

A;; seems to low to me and when I questioned him he got all defensive.

My regular onc is on 6 months maternity leave.

What do you guys thin?

Thanks ; Eva

[Guest guest]

Eva,

When I first (2007) began on Sprycel I had 0 white and 0 platelets I only

received Platelets and White cells once. But once the CML was getting under

control My Blood leveled out. You just have to be very careful to not get

bruised nor cut. I was pulling weeds in my flower bed and had a grass cut on my

finger thought it would never get well, was infected by the end of the day. So

word of warning be careful. Today I am happy to say I am in Remission, and blood

counts are good.

Anita

________________________________

From: Bev Blair <bbobblair@...>

Sent: Thursday, August 27, 2009 6:49:46 PM

Subject: Re: [ ]

Looks similar to mine today (I just started Sprycel about 5 weeks ago). My

platelets were lower (70) and my hemoglobin was 9.4 but that was up almost a

point. The nurse told me that it drops and then rises and levels off. I am

having another blood test in a week. In my mind the platelets may have already

dropped because I had some little red dots earlier in the week around my ankles

and eyes but they have gone. I was afraid my hemoglobin would never rise again.

So I think things for me are looking up.

From: Eva <evaob365hotmail (DOT) com>

Subject: [ ]

" " <groups (DOT) com>

Date: Thursday, August 27, 2009, 4:33 PM

I think my Sprycel is working too well but my onc says just to carry on .

WBC-3.7

PLT-117

HGB-107

Neutrophils- 1.0

A;; seems to low to me and when I questioned him he got all defensive.

My regular onc is on 6 months maternity leave.

What do you guys thin?

Thanks ; Eva