Re: 's Sprycel update - 12 days and counting!

[Guest guest]

, great to hear from you!! And, thanks for the update. I had been

wondering how it was going for you?

Chris

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi ,

Glad to hear you are doing better with Sprycel. Just in case side effects

get worse, BMS reported in December that 100mg/day has similar remission

results that 140mg/day (2 x 70mg) with lesser side effects. Here is the link

to the press release from BMS :

*http://tinyurl.com/2xet94* <http://tinyurl.com/2xet94>

Although if you are seeing Druker I am sure he knows about it.

Cheers,

Marcos.

On 7/9/07, Cervera <weez_555@...> wrote:

>

> Hi all!

> My wife, , writes alot, and I figured it was time for me to write

> in...

>

> Firstly, I just wanted thank you all for the words of advice and

> information

> that you have provided to and I. We will always be indebted to you

> all

> for your support.

>

> I started Sprycel at 140mg (70mg, twice a day), and am still currently on

> that doseage. The first day, I felt fine about half the day...then broke

> out

> in hives/rashing. I had a bout of intensive sweating, light head, and

> naseua, but that only lasted for about 10-15 minutes. I felt generally

> " off "

> the second half of the day, and a headache began at the end of day 1.

> Headache lasted for 2.5 - 3 days, I only had to take Tylenol once, and it

> took care of the headache. The first week included some days where I would

>

> get super tired by late afternoon. In fact, 4th of July was a pretty

> eventful day, and by the end of it, I was completely exhausted. Over the

> last 2 weeks, I have had strange bumps and rashes come and go, never

> lasting

> more than a few hours. The first few nights I would wake up after about 5

> -

> 6 hours from the evening dose, with itching and sometimes strange

> sensations

> in my hands and feet. During the first week, most of the side affects I

> mentioned above, would appear about 5-6 hours after taking one of my

> pills.

> All these symptoms have now subsided. I am only experiencing minor

> tiredness

> for about an hour after waking up, and again sometimes in the late evening

>

> before going to bed. My days are full of " normal " energy for the most

> part.

> I must say I feel pretty good considering how new Sprycel is to my system.

>

> I had my 1st CBCs done today. My WBC is 5300, right in the normal range,

> on

> Gleevec I always lingered right around 3400. Red blood cells, hemoglobin

> are

> slightly low (as is normal for me), platelets dropped from my normal

> 140-160, to 95. I spoke to my onc today, and she confirmed what I had

> already researched which is that we are good on platelets down to 50,000

> below that we would have to take a Sprycel break to let counts recover. If

>

> platelets were to drop again, we'd have to take another break and then

> start

> back on a reduced doseage. As far as my liver (the reason for switching

> from

> Gleevec to Sprycel), my ALT 2 weeks ago was in the 70's, today it was 38,

> that is just a tad above " normal " range, so that is looking good as well.

>

> In summary, the first week wasnt too bad for the most part, but I

> definitely

> felt the new medication. As the days progress, each day has been better.

> As

> far as today, it was a great day! I spent time in my yard, and after being

>

> tired for an hour this morning, have felt " normal " ever since. I am

> feeling

> pretty upbeat about Sprycel so far, but will take it day by day.

>

> One more note- in comparison to Gleevec, it's nice not to worry every time

> I

> take the medication. I dont have to gorge myself to keep the nausea at

> bay.

> Also, there is no tiredness whatsoever, following my medication, which was

>

> standard for me with Gleevec. I can confirm that there is no problem

> whatsoever with taking this med on an empty stomach. I have never felt any

>

> discomfort after taking this med with food or without food - I cannot have

>

> said that with Gleevec. I cant remember for certain, but I believe that it

>

> took me quite a bit longer to " adjust " to Gleevec than what it feels like

> this time around, but I know that that can change....we'll see...

>

> We still are seeing Dr. Druker the end of this month. Thanks again to

> everyone for all of your help...

>

> Regards,

> Cervera

> age 34

> Diagnosed 6/2006

> Was on 400mg Gleevec

> Changed to Sprycel 7/2007 due to liver intolerance

> Sprycel doseage: 140mg/day

>

> __________________________________________________________

> http://liveearth.msn.com

>

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 329 9920 x 305

650 630 5015 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

[Guest guest]

hi ,

It's great to hear from you and equally great to hear of your

experience with Sprycel. As time goes on, more and more members will

have the opportunity to try Sprycel and I'm sure that your experience

with it will be of value to them.

Thanks so much for taking the time to update us. I hope that things

will continue to get easier for you and I'm looking forward to

following your story.

Tracey

>

> Hi all!

> My wife, , writes alot, and I figured it was time for me to

write in...

>

> Firstly, I just wanted thank you all for the words of advice and

information

> that you have provided to and I. We will always be indebted

to you all

> for your support.

>

> I started Sprycel at 140mg (70mg, twice a day), and am still

currently on

> that doseage. The first day, I felt fine about half the day...then

broke out

> in hives/rashing. I had a bout of intensive sweating, light head,

and

> naseua, but that only lasted for about 10-15 minutes. I felt

generally " off "

> the second half of the day, and a headache began at the end of day

1.

> Headache lasted for 2.5 - 3 days, I only had to take Tylenol once,

and it

> took care of the headache. The first week included some days where

I would

> get super tired by late afternoon. In fact, 4th of July was a

pretty

> eventful day, and by the end of it, I was completely exhausted.

Over the

> last 2 weeks, I have had strange bumps and rashes come and go,

never lasting

> more than a few hours. The first few nights I would wake up after

about 5 -

> 6 hours from the evening dose, with itching and sometimes strange

sensations

> in my hands and feet. During the first week, most of the side

affects I

> mentioned above, would appear about 5-6 hours after taking one of

my pills.

> All these symptoms have now subsided. I am only experiencing minor

tiredness

> for about an hour after waking up, and again sometimes in the late

evening

> before going to bed. My days are full of " normal " energy for the

most part.

> I must say I feel pretty good considering how new Sprycel is to my

system.

>

> I had my 1st CBCs done today. My WBC is 5300, right in the normal

range, on

> Gleevec I always lingered right around 3400. Red blood cells,

hemoglobin are

> slightly low (as is normal for me), platelets dropped from my

normal

> 140-160, to 95. I spoke to my onc today, and she confirmed what I

had

> already researched which is that we are good on platelets down to

50,000

> below that we would have to take a Sprycel break to let counts

recover. If

> platelets were to drop again, we'd have to take another break and

then start

> back on a reduced doseage. As far as my liver (the reason for

switching from

> Gleevec to Sprycel), my ALT 2 weeks ago was in the 70's, today it

was 38,

> that is just a tad above " normal " range, so that is looking good as

well.

>

> In summary, the first week wasnt too bad for the most part, but I

definitely

> felt the new medication. As the days progress, each day has been

better. As

> far as today, it was a great day! I spent time in my yard, and

after being

> tired for an hour this morning, have felt " normal " ever since. I am

feeling

> pretty upbeat about Sprycel so far, but will take it day by day.

>

> One more note- in comparison to Gleevec, it's nice not to worry

every time I

> take the medication. I dont have to gorge myself to keep the nausea

at bay.

> Also, there is no tiredness whatsoever, following my medication,

which was

> standard for me with Gleevec. I can confirm that there is no

problem

> whatsoever with taking this med on an empty stomach. I have never

felt any

> discomfort after taking this med with food or without food - I

cannot have

> said that with Gleevec. I cant remember for certain, but I believe

that it

> took me quite a bit longer to " adjust " to Gleevec than what it

feels like

> this time around, but I know that that can change....we'll see...

>

> We still are seeing Dr. Druker the end of this month. Thanks again

to

> everyone for all of your help...

>

> Regards,

> Cervera

> age 34

> Diagnosed 6/2006

> Was on 400mg Gleevec

> Changed to Sprycel 7/2007 due to liver intolerance

> Sprycel doseage: 140mg/day

>

> _________________________________________________________________

> http://liveearth.msn.com

>

[Guest guest]

Good to hear your doing well on the new medication, I experience side

effects but my doc has not said anything about problems with my liver, so I

am going to stay on Gleevec until I have to for whatever reason get off of

it, glad your doing well, take care.

Terry

On 7/10/07, Tracey <traceyincanada@...> wrote:

>

> hi ,

>

> It's great to hear from you and equally great to hear of your

> experience with Sprycel. As time goes on, more and more members will

> have the opportunity to try Sprycel and I'm sure that your experience

> with it will be of value to them.

>

> Thanks so much for taking the time to update us. I hope that things

> will continue to get easier for you and I'm looking forward to

> following your story.

>

> Tracey

>

>

> >

> > Hi all!

> > My wife, , writes alot, and I figured it was time for me to

> write in...

> >

> > Firstly, I just wanted thank you all for the words of advice and

> information

> > that you have provided to and I. We will always be indebted

> to you all

> > for your support.

> >

> > I started Sprycel at 140mg (70mg, twice a day), and am still

> currently on

> > that doseage. The first day, I felt fine about half the day...then

> broke out

> > in hives/rashing. I had a bout of intensive sweating, light head,

> and

> > naseua, but that only lasted for about 10-15 minutes. I felt

> generally " off "

> > the second half of the day, and a headache began at the end of day

> 1.

> > Headache lasted for 2.5 - 3 days, I only had to take Tylenol once,

> and it

> > took care of the headache. The first week included some days where

> I would

> > get super tired by late afternoon. In fact, 4th of July was a

> pretty

> > eventful day, and by the end of it, I was completely exhausted.

> Over the

> > last 2 weeks, I have had strange bumps and rashes come and go,

> never lasting

> > more than a few hours. The first few nights I would wake up after

> about 5 -

> > 6 hours from the evening dose, with itching and sometimes strange

> sensations

> > in my hands and feet. During the first week, most of the side

> affects I

> > mentioned above, would appear about 5-6 hours after taking one of

> my pills.

> > All these symptoms have now subsided. I am only experiencing minor

> tiredness

> > for about an hour after waking up, and again sometimes in the late

> evening

> > before going to bed. My days are full of " normal " energy for the

> most part.

> > I must say I feel pretty good considering how new Sprycel is to my

> system.

> >

> > I had my 1st CBCs done today. My WBC is 5300, right in the normal

> range, on

> > Gleevec I always lingered right around 3400. Red blood cells,

> hemoglobin are

> > slightly low (as is normal for me), platelets dropped from my

> normal

> > 140-160, to 95. I spoke to my onc today, and she confirmed what I

> had

> > already researched which is that we are good on platelets down to

> 50,000

> > below that we would have to take a Sprycel break to let counts

> recover. If

> > platelets were to drop again, we'd have to take another break and

> then start

> > back on a reduced doseage. As far as my liver (the reason for

> switching from

> > Gleevec to Sprycel), my ALT 2 weeks ago was in the 70's, today it

> was 38,

> > that is just a tad above " normal " range, so that is looking good as

> well.

> >

> > In summary, the first week wasnt too bad for the most part, but I

> definitely

> > felt the new medication. As the days progress, each day has been

> better. As

> > far as today, it was a great day! I spent time in my yard, and

> after being

> > tired for an hour this morning, have felt " normal " ever since. I am

> feeling

> > pretty upbeat about Sprycel so far, but will take it day by day.

> >

> > One more note- in comparison to Gleevec, it's nice not to worry

> every time I

> > take the medication. I dont have to gorge myself to keep the nausea

> at bay.

> > Also, there is no tiredness whatsoever, following my medication,

> which was

> > standard for me with Gleevec. I can confirm that there is no

> problem

> > whatsoever with taking this med on an empty stomach. I have never

> felt any

> > discomfort after taking this med with food or without food - I

> cannot have

> > said that with Gleevec. I cant remember for certain, but I believe

> that it

> > took me quite a bit longer to " adjust " to Gleevec than what it

> feels like

> > this time around, but I know that that can change....we'll see...

> >

> > We still are seeing Dr. Druker the end of this month. Thanks again

> to

> > everyone for all of your help...

> >

> > Regards,

> > Cervera

> > age 34

> > Diagnosed 6/2006

> > Was on 400mg Gleevec

> > Changed to Sprycel 7/2007 due to liver intolerance

> > Sprycel doseage: 140mg/day

> >

> > __________________________________________________________

> > http://liveearth.msn.com

> >

>

>

>

[Guest guest]

Hi . I am new to this group. My husband was dx Nov of 06. He

was put on Spyycel from the very beginning.( 50mg, twice a day) He

is on a research study at M D in Houston Texas. He really

never suffered from any side effects except for fatigue. He still

gets fatigued very easily. That is the whole reason why he went to

the doctor in the first place. He could feel that something was not

right. He could not make the whole day at work because he would get

so tired. He thought he was coming down with flu or something.

Then when the doctor called him the next day and told him that his

WBC was 175,000 and that he wanted him to go to MD , it felt

like our whole world was tumbling down. We spent three long days at

MD Andrson doing test after test and alot of waiting. I think that

was the worst part, waiting to see how bad it is. We caught it in

the beginning stage. The doctor told him to go on with his normal

life. He bowls and plays softball. He told him not to quit. So

far so good on the Spycel. He goes for another check up in August.

Hopefully everything will still be good. Sorry for this being so

long. It is the first time i have really talked to anybody about

his. --- In , " Cervera " <weez_555@...>

wrote:

>

> Hi all!

> My wife, , writes alot, and I figured it was time for me to

write in...

>

> Firstly, I just wanted thank you all for the words of advice and

information

> that you have provided to and I. We will always be indebted

to you all

> for your support.

>

> I started Sprycel at 140mg (70mg, twice a day), and am still

currently on

> that doseage. The first day, I felt fine about half the day...then

broke out

> in hives/rashing. I had a bout of intensive sweating, light head,

and

> naseua, but that only lasted for about 10-15 minutes. I felt

generally " off "

> the second half of the day, and a headache began at the end of day

1.

> Headache lasted for 2.5 - 3 days, I only had to take Tylenol once,

and it

> took care of the headache. The first week included some days where

I would

> get super tired by late afternoon. In fact, 4th of July was a

pretty

> eventful day, and by the end of it, I was completely exhausted.

Over the

> last 2 weeks, I have had strange bumps and rashes come and go,

never lasting

> more than a few hours. The first few nights I would wake up after

about 5 -

> 6 hours from the evening dose, with itching and sometimes strange

sensations

> in my hands and feet. During the first week, most of the side

affects I

> mentioned above, would appear about 5-6 hours after taking one of

my pills.

> All these symptoms have now subsided. I am only experiencing minor

tiredness

> for about an hour after waking up, and again sometimes in the late

evening

> before going to bed. My days are full of " normal " energy for the

most part.

> I must say I feel pretty good considering how new Sprycel is to my

system.

>

> I had my 1st CBCs done today. My WBC is 5300, right in the normal

range, on

> Gleevec I always lingered right around 3400. Red blood cells,

hemoglobin are

> slightly low (as is normal for me), platelets dropped from my

normal

> 140-160, to 95. I spoke to my onc today, and she confirmed what I

had

> already researched which is that we are good on platelets down to

50,000

> below that we would have to take a Sprycel break to let counts

recover. If

> platelets were to drop again, we'd have to take another break and

then start

> back on a reduced doseage. As far as my liver (the reason for

switching from

> Gleevec to Sprycel), my ALT 2 weeks ago was in the 70's, today it

was 38,

> that is just a tad above " normal " range, so that is looking good

as well.

>

> In summary, the first week wasnt too bad for the most part, but I

definitely

> felt the new medication. As the days progress, each day has been

better. As

> far as today, it was a great day! I spent time in my yard, and

after being

> tired for an hour this morning, have felt " normal " ever since. I

am feeling

> pretty upbeat about Sprycel so far, but will take it day by day.

>

> One more note- in comparison to Gleevec, it's nice not to worry

every time I

> take the medication. I dont have to gorge myself to keep the

nausea at bay.

> Also, there is no tiredness whatsoever, following my medication,

which was

> standard for me with Gleevec. I can confirm that there is no

problem

> whatsoever with taking this med on an empty stomach. I have never

felt any

> discomfort after taking this med with food or without food - I

cannot have

> said that with Gleevec. I cant remember for certain, but I believe

that it

> took me quite a bit longer to " adjust " to Gleevec than what it

feels like

> this time around, but I know that that can change....we'll see...

>

> We still are seeing Dr. Druker the end of this month. Thanks again

to

> everyone for all of your help...

>

> Regards,

> Cervera

> age 34

> Diagnosed 6/2006

> Was on 400mg Gleevec

> Changed to Sprycel 7/2007 due to liver intolerance

> Sprycel doseage: 140mg/day

>

> _________________________________________________________________

> http://liveearth.msn.com

>

[Guest guest]

Hi ,

Don't worry about long post that is what this group is for, to get your

thoughts out and to share your experiences with the group. I am glad your

husband is doing well on the treatment and I hope he stays that way. I know

how you felt about the waiting factor. I found out by getting called at work

by my family doctors office when they did routine blood work and my white

cell count was sky high. They did not tell me why but to go to an

appointment they set up for me with an Onco doc. Before then I did not even

know what an Onco doc was but looking on the net at work when I got off the

phone I found out what a high white cell count meant and nearly lost it.

Good luck and best wishes for you and your husband.

Terry

On 7/11/07, sarahschrade <no_reply > wrote:

>

> Hi . I am new to this group. My husband was dx Nov of 06. He

> was put on Spyycel from the very beginning.( 50mg, twice a day) He

> is on a research study at M D in Houston Texas. He really

> never suffered from any side effects except for fatigue. He still

> gets fatigued very easily. That is the whole reason why he went to

> the doctor in the first place. He could feel that something was not

> right. He could not make the whole day at work because he would get

> so tired. He thought he was coming down with flu or something.

> Then when the doctor called him the next day and told him that his

> WBC was 175,000 and that he wanted him to go to MD , it felt

> like our whole world was tumbling down. We spent three long days at

> MD Andrson doing test after test and alot of waiting. I think that

> was the worst part, waiting to see how bad it is. We caught it in

> the beginning stage. The doctor told him to go on with his normal

> life. He bowls and plays softball. He told him not to quit. So

> far so good on the Spycel. He goes for another check up in August.

> Hopefully everything will still be good. Sorry for this being so

> long. It is the first time i have really talked to anybody about

> his.

> >

> > Hi all!

> > My wife, , writes alot, and I figured it was time for me to

> write in...

> >

> > Firstly, I just wanted thank you all for the words of advice and

> information

> > that you have provided to and I. We will always be indebted

> to you all

> > for your support.

> >

> > I started Sprycel at 140mg (70mg, twice a day), and am still

> currently on

> > that doseage. The first day, I felt fine about half the day...then

> broke out

> > in hives/rashing. I had a bout of intensive sweating, light head,

> and

> > naseua, but that only lasted for about 10-15 minutes. I felt

> generally " off "

> > the second half of the day, and a headache began at the end of day

> 1.

> > Headache lasted for 2.5 - 3 days, I only had to take Tylenol once,

> and it

> > took care of the headache. The first week included some days where

> I would

> > get super tired by late afternoon. In fact, 4th of July was a

> pretty

> > eventful day, and by the end of it, I was completely exhausted.

> Over the

> > last 2 weeks, I have had strange bumps and rashes come and go,

> never lasting

> > more than a few hours. The first few nights I would wake up after

> about 5 -

> > 6 hours from the evening dose, with itching and sometimes strange

> sensations

> > in my hands and feet. During the first week, most of the side

> affects I

> > mentioned above, would appear about 5-6 hours after taking one of

> my pills.

> > All these symptoms have now subsided. I am only experiencing minor

> tiredness

> > for about an hour after waking up, and again sometimes in the late

> evening

> > before going to bed. My days are full of " normal " energy for the

> most part.

> > I must say I feel pretty good considering how new Sprycel is to my

> system.

> >

> > I had my 1st CBCs done today. My WBC is 5300, right in the normal

> range, on

> > Gleevec I always lingered right around 3400. Red blood cells,

> hemoglobin are

> > slightly low (as is normal for me), platelets dropped from my

> normal

> > 140-160, to 95. I spoke to my onc today, and she confirmed what I

> had

> > already researched which is that we are good on platelets down to

> 50,000

> > below that we would have to take a Sprycel break to let counts

> recover. If

> > platelets were to drop again, we'd have to take another break and

> then start

> > back on a reduced doseage. As far as my liver (the reason for

> switching from

> > Gleevec to Sprycel), my ALT 2 weeks ago was in the 70's, today it

> was 38,

> > that is just a tad above " normal " range, so that is looking good

> as well.

> >

> > In summary, the first week wasnt too bad for the most part, but I

> definitely

> > felt the new medication. As the days progress, each day has been

> better. As

> > far as today, it was a great day! I spent time in my yard, and

> after being

> > tired for an hour this morning, have felt " normal " ever since. I

> am feeling

> > pretty upbeat about Sprycel so far, but will take it day by day.

> >

> > One more note- in comparison to Gleevec, it's nice not to worry

> every time I

> > take the medication. I dont have to gorge myself to keep the

> nausea at bay.

> > Also, there is no tiredness whatsoever, following my medication,

> which was

> > standard for me with Gleevec. I can confirm that there is no

> problem

> > whatsoever with taking this med on an empty stomach. I have never

> felt any

> > discomfort after taking this med with food or without food - I

> cannot have

> > said that with Gleevec. I cant remember for certain, but I believe

> that it

> > took me quite a bit longer to " adjust " to Gleevec than what it

> feels like

> > this time around, but I know that that can change....we'll see...

> >

> > We still are seeing Dr. Druker the end of this month. Thanks again

> to

> > everyone for all of your help...

> >

> > Regards,

> > Cervera

> > age 34

> > Diagnosed 6/2006

> > Was on 400mg Gleevec

> > Changed to Sprycel 7/2007 due to liver intolerance

> > Sprycel doseage: 140mg/day

> >

> > __________________________________________________________

> > http://liveearth.msn.com

> >

>

>

>