Re: Sprycel anxiety attacks

[Guest guest]

>Hi . My husband is on Sprycel 100 mg dose but has been

from the very beginning. He has not had any side effects. But in

the last month or so, he has been extremely tired. He is a welder

who works out in the heat so I think that is why he is so tired.

But he will not slow down. He has also become very moody. I am sure

that comes from being so exhausted. He has had really good luck

with Sprycel so far. He goes to the doctor on Monday. I will let

everyone knoow how it turns out. I did not know that anxiety and

depression were side effects to Sprycel. You and joel are in my

thoughts and prayers

> Hi all---

> My husband, , is in his 6th week of Sprycel--he is at the

highest

> doseage of 140mg/day. Had some strange side affects the first few

days, but

> they came and went. One of the most frustrating things for him has

been the

> lack of consistency with Sprycel side affects...with Gleevec he

had the

> fatigue shortly after taking Gleevec, and some headaches here and

there, but

> they were somewhat " patterned " . With Sprycel, the side affects

seem to jump

> out of nowhere...makes feel a little more tied to home, since

he doesnt

> know if and when he might not feel that good. The inconsistency of

the side

> affects is almost as troublesome as the side affects themselves.

>

> The reason I am writing, though--he has been having some anxiety

attacks

> over the last few weeks, something has never experienced

before. He

> looked up the list of side affects for Sprycel today, and anxiety

attacks

> and depression are listed in the " frequent " category. Anyone else

on Sprycel

> dealing with this, too? And, if so...are you on the 140/mg dose or

the

> 100/mg dose?

>

> Regards,

> Cervera

> wife of Cervera - age 34

> Dx 7/2006, was on 400mg/Gleevec daily

> Switched to Sprycel (due to Gleevec liver intolerance)

6/29/07..140mg/daily

>

> _________________________________________________________________

> Find a local pizza place, movie theater, and more….then map the

best route!

> http://maps.live.com/default.aspx?v=2 & ss=yp.bars~yp.pizza~yp.movie%

20theater & cp=42.358996~-71.056691 & style=r & lvl=13 & tilt=-90 & dir=0 & alt=-

1000 & scene=950607 & encType=1 & FORM=MGAC01

>

[Guest guest]

Hi --

Yes, let us know how your husband is doing after his doc appt.

, too, has been more " moody " , but I dont even know if I can call it

" moody " . He has never had any experience with ever feeling anything other

than " happy " and " upbeat " and " positive " , but these last few weeks he has

been more " down " . I am used to being married to a very positive man, even

after his diagnosis of CML, the removal of the blood clot in his brain, he

still always saw things as " this was meant to be " , " we'll get through this " ,

" this is meant to be a learning experience. " And, for the most part, he

still does feel that way, but lately there has been a more general down

shadow around him. We feel confident it is just one more thing we need to

work through, and adjust to our new " norm " . I will say that feels a

little better knowing that it may be Sprycel causing him to be anxious and

worry, just in that he now knows there is an explanation for it (the

medications), and not because he is crazy or anything. Please, dont take

this as me saying that people who ARENT on medications and experience these

things are " crazy " ! This is just so out of the norm for , and it crept

up on him and sort of shocked him. It may be, too, just deep seeded " issues "

about having cancer, worrying about his future and family, etc.

All in all I know this forum is meant for CML patients, so I dont want to

use this forum as a " wives of CML patients " discussion board, but thank you

for your insights...I look forward to hearing about your husband's success

with Sprycel.

Regards,

Cervera

>From: sarahschrade <no_reply >

>Reply-

>

>Subject: [ ] Re: Sprycel anxiety attacks

>Date: Thu, 09 Aug 2007 21:27:24 -0000

>

>

> >Hi . My husband is on Sprycel 100 mg dose but has been

>from the very beginning. He has not had any side effects. But in

>the last month or so, he has been extremely tired. He is a welder

>who works out in the heat so I think that is why he is so tired.

>But he will not slow down. He has also become very moody. I am sure

>that comes from being so exhausted. He has had really good luck

>with Sprycel so far. He goes to the doctor on Monday. I will let

>everyone knoow how it turns out. I did not know that anxiety and

>depression were side effects to Sprycel. You and joel are in my

>thoughts and prayers

>

> > Hi all---

> > My husband, , is in his 6th week of Sprycel--he is at the

>highest

> > doseage of 140mg/day. Had some strange side affects the first few

>days, but

> > they came and went. One of the most frustrating things for him has

>been the

> > lack of consistency with Sprycel side affects...with Gleevec he

>had the

> > fatigue shortly after taking Gleevec, and some headaches here and

>there, but

> > they were somewhat " patterned " . With Sprycel, the side affects

>seem to jump

> > out of nowhere...makes feel a little more tied to home, since

>he doesnt

> > know if and when he might not feel that good. The inconsistency of

>the side

> > affects is almost as troublesome as the side affects themselves.

> >

> > The reason I am writing, though--he has been having some anxiety

>attacks

> > over the last few weeks, something has never experienced

>before. He

> > looked up the list of side affects for Sprycel today, and anxiety

>attacks

> > and depression are listed in the " frequent " category. Anyone else

>on Sprycel

> > dealing with this, too? And, if so...are you on the 140/mg dose or

>the

> > 100/mg dose?

> >

> > Regards,

> > Cervera

> > wife of Cervera - age 34

> > Dx 7/2006, was on 400mg/Gleevec daily

> > Switched to Sprycel (due to Gleevec liver intolerance)

>6/29/07..140mg/daily

> >

> > _________________________________________________________________

> > Find a local pizza place, movie theater, and more….then map the

>best route!

> > http://maps.live.com/default.aspx?v=2 & ss=yp.bars~yp.pizza~yp.movie%

>20theater & cp=42.358996~-71.056691 & style=r & lvl=13 & tilt=-90 & dir=0 & alt=-

>1000 & scene=950607 & encType=1 & FORM=MGAC01

> >

>

>

_________________________________________________________________

Find a local pizza place, movie theater, and more….then map the best route!

http://maps.live.com/default.aspx?v=2 & ss=yp.bars~yp.pizza~yp.movie%20theater & cp=\

42.358996~-71.056691 & style=r & lvl=13 & tilt=-90 & dir=0 & alt=-1000 & scene=950607 & encTyp\

e=1 & FORM=MGAC01

[Guest guest]

>> All in all I know this forum is meant for CML patients, so I dont

want to

> use this forum as a " wives of CML patients " discussion board, but

thank you

> for your insights...I look forward to hearing about your husband's

success

> with Sprycel.

>

> Regards,

> Cervera

******************************************************

Hi ,

I've copied and pasted the " blurb " on our home page:

" is a support group dedicated to patients who have Chronic

Myelogenous Leukemia as well as their loved ones.

members include patients from around the world who see some of

the top doctors in the field of CML. We are lucky to have them

interact with us and share the latest information regarding current

treatment options. We also have family members and other loved ones

of CML patients who support each other from the perspective of being

a caregiver to someone with CML.

welcomes anyone who wants to communicate with CML patients

and/or their caregivers. "

So , please don't feel like you need to censor yourself because

you're the CML patient's wife and not the actual patient. Your

feelings, knowledge, input and concerns are just as important to us

as those of the patients themselves.

Tracey

[Guest guest]

Thank you ! Often, since most times I post, and does not, I feel

like people might be saying... " ohhh....not the worried wife again.... " !!!

Thanks for reminding me that my voice is heard on this forum, too.

That means alot,

>From: " Tracey " <traceyincanada@...>

>Reply-

>

>Subject: [ ] Re: Sprycel anxiety attacks

>Date: Thu, 09 Aug 2007 22:03:28 -0000

>

>

> >> All in all I know this forum is meant for CML patients, so I dont

>want to

> > use this forum as a " wives of CML patients " discussion board, but

>thank you

> > for your insights...I look forward to hearing about your husband's

>success

> > with Sprycel.

> >

> > Regards,

> > Cervera

>

>******************************************************

>

>Hi ,

>

>I've copied and pasted the " blurb " on our home page:

>

> " is a support group dedicated to patients who have Chronic

>Myelogenous Leukemia as well as their loved ones.

>

> members include patients from around the world who see some of

>the top doctors in the field of CML. We are lucky to have them

>interact with us and share the latest information regarding current

>treatment options. We also have family members and other loved ones

>of CML patients who support each other from the perspective of being

>a caregiver to someone with CML.

>

> welcomes anyone who wants to communicate with CML patients

>and/or their caregivers. "

>

>So , please don't feel like you need to censor yourself because

>you're the CML patient's wife and not the actual patient. Your

>feelings, knowledge, input and concerns are just as important to us

>as those of the patients themselves.

>

>Tracey

>

>

_________________________________________________________________

Tease your brain--play Clink! Win cool prizes!

http://club.live.com/clink.aspx?icid=clink_hotmailtextlink2

[Guest guest]

Thank you ! Often, since most times I post, and does not, I feel

like people might be saying... " ohhh....not the worried wife again.... " !!!

______________

Hi ,

I have been on CML lists for years and often it is wives that post about

their husbands...just a role that they naturally play.

RE: the Sprycel side effects. I am on 100mg and approaching the 2 year

mark......many people on this drug will say that the side effects seem to

cycle. So at least if you have an annoying side effect, it is bound to

leave for awhile and then maybe return....but also some just go away. I am

in a Sprycel trial and Carolyn (Druker's nurse) always asks about mood (it

is on the checklist). One thing about Sprycel vs Gleevec is that Sprycel

crosses the brain blood barrier, so maybe it has a bigger effect on the brain?

When I notice something, it is usually that I am a bit more irritable or

short tempered.....but it also passes. I think giving your body the

advantage of a bit more rest and lots of water might be helpful, so the

drug does not effect you so much.

Did Dr. Druker have an opinion about being on 140mg vs the more

standard 100mg dose? Oh, and 140mg is the higher standard dose but it is

not the highest dose people are on....some have been on 180 and even 200mg

in trials. I had much worse side effects for my first 5 months (worse than

Gleevec for me) but now most are gone and this is definitely an easier drug

for me to take (and I know some other old timers who would say the same

thing).

Best to you guys,

C.

[Guest guest]

Hi ---I didn't realize that you have been on Sprycel for two years! My

son, , just started two weeks ago due to an increasing pcr. HOw is it

working for you? Rosemary (from Salem)

>From: Cogan <ncogan@...>

>Reply-

>

>Subject: [ ] Re: Sprycel anxiety attacks

>Date: Sun, 12 Aug 2007 14:57:42 -0700

>

>

>Thank you ! Often, since most times I post, and does not, I feel

>like people might be saying... " ohhh....not the worried wife again.... " !!!

>______________

>

>Hi ,

>I have been on CML lists for years and often it is wives that post about

>their husbands...just a role that they naturally play.

>

>RE: the Sprycel side effects. I am on 100mg and approaching the 2 year

>mark......many people on this drug will say that the side effects seem to

>cycle. So at least if you have an annoying side effect, it is bound to

>leave for awhile and then maybe return....but also some just go away. I am

>in a Sprycel trial and Carolyn (Druker's nurse) always asks about mood (it

>is on the checklist). One thing about Sprycel vs Gleevec is that Sprycel

>crosses the brain blood barrier, so maybe it has a bigger effect on the

>brain?

>When I notice something, it is usually that I am a bit more irritable or

>short tempered.....but it also passes. I think giving your body the

>advantage of a bit more rest and lots of water might be helpful, so the

>drug does not effect you so much.

>

>Did Dr. Druker have an opinion about being on 140mg vs the more

>standard 100mg dose? Oh, and 140mg is the higher standard dose but it is

>not the highest dose people are on....some have been on 180 and even 200mg

>in trials. I had much worse side effects for my first 5 months (worse than

>Gleevec for me) but now most are gone and this is definitely an easier drug

>for me to take (and I know some other old timers who would say the same

>thing).

>Best to you guys,

> C.

>

[Guest guest]

Hi ---

You asked about Dr. Druker and his opinion about being on 140mg vs. 100

of Sprycel. He said that he usually is prescribing the 100mg doseage, but

that if is handling it OK, to stick with it and know that he has wiggle

room if he needs to move down to the 100mg. At the point we saw Dr. Druker

was having his worst side affect as of yet - the anxiety attacks. But,

we didnt talk about them much because we didnt think it was Sprycel,

rather...the fact that we have been through so much in the last year, and

now we were at a crossroads with the Gleevec to Sprycel change....we

attributed his anxiety (though he has never had this before), to the stroke

last year, the being in the ICU for 2 weeks to remove the bloodclot in his

brain that caused the stroke, the diagnosis of leukemia, the birth of our

first child, and just the general life changes that come along with all of

this! But, after lots of soul searching, tons of praying, and the general

" acceptance " of all of these things that occured, the anxiety keeps

happening...almost daily says. But, it comes and often is gone again

within like 15-20 minutes. He also mentions a deep, deep fatigue that comes

along with the " attacks " .

Well--gotta run after my little one!

Take care,

>From: Cogan <ncogan@...>

>Reply-

>

>Subject: [ ] Re: Sprycel anxiety attacks

>Date: Sun, 12 Aug 2007 14:57:42 -0700

>

>

>Thank you ! Often, since most times I post, and does not, I feel

>like people might be saying... " ohhh....not the worried wife again.... " !!!

>______________

>

>Hi ,

>I have been on CML lists for years and often it is wives that post about

>their husbands...just a role that they naturally play.

>

>RE: the Sprycel side effects. I am on 100mg and approaching the 2 year

>mark......many people on this drug will say that the side effects seem to

>cycle. So at least if you have an annoying side effect, it is bound to

>leave for awhile and then maybe return....but also some just go away. I am

>in a Sprycel trial and Carolyn (Druker's nurse) always asks about mood (it

>is on the checklist). One thing about Sprycel vs Gleevec is that Sprycel

>crosses the brain blood barrier, so maybe it has a bigger effect on the

>brain?

>When I notice something, it is usually that I am a bit more irritable or

>short tempered.....but it also passes. I think giving your body the

>advantage of a bit more rest and lots of water might be helpful, so the

>drug does not effect you so much.

>

>Did Dr. Druker have an opinion about being on 140mg vs the more

>standard 100mg dose? Oh, and 140mg is the higher standard dose but it is

>not the highest dose people are on....some have been on 180 and even 200mg

>in trials. I had much worse side effects for my first 5 months (worse than

>Gleevec for me) but now most are gone and this is definitely an easier drug

>for me to take (and I know some other old timers who would say the same

>thing).

>Best to you guys,

> C.

>

_________________________________________________________________

A new home for Mom, no cleanup required. All starts here.

http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us

[Guest guest]

Sprycel is said to sometime cause cardiac arrhythmia and syncope, that could

produce symptoms like the ones you described : sudden anxiety, weakness,

going away quickly. Also lightheadedness or light headaches.

Marcos.

On 8/13/07, Cervera <weez_555@...> wrote:

>

> Hi ---

> You asked about Dr. Druker and his opinion about being on 140mg vs.

> 100

> of Sprycel. He said that he usually is prescribing the 100mg doseage, but

> that if is handling it OK, to stick with it and know that he has

> wiggle

> room if he needs to move down to the 100mg. At the point we saw Dr. Druker

>

> was having his worst side affect as of yet - the anxiety attacks.

> But,

> we didnt talk about them much because we didnt think it was Sprycel,

> rather...the fact that we have been through so much in the last year, and

> now we were at a crossroads with the Gleevec to Sprycel change....we

> attributed his anxiety (though he has never had this before), to the

> stroke

> last year, the being in the ICU for 2 weeks to remove the bloodclot in his

>

> brain that caused the stroke, the diagnosis of leukemia, the birth of our

> first child, and just the general life changes that come along with all of

>

> this! But, after lots of soul searching, tons of praying, and the general

> " acceptance " of all of these things that occured, the anxiety keeps

> happening...almost daily says. But, it comes and often is gone again

> within like 15-20 minutes. He also mentions a deep, deep fatigue that

> comes

> along with the " attacks " .

>

> Well--gotta run after my little one!

> Take care,

>

>

> >From: Cogan <ncogan@... <ncogan%40uoregon.edu>>

> >Reply- <%40>

> > <%40>

> >Subject: [ ] Re: Sprycel anxiety attacks

> >Date: Sun, 12 Aug 2007 14:57:42 -0700

> >

> >

> >Thank you ! Often, since most times I post, and does not, I

> feel

> >like people might be saying... " ohhh....not the worried wife again.... " !!!

> >______________

> >

> >Hi ,

> >I have been on CML lists for years and often it is wives that post about

> >their husbands...just a role that they naturally play.

> >

> >RE: the Sprycel side effects. I am on 100mg and approaching the 2 year

> >mark......many people on this drug will say that the side effects seem to

> >cycle. So at least if you have an annoying side effect, it is bound to

> >leave for awhile and then maybe return....but also some just go away. I

> am

> >in a Sprycel trial and Carolyn (Druker's nurse) always asks about mood

> (it

> >is on the checklist). One thing about Sprycel vs Gleevec is that Sprycel

> >crosses the brain blood barrier, so maybe it has a bigger effect on the

> >brain?

> >When I notice something, it is usually that I am a bit more irritable or

> >short tempered.....but it also passes. I think giving your body the

> >advantage of a bit more rest and lots of water might be helpful, so the

> >drug does not effect you so much.

> >

> >Did Dr. Druker have an opinion about being on 140mg vs the more

> >standard 100mg dose? Oh, and 140mg is the higher standard dose but it is

> >not the highest dose people are on....some have been on 180 and even

> 200mg

> >in trials. I had much worse side effects for my first 5 months (worse

> than

> >Gleevec for me) but now most are gone and this is definitely an easier

> drug

> >for me to take (and I know some other old timers who would say the same

> >thing).

> >Best to you guys,

> > C.

> >

>

> __________________________________________________________

> A new home for Mom, no cleanup required. All starts here.

>

http://www.reallivemoms.com?ocid=TXT_TAGHM & loc=us<http://www.reallivemoms.com/?o\

cid=TXT_TAGHM & loc=us>

>

>

>

[Guest guest]

But, after lots of soul searching, tons of praying, and the general

" acceptance " of all of these things that occured, the anxiety keeps

happening...almost daily says. But, it comes and often is gone again

within like 15-20 minutes. He also mentions a deep, deep fatigue that comes

along with the " attacks " .

________________________

Hi ,

Yes, you and have dealt with a lot this past year. I have some

suggestions as a retired physical therapist who often worked with highly

stressed university students. When first starts to feel some anxiety

coming on, do some slow, deep belly breathing...ideally in a sitting or

lying down position. Close his eyes, focus only on his breathing....and

then he can have something that he says or thinks as he exhales.....like I

am safe, I am doing well, I am peaceful.....some positive affirmation that

has meaning to him. He might have a 'body memory' of an earlier highly

anxious moment that he is tapping into....and he can learn to over-ride

this. When you practice something like this, is gets easier and it takes

less to dispel the anxiety....sometimes even just a few slow deep breaths.

I admire you both for all you have coped with........and remember that

along with all the tough stuff came your little son.

C.

[Guest guest]

>Hi . My husband is also 100 mg of Sprycel. It will be a year

in November. He too is moody and short tempered at times. I

thought it was just him trying to deal with having CML. I did not

know that it could be the medecine. He sees Dr. Kantarjian at MD

in Houston Texas. He had an appointment yesterday. His WBC

was 5.1. His bone marrow results were 0.26. ( That were the results

for his bone marrow in May). It will take about two weeks to get

the bone marrow results from yesterday. Just curious how old you

are? My husband is 30.

>

> Thank you ! Often, since most times I post, and does

not, I feel

> like people might be saying... " ohhh....not the worried wife

again.... " !!!

> ______________

>

> Hi ,

> I have been on CML lists for years and often it is wives that post

about

> their husbands...just a role that they naturally play.

>

> RE: the Sprycel side effects. I am on 100mg and approaching the 2

year

> mark......many people on this drug will say that the side effects

seem to

> cycle. So at least if you have an annoying side effect, it is

bound to

> leave for awhile and then maybe return....but also some just go

away. I am

> in a Sprycel trial and Carolyn (Druker's nurse) always asks about

mood (it

> is on the checklist). One thing about Sprycel vs Gleevec is that

Sprycel

> crosses the brain blood barrier, so maybe it has a bigger effect

on the brain?

> When I notice something, it is usually that I am a bit more

irritable or

> short tempered.....but it also passes. I think giving your body

the

> advantage of a bit more rest and lots of water might be helpful,

so the

> drug does not effect you so much.

>

> Did Dr. Druker have an opinion about being on 140mg vs the

more

> standard 100mg dose? Oh, and 140mg is the higher standard dose

but it is

> not the highest dose people are on....some have been on 180 and

even 200mg

> in trials. I had much worse side effects for my first 5 months

(worse than

> Gleevec for me) but now most are gone and this is definitely an

easier drug

> for me to take (and I know some other old timers who would say the

same

> thing).

> Best to you guys,

> C.

>

[Guest guest]

.. His bone marrow results were 0.26. ( That were the results

for his bone marrow in May). It will take about two weeks to get

the bone marrow results from yesterday. Just curious how old you

are? My husband is 30.

___________________

Hi ,

I turned 60 this year....but I don't feel old. I took an early retirement

at age 57 because I was going to be starting a drug trial with Sprycel and

had the opportunity to do so. I have had CML for 9 years, since age

51......a bit before Gleevec was available......so I had some treatment

with just hydrea, and then a short trial with interferon and ara-c. In

comparison, the drugs are a piece of cake!

C.