Re: tasigna help or suggestions!!!!!

[Guest guest]

Jenifer....I was on Tasigna for about 7 months and had to stop....I was on

a trial at MDA. See my history below. I developed acute pancreatitis from

Tasigna and had to stop. Other than that, I had relatively few side

effects...some peripherial neuropathy in the feet but not serious...and

generally feeling tired which is common to all these drugs. Tasigna is a

little

more inconvenient to take than the others...you must take it on an empty

stomach twice a day. This means fasting for 2 hours before taking it and an

hour after taking it. Everyone works out their own schedule with the

drug...I took one dose in the very early morning...about 5am and the other

around

3 to 4 in the afternoon. Once you get used to a schedule that works for

you, it isn't too bad.

Did you develop the PE from the start...or did it come on later in your use

of Sprycel? How did you know you had PE? I have been on Sprycel for

about a year now and seem to be ok....I do get short of breath sometimes, but

stay fairly active. As you can see from below, I also was on Gleevec and

could not tolerate it either...so I have changed drugs 2 times. Don't

worry too much about the change......many have changed. I have never been

PCRU...but am pretty low at 0.01.

All the best!

Tom in KY

Tom Dunham, BD:8/1941

DX CML 12-23-2008

MDA Protocol: Tasigna-400mg; 2xday-1/09

Q PCR bone@ 0.17 7/09

Acute Pancreatitis-7/5/09

Stopped Tasigna-7/13/09

Q PCRU blood-7-29-09 !

Started Gleevec-400mg/day-7/31/09

Developed rash ~ 8/19/09

Rash treated with Steriods..improvement

Rash worsens~9/22/09

Stopped Gleevec-9/28/09

Restarted Gleevec @300mg/day-10/8/09

Stopped Gleevec-10/13/09-toxic rash\

Q PCR bone-0.05 (10/13/09)

Started Sprycel @ 100mg/day-10/20/09

Some bi-lateral peripheral neuroapathy in feet

Q PCR Bone 0.07 (4-10-10)

Q PCR Blood 0.01 (7-27-10)

Zavie 's Zero Club 1292

In a message dated 10/4/2010 10:18:08 A.M. Eastern Daylight Time,

vegasrnjen@... writes:

Hey all-

I might be switching to Tasigna due to fluid overload and reoccurring PE

in which I had a thorencentsis on Friday. They removed 1.3 Liters and I

can

still fill that I have some more on board. Having a echo today. Dr. Mauro

in OSHU (per email) feels it might be time for a drug holiday and switch.

I

an nervous about it as I have been PCRU on Spyrcel for 2.5 years. Athough

I

have had numerous side effects with Gleevec and Spyrcel including ALL of

the non-life threatening ones. Fatigue and bone/muscle pain being the most

annoying ones. De pigmentation of my skin and hair, SOB, edema, nausea,

and

such.....

What are some side effects that people suffer with on Tasigna? I have read

certain things about " fasting " and hair loss? Can anyone provide me with

maybe your experience with it. I am hoping that my PCR will remain

undetectable....Glad we have choices but makes me nervous to have to move

onto the

next drug....

I don't know why I can just reduce the drug dose since I have had such a

good response???

Thanks in advance for any suggestions!

RN

Wife and mother of 3 (14,11,9)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since

[Non-text portions of this message have been removed]

[Guest guest]

:

I really liked Tasigna and I have been

on all three. The reason I was switched

to Sprycel was it elevated my blood

pressure to dangerous levels and I

previously had no BP issues.

That does not mean you will have

BP issues, as these drugs seem

to affect everyone differently.

Matt

Fl

Sent from my iPhone

On Oct 4, 2010, at 10:17 AM, vegasrnjen@... wrote:

> Hey all-

> I might be switching to Tasigna due to fluid overload and reoccurring PE

> in which I had a thorencentsis on Friday. They removed 1.3 Liters and I can

> still fill that I have some more on board. Having a echo today. Dr. Mauro

> in OSHU (per email) feels it might be time for a drug holiday and switch. I

> an nervous about it as I have been PCRU on Spyrcel for 2.5 years. Athough I

> have had numerous side effects with Gleevec and Spyrcel including ALL of

> the non-life threatening ones. Fatigue and bone/muscle pain being the most

> annoying ones. De pigmentation of my skin and hair, SOB, edema, nausea, and

> such.....

>

> What are some side effects that people suffer with on Tasigna? I have read

> certain things about " fasting " and hair loss? Can anyone provide me with

> maybe your experience with it. I am hoping that my PCR will remain

> undetectable....Glad we have choices but makes me nervous to have to move onto

the

> next drug....

>

> I don't know why I can just reduce the drug dose since I have had such a

> good response???

>

> Thanks in advance for any suggestions!

> RN

> Wife and mother of 3 (14,11,9)

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since

>

>

[Guest guest]

Hi ,

I sometimes hate to ans questions like yours because I feel so fortunate and

some are not as fortunate as I am.

I was on gleevec for abt a year. (2004) had terrible terrible side effects

the rash being the worst. all over my body, eyebrow,eyelash and hair loss!!!

I do not know if I ever reached PCRU because they had not started giving me

the PCR test yet. Bone Marrow Biopsies was what I had and I was in

remission.

My Doctor decided I should go off gleevec for about three weeks and on to

Sprycel. That is what I did. I was on Sprycel for three years. My quality of

life was not perfect! I had many stomach problems and lived on Imodium. I

got a lot of colds and coughs, I just was not my self. Then one day I was

in the doctors office being checked because I had a bad cough. That is the

only symptom of PE that I had. They immediately drained my lungs. Told me

to stop Sprycel and they would discuss what I should go on. I was very

depressed about it and did not to again go on a different medication. I was

scared!!! We waited three weeks and I started on 400mg of Tasigna. I told

them I did not want to start with more because I was so afraid of the side

effects. the day I started I sat around my house just waiting for something

bad to happen. Nothing happened. Nothing at all. then after three weeks we

did a PCR test and I was at .0075. The doctor told me to go to 600mg. I

honestly feel that had I stayed on 400mg for awhile longer I would have

reached PCRU but who am I to know that.? so then within another three weeks

I was at 0% detection and a 5 log reduction which is really really good (I

am told)

But the best part to all of this is I have hardly any side effects.

I am normal. except for a few things (I will list them for you) that I have

learned to live with.

My eyebrows and eyelashes came back when I went on Sprycel. And more hair

grew in.

On Tasigna I have lost a lot of hair but it just thins out here and there. I

have always had very thick hair so I am fortunate. But It grows back in. I

can always see new growth. so it comes and goes. I do not get as tired as I

was but I still do get tired and try to rest. I think a lot of it is my

age--I am 67. I did put on 15 lbs but I can control that too. I am not big

on exercising and I know that if I would start I could lose some of it. I

have some strange pain in some of my toes sometimes but not enough to

complain about. My quality of life is fabulous as compared to when I was on

the other two medications.

I take no other medications! none! just my Tasigna. So I am fortunate there

too. I juice every morning and have coffee about 9am. then I take 200mg (one

pill) at about 11am. then I wait till about 12:30 to eat lunch. then I can

eat all day--I am a grazer. Then before I go to sleep I take my other 400mg

(2 pills). I can take them right before I lay down and it does not bother

me. Aside from takijng the pills I would not even know that I have CML.

So I am saying to you--give it a try!!!!!

How old are you and how long have you had CML?

do you have any other health problems?

I hope this helped.

Sharon

_____

From: [mailto: ] On Behalf Of

vegasrnjen@...

Sent: Monday, October 04, 2010 7:18 AM

Subject: [ ] tasigna help or suggestions!!!!!

Hey all-

I might be switching to Tasigna due to fluid overload and reoccurring PE

in which I had a thorencentsis on Friday. They removed 1.3 Liters and I can

still fill that I have some more on board. Having a echo today. Dr. Mauro

in OSHU (per email) feels it might be time for a drug holiday and switch. I

an nervous about it as I have been PCRU on Spyrcel for 2.5 years. Athough I

have had numerous side effects with Gleevec and Spyrcel including ALL of

the non-life threatening ones. Fatigue and bone/muscle pain being the most

annoying ones. De pigmentation of my skin and hair, SOB, edema, nausea, and

such.....

What are some side effects that people suffer with on Tasigna? I have read

certain things about " fasting " and hair loss? Can anyone provide me with

maybe your experience with it. I am hoping that my PCR will remain

undetectable....Glad we have choices but makes me nervous to have to move

onto the

next drug....

I don't know why I can just reduce the drug dose since I have had such a

good response???

Thanks in advance for any suggestions!

RN

Wife and mother of 3 (14,11,9)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since

[Guest guest]

Hi I'm Melody I was dx at the end of June and put on Tasigna 800mg a day. I had

side effects however, they are mostly a faint memory. I feel better than I have

in a couple of years. The pain in my hips and breast bone(I had thought was

fibromyalgia) is gone. The lady who cuts my hair says it has thinned. I have a

rash that looks like goose bumps on my arms and chest it dosn't itch. My head

does itch some not sure why. I still have some fatigue, however, I had it

before the Tasigna as it is a common with fibromyalgia, I believe it has

improved overall. That has been my experience. Thank you all who post often I

have learned much from you all.

>

> Hey all-

> I might be switching to Tasigna due to fluid overload and reoccurring PE

> in which I had a thorencentsis on Friday. They removed 1.3 Liters and I can

> still fill that I have some more on board. Having a echo today. Dr. Mauro

> in OSHU (per email) feels it might be time for a drug holiday and switch. I

> an nervous about it as I have been PCRU on Spyrcel for 2.5 years. Athough I

> have had numerous side effects with Gleevec and Spyrcel including ALL of

> the non-life threatening ones. Fatigue and bone/muscle pain being the most

> annoying ones. De pigmentation of my skin and hair, SOB, edema, nausea, and

> such.....

>

> What are some side effects that people suffer with on Tasigna? I have read

> certain things about " fasting " and hair loss? Can anyone provide me with

> maybe your experience with it. I am hoping that my PCR will remain

> undetectable....Glad we have choices but makes me nervous to have to move onto

the

> next drug....

>

> I don't know why I can just reduce the drug dose since I have had such a

> good response???

>

> Thanks in advance for any suggestions!

> RN

> Wife and mother of 3 (14,11,9)

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since

>

>

>

[Guest guest]

My husband has been on Tasgina since Feb. '08.  He was DX in May '06. Was on

Gleevec for 2 weeks and couldn't tolerate, so he was switched to Dasatnib. He

remained on this until Dec.'08.  He had to come off becaused he built up fluid

around his right lung.  Drs removed fluid 2 times.  He then went on Tasigna in

'08.  Side effects are few for him.  He had white hair and now it has turned

back to the color of his youth (black) no thinning.  He has some muscle aches

which drs think come from polio he had when he was 3 yrs. old.(now the ripe old

of 62)  He is retired and stays busy all day long every day.  We thank God

each day for what He is doing in his life with cml.

From: melodyhahn <Melodyhahn@...>

Subject: [ ] Re: tasigna help or suggestions!!!!!

Date: Monday, October 4, 2010, 8:18 PM

 

Hi I'm Melody I was dx at the end of June and put on Tasigna 800mg a day. I had

side effects however, they are mostly a faint memory. I feel better than I have

in a couple of years. The pain in my hips and breast bone(I had thought was

fibromyalgia) is gone. The lady who cuts my hair says it has thinned. I have a

rash that looks like goose bumps on my arms and chest it dosn't itch. My head

does itch some not sure why. I still have some fatigue, however, I had it before

the Tasigna as it is a common with fibromyalgia, I believe it has improved

overall. That has been my experience. Thank you all who post often I have

learned much from you all.

>

> Hey all-

> I might be switching to Tasigna due to fluid overload and reoccurring PE

> in which I had a thorencentsis on Friday. They removed 1.3 Liters and I can

> still fill that I have some more on board. Having a echo today. Dr. Mauro

> in OSHU (per email) feels it might be time for a drug holiday and switch. I

> an nervous about it as I have been PCRU on Spyrcel for 2.5 years. Athough I

> have had numerous side effects with Gleevec and Spyrcel including ALL of

> the non-life threatening ones. Fatigue and bone/muscle pain being the most

> annoying ones. De pigmentation of my skin and hair, SOB, edema, nausea, and

> such.....

>

> What are some side effects that people suffer with on Tasigna? I have read

> certain things about " fasting " and hair loss? Can anyone provide me with

> maybe your experience with it. I am hoping that my PCR will remain

> undetectable....Glad we have choices but makes me nervous to have to move onto

the

> next drug....

>

> I don't know why I can just reduce the drug dose since I have had such a

> good response???

>

> Thanks in advance for any suggestions!

> RN

> Wife and mother of 3 (14,11,9)

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since

>

>

>

[Guest guest]

I have far fewer side effects with Tasigna than I did with Gleevec and

Sprycel.

I have intermittent bouts of queasiness, itchy scalp and one other thing

that might be due to Tasigna and might not:: I get these weird little lumps

here and there under the skin. They last a couple weeks then go away, except

for one on my calf. Is that weird or what?

Anyway, bottom line is, I hope it never quits working because it's really

given me a second shot at an energetic, productive life. With Gleevec I was

just sleeping my life away. Sprycel, less so, but still too much. I'd go to

sleep in the daytime and when I woke up I felt like I had the flu. Ugh!

I get bone pain in my shins and feet, but my doc suggested that might be due

to something else -- gout!!

I sure hope it works for you, . My doc told me it is becoming the

first-line drug for CML and I can see why!

Best,

Oh! p.s. I did have kind of a dark cloud about three months into Tasigna. I

felt pretty bad, then it just passed. I had a few acupuncture treatments,

and maybe that helped.

On Mon, Oct 4, 2010 at 7:17 AM, <vegasrnjen@...> wrote:

>

>

> Hey all-

> I might be switching to Tasigna due to fluid overload and reoccurring PE

> in which I had a thorencentsis on Friday. They removed 1.3 Liters and I can

>

> still fill that I have some more on board. Having a echo today. Dr. Mauro

> in OSHU (per email) feels it might be time for a drug holiday and switch. I

>

> an nervous about it as I have been PCRU on Spyrcel for 2.5 years. Athough I

>

> have had numerous side effects with Gleevec and Spyrcel including ALL of

> the non-life threatening ones. Fatigue and bone/muscle pain being the most

> annoying ones. De pigmentation of my skin and hair, SOB, edema, nausea, and

>

> such.....

>

> What are some side effects that people suffer with on Tasigna? I have read

> certain things about " fasting " and hair loss? Can anyone provide me with

> maybe your experience with it. I am hoping that my PCR will remain

> undetectable....Glad we have choices but makes me nervous to have to move

> onto the

> next drug....

>

> I don't know why I can just reduce the drug dose since I have had such a

> good response???

>

> Thanks in advance for any suggestions!

> RN

> Wife and mother of 3 (14,11,9)

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since

>

>

[Guest guest]

O!!! YIPPEEE!!!

Number 1356 in the Zero Club

Zavie

Sorry I missed him on your last post.

Zavie

From: [mailto: ] On Behalf Of george

pinkard

Sent: October-04-10 11:06 PM

Subject: Re: [ ] Re: tasigna help or suggestions!!!!!

My husband has been on Tasgina since Feb. '08. He was DX in May '06. Was on

Gleevec for 2 weeks and couldn't tolerate, so he was switched to Dasatnib. He

remained on this until Dec.'08. He had to come off becaused he built up fluid

around his right lung. Drs removed fluid 2 times. He then went on Tasigna in

'08. Side effects are few for him. He had white hair and now it has turned

back to the color of his youth (black) no thinning. He has some muscle aches

which drs think come from polio he had when he was 3 yrs. old.(now the ripe old

of 62) He is retired and stays busy all day long every day. We thank God each

day for what He is doing in his life with cml.

From: melodyhahn <Melodyhahn@... <mailto:Melodyhahn%40> >

Subject: [ ] Re: tasigna help or suggestions!!!!!

<mailto:%40>

Date: Monday, October 4, 2010, 8:18 PM

Hi I'm Melody I was dx at the end of June and put on Tasigna 800mg a day. I had

side effects however, they are mostly a faint memory. I feel better than I have

in a couple of years. The pain in my hips and breast bone(I had thought was

fibromyalgia) is gone. The lady who cuts my hair says it has thinned. I have a

rash that looks like goose bumps on my arms and chest it dosn't itch. My head

does itch some not sure why. I still have some fatigue, however, I had it before

the Tasigna as it is a common with fibromyalgia, I believe it has improved

overall. That has been my experience. Thank you all who post often I have

learned much from you all.

--- In <mailto:%40> , vegasrnjen@...

wrote:

>

> Hey all-

> I might be switching to Tasigna due to fluid overload and reoccurring PE

> in which I had a thorencentsis on Friday. They removed 1.3 Liters and I can

> still fill that I have some more on board. Having a echo today. Dr. Mauro

> in OSHU (per email) feels it might be time for a drug holiday and switch. I

> an nervous about it as I have been PCRU on Spyrcel for 2.5 years. Athough I

> have had numerous side effects with Gleevec and Spyrcel including ALL of

> the non-life threatening ones. Fatigue and bone/muscle pain being the most

> annoying ones. De pigmentation of my skin and hair, SOB, edema, nausea, and

> such.....

>

> What are some side effects that people suffer with on Tasigna? I have read

> certain things about " fasting " and hair loss? Can anyone provide me with

> maybe your experience with it. I am hoping that my PCR will remain

> undetectable....Glad we have choices but makes me nervous to have to move onto

the

> next drug....

>

> I don't know why I can just reduce the drug dose since I have had such a

> good response???

>

> Thanks in advance for any suggestions!

> RN

> Wife and mother of 3 (14,11,9)

> CML 5/13/05

> Gleevec 800mg until 8/07

> Sprycel 100mg since

>

>

>

[Guest guest]

G'day ,

I've been on Tasigna for 2 years and love it. I was on Glivec for 8 months

with many breaks due to severe migraines, had oedema, weight gain, horrible

fatigue etc etc. I had a 4 week break from Glivec and then started Tasi on

400mg once a day for a week and then 2nd nightly for a week and then went

on to full 800mg without any issues. Like Sharon I still get tired and I had

a heck of a lot of other issues in my life after starting Tasi when my

husband had a stroke - I can't imagine how I would have coped if I had still

been on Glivec. Since February I've been taking 400mg a day and 200mg in the

evening second daily, but will be pushing to reduce that also if my next PCR

is still the same.

Yes, you do worry initially about the QT issue and whether you will drop

dead, but I'm still here! No migraines, lost 15kg in weight that I had put

on, no periorbital odema, heaps more energy and I've been lucky with no hair

loss, but my skin is a lot drier, but that could be due to menopause also (I

m 53 and had a hysterectomy and 1 ovary removed 7 years ago). My main issue

with Tasi is it caused a stomach ulcer (now on Somac) and it caused several

major flare ups of my Crohns disease, whereas Glivec actually helped it! I

also find it difficult to go to sleep (Tasi can cause insomnia) - I was

always a night owl, but 1-1.30am is a common time or later for me to go to

sleep which does at times cause sleep deprivation, especially when my body

clock tells me I have to wake up to take my meds.

The fasting is a real pain, I take mine around 7.30 -8.30am and eat an hour

later. When I take an evening dose, I take around 6pm - as long as you don't

take less than 8 hours apart and antacids 2 hours within taking Tasigna.

You also need to have an ECG prior to starting Tasi and a week or so after

commencement and then preferably yearly ones. I started Tasi in Aug 08 and

my next PCR in Nov was zero and the last one was 0.000%.

I'm sure it would be nerve racking to have to change again and I hope it

works out for you. One great thing about Tasi is I have a tan in summer,

although I do try to be careful and use sunscreen and wear a hat when I'm

out in the sun. I went onto Tasi instead of Sprycel as I'm an asthmatic so

it was never in the mix for me.

Cheers

 -- [ ] tasigna help or suggestions!!!!!

Hey all-

I might be switching to Tasigna due to fluid overload and reoccurring PE

in which I had a thorencentsis on Friday. They removed 1.3 Liters and I can

still fill that I have some more on board. Having a echo today. Dr. Mauro

in OSHU (per email) feels it might be time for a drug holiday and switch. I

an nervous about it as I have been PCRU on Spyrcel for 2.5 years. Athough I

have had numerous side effects with Gleevec and Spyrcel including ALL of

the non-life threatening ones. Fatigue and bone/muscle pain being the most

annoying ones. De pigmentation of my skin and hair, SOB, edema, nausea, and

such.....

What are some side effects that people suffer with on Tasigna? I have read

certain things about " fasting " and hair loss? Can anyone provide me with

maybe your experience with it. I am hoping that my PCR will remain

undetectable....Glad we have choices but makes me nervous to have to move

onto the

next drug....

I don't know why I can just reduce the drug dose since I have had such a

good response???

Thanks in advance for any suggestions!

RN

Wife and mother of 3 (14,11,9)

CML 5/13/05

Gleevec 800mg until 8/07

Sprycel 100mg since