Re: Tasigna questions

December 2, 2009

Hi Sharon S

Lots of questions. I can answer some of them but not all

I take 3 pills (600mg) 2 in the morning and l at night.

I take the morning one two hours after I have had coffee or breakfast.

And I take the other about 11pm when I go to bed at least two to three hours

after I ate also.

They do not bother me at all. Not one bit. I can lay right down and go to

sleep. I do take a full glass of water with them each time.

The capsules are about the size of a Tylenol capsul.

Easy to swallow.

I do not take any other medications at all so I really do not know what you

can and can not take. I take vit D and calcium. That is it.

I have been taking it for almost two years (March) no side effect except

thinning of hair. I am getting of that!!! I wish it would stop.

Yes I had EKG's in the beginning and now I have them every 3 to 6 months.

My Weight gain was an issue but now it seems that if I watch what I eat I

can lose weight. And exercise really helps.

QT has always been normal.

I have a PCR every 6 months. Been at 0 percent with a 5 log reductin for

over a year.

My son is a diabetic. He is almost 40 and got it when he was 16. I am sure

you can take the meds but I would ask your doctor about that.

What are you on now and why are you thinking of Tasigna???

Sharon T

_____

From: [mailto: ] On Behalf Of

Serenity

Sent: Tuesday, December 01, 2009 8:31 PM

Subject: [ ] Tasigna questions

Hello,

I was wondering if those taking Tasigna would be wiling to share some info

with me..

How Big are the capsules? Smaller/bigger than tylenol capsule?

Can you take it in the middle of the night and lay down afterwards or do you

have to sit upright after taking it? Like a 3:30 A.M. and 3:30 P.M.

schedule.

I read you can't take fungal meds?..What about Diflucan type meds for yeast

infections? Also read No sleeping pills? Does that mean no Ambien CR then?

Also said can have issues if diabetic? I am..Is that an issue? What meds do

you take for these issues?

Is everyone having to do the ECG tests like the info I read says?

Before starting drug

7 days after taking the drug

after every dose change

periodically throughout treatment

How many here have had the QT prolongation? Or other serious issues? Any

other side effects? weight gain an issue?Swelling,face rash,diarhea,eye

pain,anemia,nausea etc?

Anything anyone could share would be greatly appreciated..

Thanks

SharonS

December 2, 2009

Sharon S:

I was on Tasigna for two years. I did have EKGs the first week

or so and twice when I had issues. I had no issues standing or

lying down.

I did get elevated blood pressure, serous constipation and fatigue.

For me, I found taking Tasigna with Metamucil each morning

and mild exercise to sweat out any excess toxins were help-

ful to me. Like Sprycel, Tasigna is more powerful than Gleevec

so it is important to listen to your body, report any problems

to your oncologist and live a healthy life.

Let me know if you have any specific questions.

Matt

Florida

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In a message dated 12/1/2009 11:31:24 P.M. Eastern Standard Time,

serenitywon@... writes:

Hello,

I was wondering if those taking Tasigna would be wiling to share some info

with me..

How Big are the capsules? Smaller/bigger than tylenol capsule?

Can you take it in the middle of the night and lay down afterwards or do

you have to sit upright after taking it? Like a 3:30 A.M. and 3:30 P.M.

schedule.

I read you can't take fungal meds?..What about Diflucan type meds for

yeast infections? Also read No sleeping pills? Does that mean no Ambien CR

then? Also said can have issues if diabetic? I am..Is that an issue? What meds

do you take for these issues?

Is everyone having to do the ECG tests like the info I read says?

Before starting drug

7 days after taking the drug

after every dose change

periodically throughout treatment

How many here have had the QT prolongation? Or other serious issues? Any

other side effects? weight gain an issue?Swelling,How many here haveHow many

here haHow many here h

Anything anyone could share would be greatly appreciated.A

Thanks

SharonS

December 2, 2009

Sharon,

I was hoping you would respond..I knew you took Tasigna but don't know who

else does..So thank you..

I was DX in May 08 and started on Gleevec 400 then moved to 600mg..Had a ton of

side effects that became unmanagable (bowel incontenance was just one).My PCR

started going the wrong direction.

In July of 09 I switched to Sprycel.I have had some side effects but nothing

completely horendous.I have been having white stools lately.The DR. is concerned

it may be the drug or something like Liver/kidney.I did more labs(more in depth)

and were meeting again next week.I have been having alot of hormonal issues as

well.I used to have night sweats when I first got Dx but once I started

treatment they went away.I have been getting them back now,running low grade

fever,ALOT of facial hair(I'm female and need a good shave)never an issue

before,weight gain(30 pounds),chronic yeast infections,face rash,severe eye

pain(dryness, now on meds),enlarged glands,achne(never had before).

My DR said to look into Tasigna as that is my last option if Sprycel needs to be

D/C.I am researching it. Not sure it is even an option for me with all my issues

and meds that need to be avoided and time frame that it needs to be taken on..

I have had wls(weight loss surgery) and am banded(lapband) over that..I have a

very tiny opening for pills to go through.If they are large they sit on top of

the stomach opening until they disolve and then I have increaded heart burn and

get ulcers.I have chronic gastritis and GERD.I am not supposed to take any pills

larger than a baby tylenol.I am even struggling with Sprycel as it is large.Some

nights I have acid reflux so bad I have to sleep upright and I take meds twice a

day for this..I am taking a chance on this med.I have only been on it for just

now 4 months and I am trying to avoid burning a whole in my tiny

pouch..lol..Gleevec I took the tiny 100mg tablets and had no trouble physically

getting those through the hole..Just a whole slew of other side effects.

I am diabetic and with the WLS I eat every 2 hours or at the very least drink a

protein shake to keep my sugar levels stable.I don't have a period during the

day where I don't eat or drink for the needed 3 hour gap for Tasigna.Especially

with them having to be taken every 12 hours..That just seems pretty difficult to

do.I can handle a middle of the night dose but not sure about the second

dose..lol

Oh well,hopefully it won't be an issue and I won't have to switch drugs

again..Thanks again for taking the time to answer my questions..

Happy Holidays Be safe and take care

SharonS

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

What are you on now and why are you thinking of Tasigna???

Sharon T

December 2, 2009

Sharon my experience with Gleevec was awful-terrible side effects. Lived on

Imodium. Got lots of colds and then a terrible terrible rash all over my

body. Lost lots of hair too.

I was only on it for 9 months then they switched me to Spryel. While on

Gleevec I never had a PCR test. Just the BMA for fish and cytogetics. I was

always good there.

Sprycel was much much better but I still lived on Imodium but could control

the side effects pretty much. But never felt good. After three years I

started getting lots of colds, enlarged lymph nodes, low grade fever then

finally had plural effusion and had to have my lungs drainged. They took me

off Sprycel and put me on Tasigna and Sharon-the difference is like day and

night. Fortunately I do not have any other health issues. I am 66 and pretty

darn healthy. Like I said PCRU for almost two years. The pills are about

the same size as a Tylenol capsul and they have the capsule so they slide

down easy. Seriously talk to your doctor about switching. Quality of life

is extremely important to me and I now have it. For how long? I don't kow

but I take it one day at a time. Since I started Tasigna I have not been

sick at all---not even a cold!!! I guess my immune system is good and it

must be the Tasigna. I am very very happy that I switched. And I like you

was very scared.

What ever you decide I wish you all the luck in the world. I am headed down

south to Mission Viejo to spend about a week with my sister. My husband and

I are going to be her support for her 5th chemo treatment on Friday. She was

diagnosed with Ovarian Cancer about 6 months ago and is doing very very

well. They can't seem to find any trace of cancer in her body after 4

treatments. We pray a lot and she has a great support group and family. I

watched her go through all that she did and I thank God that I am well.

Happy Holidays to you and yours too.

Sharon T

_____

From: [mailto: ] On Behalf Of

Serenity

Sent: Wednesday, December 02, 2009 12:32 PM

Subject: Re: [ ] Tasigna questions

Sharon,

I was hoping you would respond..I knew you took Tasigna but don't know who

else does..So thank you..

I was DX in May 08 and started on Gleevec 400 then moved to 600mg..Had a ton

of side effects that became unmanagable (bowel incontenance was just one).My

PCR started going the wrong direction.

In July of 09 I switched to Sprycel.I have had some side effects but nothing

completely horendous.I have been having white stools lately.The DR. is

concerned it may be the drug or something like Liver/kidney.I did more

labs(more in depth) and were meeting again next week.I have been having alot

of hormonal issues as well.I used to have night sweats when I first got Dx

but once I started treatment they went away.I have been getting them back

now,running low grade fever,ALOT of facial hair(I'm female and need a good

shave)never an issue before,weight gain(30 pounds),chronic yeast

infections,face rash,severe eye pain(dryness, now on meds),enlarged

glands,achne(never had before).

My DR said to look into Tasigna as that is my last option if Sprycel needs

to be D/C.I am researching it. Not sure it is even an option for me with all

my issues and meds that need to be avoided and time frame that it needs to

be taken on..

I have had wls(weight loss surgery) and am banded(lapband) over that..I have

a very tiny opening for pills to go through.If they are large they sit on

top of the stomach opening until they disolve and then I have increaded

heart burn and get ulcers.I have chronic gastritis and GERD.I am not

supposed to take any pills larger than a baby tylenol.I am even struggling

with Sprycel as it is large.Some nights I have acid reflux so bad I have to

sleep upright and I take meds twice a day for this..I am taking a chance on

this med.I have only been on it for just now 4 months and I am trying to

avoid burning a whole in my tiny pouch..lol..Gleevec I took the tiny 100mg

tablets and had no trouble physically getting those through the hole..Just a

whole slew of other side effects.

I am diabetic and with the WLS I eat every 2 hours or at the very least

drink a protein shake to keep my sugar levels stable.I don't have a period

during the day where I don't eat or drink for the needed 3 hour gap for

Tasigna.Especially with them having to be taken every 12 hours..That just

seems pretty difficult to do.I can handle a middle of the night dose but not

sure about the second dose..lol

Oh well,hopefully it won't be an issue and I won't have to switch drugs

again..Thanks again for taking the time to answer my questions..

Happy Holidays Be safe and take care

SharonS

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

<onthewtr@...> wrote:

What are you on now and why are you thinking of Tasigna???

Sharon T

December 2, 2009

Hi Sharon,

Sorry to hear of your problems on Sprycel. I have been on Tasigna for 15

months and have done very well on it in comparison to the side effects of

Glivec. My main concern for you with Tasigna is the gut and liver problems

that can occur. Tasi is hard on the stomach and I developed gastric ulcers

because of the acid environment it has to be absorbed in and can and does

cause reflux. Tasigna is renowned for increasing blood sugar and liver

enzyme levels, although mine have always been stable and not a problem.

Others have required breaks due to the high levels. I didn't have any side

effects for 12 months and then developed the stomach ulcer/reflux and

constant aches and pains in my joints and increasing fatigue. I have low

grade Crohns disease - Glivec was good for it, Tasigna is hard on it. The

side effects we each individually experience are frustrating! My hair - I

have a thick mop which has never changed and has to be cut every 5 weeks to

keep it in shape and I have lost 9kg since I swapped to Tasigna which has

been great. The fasting is a pain, as yes you effectively cannot eat for 3

hours twice a day, however I drink lots of water in this period. I dislike

taking Tasi before bed as I find if I don't lie on my ® side I will

experience reflux.

With Sprycel - have you had a drug break to reduce the side effects? What is

your PCR? I hope you can work your way through these issues as it must be

awful for you to be experiencing them.

Regards,

From: [mailto: ] On Behalf Of

Serenity

Sent: Thursday, 3 December 2009 7:32 AM