Re: Aliza from rochester n.y.

[Guest guest]

>

> Hello-

>

> I would encourage you to seek out a CML specialist in your area.

Regular

> oncologist simply just are not on the top of CML as a cancer. You

would be

> much better off with someone who was on the cutting edge of the

disease.

>

> Yes, for me, Spyrcel has given me back my life. While on Gleevec,

I was

> just exsisting....I was not living my life. The fatigue and

problems with

> gastritis where a constant battle every day and night. I couldn't

work, shop,

> clean, be a wife or raise my children. I has no life. I was eit

her, in the bed,

> on the sofa, in the bathroom, or in the hospital/ER/doctors

office. That

> was my life. I had every symptom imaginable with Gleevec

including daily pain,

> SOB, my strawberry blonde hair changed to white (all over my

body),

> indescribable fatigue, etc.

>

> I have been on Spyrcel since 9/07 and I have to say, for me, this

has been

> the ultimate blessing. I am alive again. I am not working but I

do volunteer

> at my children's school on days that I am feeling great. I am the

brownie

> leader for my 9 year olds Girl scout troop. I am able to go

places with my

> children now and be part of family instead of staying at home

while my hubby

> takes them. I can actually go to the mall with my pre-teen. I

can't walk

> around for hours like I used to before CML, but I can hold my own

for an hour or

> so. I can prepare dinner or do light housework and feel like I am

> contributing to the family. I have to still limit my activity and

if I do too much, I

> will still pay for it the next day but it simply isn't as bad as

before. I

> still have aches now and then and the gastritis is still a

bothersome to some

> degree. BUT, none of these symptoms are anything remotely like I

suffered with

> Gleevec. I too responded well with Gleevec, but just couldn't

tolerate the

> quality of life it gave me. I still appreciate all it did for

me. It is a

> wonderful drug. I still have pretty intense fatigue but I think I

always will

> with these drugs. The meds are working on a daily basis to fight

a battle

> for me so I will happily live with that. Oh, my white hair that

I got with

> Gleevec....Its growing back in as strawberry blonde now that I am

on

> Spyrcel. Go figure!!!! yep, the doctors are stumped too.

>

> I was so against switching drugs from all the reports of pleural

effusions

> on Spyrcel and I put it off for several months but I was starting

to develop so

> much fluid retention and actually had 2 bouts of pneumonia without

knowing

> it, that I figured I would give this a try. I lost 16 pounds of

nothing but

> fluid the first 9 days off Gleevec. No wonder I was so short of

breath all

> the time.

>

> Anyway, I am rambling on and on now but I guess I would say think

about what

> is best for you. Maybe talk to your doctor about switching if

your

> gastritis is really bad. I really don't suffer at all with that

like I did on

> Gleevec. I even take it as I am climbing into bed at night on an

empty stomach and

> it doesn't bother me. Could never dream of doing that with

Gleevec.

>

> Best wishes and I hope your symptoms get better.

> Hugs and Hope-

>

> 35

> CML 5/13/05

> Gleevec 800mg until 8/07

> Spyrcel 100 mg since 9/07

> Wife and mother of 3 (12,9,7)

>

>

>

>

> wow jenifer i'm so glad you're feeling good

quality of life is the most important thing I also returned back to

life after gleevec but, lately i've developed chest pain and extreme

tiredness and according to my oncologistmy insurance won't pay for

procrit untill i get a lower crit reading whitch i find insane

instead of treating while it makes sence to treat. how long have you

had cml?

well i hope you continue feeling well .actually feel even better and

thankx for the advice i'm totally ignorant about cml so all the

advice helps me become proactive.

aliza

[Guest guest]

>

> Hello-

>

> I would encourage you to seek out a CML specialist in your area.

Regular

> oncologist simply just are not on the top of CML as a cancer. You

would be

> much better off with someone who was on the cutting edge of the

disease.

>

> Yes, for me, Spyrcel has given me back my life. While on Gleevec,

I was

> just exsisting....I was not living my life. The fatigue and

problems with

> gastritis where a constant battle every day and night. I couldn't

work, shop,

> clean, be a wife or raise my children. I has no life. I was eit

her, in the bed,

> on the sofa, in the bathroom, or in the hospital/ER/doctors

office. That

> was my life. I had every symptom imaginable with Gleevec

including daily pain,

> SOB, my strawberry blonde hair changed to white (all over my

body),

> indescribable fatigue, etc.

>

> I have been on Spyrcel since 9/07 and I have to say, for me, this

has been

> the ultimate blessing. I am alive again. I am not working but I

do volunteer

> at my children's school on days that I am feeling great. I am the

brownie

> leader for my 9 year olds Girl scout troop. I am able to go

places with my

> children now and be part of family instead of staying at home

while my hubby

> takes them. I can actually go to the mall with my pre-teen. I

can't walk

> around for hours like I used to before CML, but I can hold my own

for an hour or

> so. I can prepare dinner or do light housework and feel like I am

> contributing to the family. I have to still limit my activity and

if I do too much, I

> will still pay for it the next day but it simply isn't as bad as

before. I

> still have aches now and then and the gastritis is still a

bothersome to some

> degree. BUT, none of these symptoms are anything remotely like I

suffered with

> Gleevec. I too responded well with Gleevec, but just couldn't

tolerate the

> quality of life it gave me. I still appreciate all it did for

me. It is a

> wonderful drug. I still have pretty intense fatigue but I think I

always will

> with these drugs. The meds are working on a daily basis to fight

a battle

> for me so I will happily live with that. Oh, my white hair that

I got with

> Gleevec....Its growing back in as strawberry blonde now that I am

on

> Spyrcel. Go figure!!!! yep, the doctors are stumped too.

>

> I was so against switching drugs from all the reports of pleural

effusions

> on Spyrcel and I put it off for several months but I was starting

to develop so

> much fluid retention and actually had 2 bouts of pneumonia without

knowing

> it, that I figured I would give this a try. I lost 16 pounds of

nothing but

> fluid the first 9 days off Gleevec. No wonder I was so short of

breath all

> the time.

>

> Anyway, I am rambling on and on now but I guess I would say think

about what

> is best for you. Maybe talk to your doctor about switching if

your

> gastritis is really bad. I really don't suffer at all with that

like I did on

> Gleevec. I even take it as I am climbing into bed at night on an

empty stomach and

> it doesn't bother me. Could never dream of doing that with

Gleevec.

>

> Best wishes and I hope your symptoms get better.

> Hugs and Hope-

>

> 35

> CML 5/13/05

> Gleevec 800mg until 8/07

> Spyrcel 100 mg since 9/07

> Wife and mother of 3 (12,9,7)

>

>

>

>

> wow jenifer i'm so glad you're feeling good

quality of life is the most important thing I also returned back to

life after gleevec but, lately i've developed chest pain and extreme

tiredness and according to my oncologistmy insurance won't pay for

procrit untill i get a lower crit reading whitch i find insane

instead of treating while it makes sence to treat. how long have you

had cml?

well i hope you continue feeling well .actually feel even better and

thankx for the advice i'm totally ignorant about cml so all the

advice helps me become proactive.

aliza