Re: (unknown) 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 either, 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)

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[Guest guest]

,

I was diagnosed in March 07 and I too switched from Gleevac (extreme toxicity)

to Sprycel in July 2007. I had the usual side affects such as Gastro and SOB so

I reduced the dose from 100 mg daily to 50 mg daily. I have gradually increased

to 80mg daily and in October 07 reached PCRU. I have continued to have anemia

and extreme fatigue so we reduced my dose to 75mg daily. Two weeks ago I went

in to see my onc because I just felt so fatigued I really couldn't function. He

did my CBC and my counts were good except my red count was low but actually up

from my last appointment. My PCR continues to be 00.0 undetectable. My onc

requested several other blood tests to check my B12, iron, thyroid, etc. to rule

out any other issue contributing to my extreme fatigue. He also suggested I

take a medication vacation until I came for my next appointment which would be

in two weeks to see if the Sprycel was the culprit. My next appointment is for

this Friday. I have felt so much

better these last two weeks off the Sprycel. I didn't realize how bad I felt

until I had some of my energy back. I have actually had a life and been able to

do things again. I really don't want to stop taking the Sprycel because my

response has been so good and the side effects are really not that bad except

the extreme fatigue. I'm hoping to lower my dose again but I'm not sure how low

will still maintain my complete response.

What dose are you on now? And to others ready this post, is anyone else

taking a lower than recommended dose of Sprycel and still having a good

response? My oncologist is very hesitant to go any lower than 75 mg daily.

Sprycel is still relatively new and I know they have already adjusted the

starting dose from 140mg daily to 100mg daily so who's to say if an even lower

dose might not be effective in some people. I am hoping to find a happy balance

so that I can stay on Sprycel, have a complete response but also have a better

quality of life. Am I asking for too much?

Thanks for any advice,

Patti