Re: Gleevec side effects/Going back to work

[Guest guest]

>Hi ,

I have almost exactly the same symptoms as you--including the

numbers, though my wbc has never gotten much below 16,000. My

Philadelphia chromosome is gone and I am " on the verge " of molecular

remission as well, so doing well on 600 mg of Gleevec per day after

just over a year on it.

I find the fatigue and stomach pain my most troubling symptoms.

Lately the eye puffiness has been quite a bit worse, and quite a bit

of blurriness of my vision too. I take a diuretic twice a day and

that really seems to help, along with keeping my BP under control

(combined with ACE inhibitor).

I wonder about what the end point of these symptoms is, or if they

just go on forever??? If so that is okay--they all seem quite

manageable, for the most part. I have the rash primarily on my arms

and legs--just use regular lotion and it seems to help. I take

Benadryl 50 mg nightly for sleep, and it seems to keep things down to

a dull roar rash-wise during the day, too. After a while the

sleepiness does get better.

I am applying for a job tomorrow after 8 months off to concentrate on

feeling better. I have applied for SS Disability but I can't just

watch my family starve while waiting to see if it will come through,

and if I am offered a job, I will take it even though I have

questions about stamina. The good news is that the job is in

afternoon/evening, which are my best hours of the day. THe bad news

is that I will miss my boys! I will barely get to see them at all if

I work--the hours are 3-11:30 Sun-Thurs. I wlil have Friday and

Saturday nights off, which will be good, but still I will miss them.

I know they are big enough to do without " mom " all the time, but I my

12 year old has had a rough transition into middle school with

hospitalization for stabilization of antidepressant/antianxiety meds

and suicidal ideation, so I do worry about him. He is a very

sensitive little guy and it has taken a lot of nurturing to get him

feeling good again. I would hate to see it go down the tubes, and I

guess no job is worth that. I will have to pray about it and

thoughtfully consider the job offer, if it comes.

Thanks for all the support and information from everybody. This

group has been a real source of inspiration for me during some dark

months. I mostly just " lurk " but it has been mostly because of

severe depression rather than a lack of things to say.

Thanks again...Good Luck with theGleevec side-effects.

Vicki

> I'd like to know what everyone experiences as they continue on

Gleevec. MY doctor is

> convinced I'm in remission (wbc is 4,500 down from only 39,000 -

but the Bone Marrow test

> confirmed the presence of the Philadelphia Chromosone)

>

> I have swelling around the eyes and cheeks.....I take a Lasix type

pill when it becomes bad.

>

> I have irritable bowel sydrome......(may have had this before

Gleevec but now it's worse)

>

> I am very tired (slightly anemic....10.3)....and have all kinds of

aches and pains which I can't

> differentiate from the normal arthritis.

>

> And muscle cramping in my legs and hands (even with potassium

supplement). The doc

> suggested tonic water to alleviate this.

>

> I also have non-specific bumps, or hives, in various places that

itch? Benedry seems to help

> but makes me sleepy.

>

> So am I a complainer or amongst you?

>

> in Arizona

>