Re: can't seem to cope today...

[Guest guest]

Cheryl-

I don't know much about you but I can assure you, you are not alone. I

have been on meds for almost 5 years now (wow, 5 years!!!) just occurred to

me!! And I still have days, sometimes weekly that I cant cope. It is a

life long road so take it day by day. Listen to your body, when you are

tired, rest.....

I have had a strong reaction to meds and still suffer with extreme fatigue

and bone and muscle aches on a daily basis. Don't give up hope and don't

assume every little ache or pain is meds not working or Leukemia getting

worse. Not easy to do but you'll drive yourself crazy if you don't!

We are all here if you ever need to talk. I thing writing and talking to

others who not only can say we know what you mean but we live it day to

day. We are walking in your shoes and we are always here if you need someone

to talk too.

I wish you much strength. Remember to keep your chin up and always have

HOPE. Count on family and friends, they want nothing more then to be there

for you.

Best wishes and have a better rest of your day!

hugs!!!

RN

CML 5/13/05

gleevec 800 mg until 9/07

sprycel 100mg since!

wife and mommy to 3 (14,11,9)

In a message dated 1/11/2010 12:06:35 P.M. Central Standard Time,

rcd1929@... writes:

Well, for sure, 800mg is a lot to be on, I've been there. But started on

600 in the trial, and as it did not work well for me, they upped it to 800.

But as I remember , things did get better as my system adjusted to the

higher dose. Everyone is different, but I think most agree the side effects

seem to diminish in time. Keep in mind this drug is working, things will

get better, and life will not always be so severe as it is right not. And

believe it or not, taking 800 Gleevec is better than what they used to give

us, and is also better than the alternative. (unless of course the

alternative is another drug,) So, hang in there, and get plenty of rest, drink

lots of water, eat food with your pills, and don't lie down right after taking

Gleevec.

It took me over two months to accept the side effects and get on with my

life, others it takes longer. Gleevec is better than a BMT, but I'm sure if

your side effects don't go away, your doctor may consider putting you on

another drug. Give Gleevec a chance though, grin and bear it, and don't be

discouraged, these side effects may be the proof that the drug is working.

Good luck, Bobby

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

o2/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

#840 Zavie's Zero Club

From: thornton_cheryl <_thornton_cheryl@thornton_

(mailto:thornton_cheryl@...) >

Subject: [ ] can't seem to cope today...

_@..._ (mailto: )

Date: Monday, January 11, 2010, 9:50 AM

just looking for some words of encouragement today...it's my first day

home alone since the holidays and I can't seem to get my brain out of panic

mode...I have alot of bone pain today and had the night sweats last

night...I'm hoping this doesn't mean that the drugs have stopped working

already...does anyone know if this should still be happening..I' m on 800 mg

Gleevac/day and the dr. says I am responding well...trying to breathe deeply

and

shut my brain off but it's not working

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

[Guest guest]

Well, for sure, 800mg is a lot to be on, I've been there.  But started on 600

in the trial, and as it did not work well for me, they upped it to 800.  But as

I remember , things did get better as my system adjusted to the higher dose. 

Everyone is different, but I think most agree the side effects seem to diminish

in time.  Keep in mind this drug is working, things will get better, and life

will not always be so severe as it is right not.  And believe it or not, taking

800 Gleevec is better than what they used to give us, and is also better than

the alternative. (unless of course the alternative is another drug,)  So, hang

in there, and get plenty of rest, drink lots of water, eat food with your pills,

and don't lie down right after taking Gleevec.

It took me over two months to accept the side effects and get on with my life,

others it takes longer.  Gleevec is better than a BMT, but I'm sure if your

side effects don't go away, your doctor may consider putting you on another

drug.  Give Gleevec a chance though, grin and bear it, and don't be

discouraged, these side effects may be the proof that the drug is working. 

Good luck, Bobby

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

o2/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

#840 Zavie's Zero Club

From: thornton_cheryl <thornton_cheryl@...>

Subject: [ ] can't seem to cope today...

Date: Monday, January 11, 2010, 9:50 AM

 

just looking for some words of encouragement today...it's my first day

home alone since the holidays and I can't seem to get my brain out of panic

mode...I have alot of bone pain today and had the night sweats last night...I'm

hoping this doesn't mean that the drugs have stopped working already...does

anyone know if this should still be happening..I' m on 800 mg Gleevac/day and

the dr. says I am responding well...trying to breathe deeply and shut my brain

off but it's not working

[Guest guest]

Cheryl,

Hang in there! You can do this...one step at a time...breathe.

One suggestion re the bone pain. (I went through a bout of this myself)...if the

docs think you are responding well, then that means the drug is going to work

and knocking down the bad cells. I used to visualize the drugs in my bones

blowing up all the bad cells--the pain was merely caused by the little bombs

going off and it would pass. It didn't make the pain go away, but it seemed to

make it more managable to me.

Hugs,

Beth

[ ] can't seem to cope today...

 

just looking for some words of encouragement today...it's my first day home

alone since the holidays and I can't seem to get my brain out of panic mode...I

have alot of bone pain today and had the night sweats last night...I'm hoping

this doesn't mean that the drugs have stopped working already...does anyone know

if this should still be happening..I'm on 800 mg Gleevac/day and the dr. says I

am responding well...trying to breathe deeply and shut my brain off but it's not

working

[Guest guest]

I've had quite a lot of that lately too, both the sweats and the bone pain.

Today for the first time in about three or four days I feel pretty normal. I

slept almost solidly for three days! I do think we have these peaks and

valleys, or at least plateaus and valleys, lol. What helps with the bone

pain, Cheryl? Does Ibuprofen make a dent? If mine gets too thorny I'll take

an oxycodone but inevitably if I do that more than a day I have kind of a

follow-up blue period that's not worth the bother.

If your labs look good, that's much to celebrate. Take it easy on yourself,

rest as much as you need to. My favorite prescription: Watch

side-splittingly funny or otherwise distracting DVDs. And stay in touch with

THIS GROUP. For me, this group has brought encouragement, hope, even lots of

laughs!

You folks who are smarter than me, what do you say? Are the sweats something

to sweat?

On Mon, Jan 11, 2010 at 6:50 AM, thornton_cheryl

<thornton_cheryl@...>wrote:

>

>

> just looking for some words of encouragement today...it's my first day home

> alone since the holidays and I can't seem to get my brain out of panic

> mode...I have alot of bone pain today and had the night sweats last

> night...I'm hoping this doesn't mean that the drugs have stopped working

> already...does anyone know if this should still be happening..I'm on 800 mg

> Gleevac/day and the dr. says I am responding well...trying to breathe deeply

> and shut my brain off but it's not working

>

>

>

[Guest guest]

Cheryl You Can DO It. You just said the magic word that your home alone. I am

into this thing for 11 years already, and I find my mind doing all kinds of

things to me when I am home alone with nothing to do.

I found that when I was having that bone pain in the beginning, it was told

to me that it was the Gleevec doing its job and killing off the bad cells.

After all this time, I still get a lot of joint pain and foot spasms etc. The

joint pain I get now, is mostly from my Arthritis.

Then there are days that I feel fine.

The mind can do crazy things to you, and make you feel things too. The

doctor said you are responding well. I felt all these things on only 400mg.

This is very common with people on higher doses. I cannot imagine what it feels

like to be on 800mg.

Try to find something to keep you busy and enjoyable to take your mind off

of everything.

I always found peace in praying in a nice quiet atmosphere, and to this day

I still make that time every morning before I start my day.

My husband knows not to even talk to me, until I am done with my prayer time and

bible study. I always start my day off like that with what I call God And

Coffee Hour. Please post when you feel like this, and someone will help you get

through the present mood your in. Remember we have all been through this too.

God Bless You

A.

>

> just looking for some words of encouragement today...it's my first day home

alone since the holidays and I can't seem to get my brain out of panic mode...I

have alot of bone pain today and had the night sweats last night...I'm hoping

this doesn't mean that the drugs have stopped working already...does anyone know

if this should still be happening..I'm on 800 mg Gleevac/day and the dr. says I

am responding well...trying to breathe deeply and shut my brain off but it's not

working

>

[Guest guest]

P.S.! For about 20 percent of people who take both Gleevec and an SSRI

anti-depressant, the Gleevec nullifies the effects of the anti-depressant,

leaving folks inexplicably but terribly blue.

I used to have that problem, then I switched to Sprycel.

On Mon, Jan 11, 2010 at 1:07 PM, A <suzzienovember@...> wrote:

>

>

> Cheryl You Can DO It. You just said the magic word that your home alone. I

> am into this thing for 11 years already, and I find my mind doing all kinds

> of things to me when I am home alone with nothing to do.

> I found that when I was having that bone pain in the beginning, it was told

> to me that it was the Gleevec doing its job and killing off the bad cells.

> After all this time, I still get a lot of joint pain and foot spasms etc.

> The joint pain I get now, is mostly from my Arthritis.

> Then there are days that I feel fine.

> The mind can do crazy things to you, and make you feel things too. The

> doctor said you are responding well. I felt all these things on only 400mg.

> This is very common with people on higher doses. I cannot imagine what it

> feels like to be on 800mg.

> Try to find something to keep you busy and enjoyable to take your mind off

> of everything.

> I always found peace in praying in a nice quiet atmosphere, and to this day

> I still make that time every morning before I start my day.

> My husband knows not to even talk to me, until I am done with my prayer

> time and bible study. I always start my day off like that with what I call

> God And Coffee Hour. Please post when you feel like this, and someone will

> help you get through the present mood your in. Remember we have all been

> through this too.

> God Bless You

> A.

>

>

>

> >

> > just looking for some words of encouragement today...it's my first day

> home alone since the holidays and I can't seem to get my brain out of panic

> mode...I have alot of bone pain today and had the night sweats last

> night...I'm hoping this doesn't mean that the drugs have stopped working

> already...does anyone know if this should still be happening..I'm on 800 mg

> Gleevac/day and the dr. says I am responding well...trying to breathe deeply

> and shut my brain off but it's not working

> >

>

>

>