Re: Talk about embarrassing

[Guest guest]

been there, done that, I mean do that. Hate it, I guess all part of

it......

[Guest guest]

Don't feel bad, i am 55 and had to quit working and one of the reasons was the

same as yours. i went through 5 years of working (I was a teacher) and bringing

a change of undies and had to change during the work day. Believe me, I relate

and understand. This is the first time i have ever shared this, so thanks neal!

From: Neal <nwatson@...>

Subject: [ ] Talk about embarrassing

Date: Friday, October 16, 2009, 2:01 PM

 

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

Don't feel bad.when I first went on Gleevec ( 6 years ago) I was in Macy's

shopping and did the same thing. AND I HAD ON WHITE PANTS!!! You never saw

anyone run to the bathroom faster. Lucky for me I had a sweatshirt on over

another top and I was able to take it off and tie it around my waist till I

got in the car.

Shit is right!!!!!!!!!!!!!!!

_____

From: [mailto: ] On Behalf Of Neal

Sent: Friday, October 16, 2009 2:01 PM

Subject: [ ] Talk about embarrassing

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

Oh, man. Do I know how you feel. Is that demoralizing or what? I'd say " This too

shall pass, " but I'm afraid you are in no mood to hear those words.

Hang in there, buddy. It really does get better. Over time, your doc will give

you something for side effects that don't go away, or ideas for coping. What is

your dose, btw?

From: nwatson@...

Date: Fri, 16 Oct 2009 14:01:23 -0700

Subject: [ ] Talk about embarrassing

Up until yesterday, Gleevec tended to make me a little

constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

Sadly it has happened to me, so don't

feel like the Lone Ranger. It does give

a reason to buy new underwear to

impress your lady friends.

On a serious note, one advice

that is repeated often is that when

you first get the urge to go, you

should not ignore it.

It does not make you less of a

man, just a strong man dealing

with side effects of an oral

chemotherapy.

Sent from my iPhone

On Oct 16, 2009, at 5:01 PM, " Neal " <nwatson@...

> wrote:

> Up until yesterday, Gleevec tended to make me a little constipated.

> For some

> reason my body decided to switch it up, and went to the opposite

> extreme.

> Last night I had the experience of crapping my pants. I don't think

> I've

> ever felt like less of a man in my life. Now I'm a 29 year old man

> who can't

> put in 8 hours and s***s his pants.

>

> Sorry, just wanted to vent.

>

>

[Guest guest]

Neal, I bet almost all of the guys and gals on this site can match your terrible

experience.  It's par for the course, so to speak.  I quit the XL228 trial

because it caused " bowel incontinence. "   I could clear a room in one second! 

the main problem being, I was not aware of these occurrences, it was

involuntary, unexpected, and even if the drug had worked, which it did not, I

would have stopped it.  QOL, nothing like it.  It takes a while sometimes to

know when you are safe in leaving the house, but things do get better, I

promise.  I doubt knowing we have all been there, is much help, but at least we

DO know what you are going through.....it not only sucks, it's crappy!!!

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 trial/U of

Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR 0.017

From: Sharon Teichera <onthewtr@...>

Subject: RE: [ ] Talk about embarrassing

Date: Friday, October 16, 2009, 5:15 PM

 

Don't feel bad.when I first went on Gleevec ( 6 years ago) I

was in Macy's

shopping and did the same thing. AND I HAD ON WHITE PANTS!!! You never saw

anyone run to the bathroom faster. Lucky for me I had a sweatshirt on over

another top and I was able to take it off and tie it around my waist till I

got in the car.

Shit is right!!!!!!! !!!!!!!!

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Neal

Sent: Friday, October 16, 2009 2:01 PM

groups (DOT) com

Subject: [ ] Talk about embarrassing

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

I've been on 400mg since the end of August.

[ ] Talk about embarrassing

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

Buying and putting together an emergency set of clothing for the office is

definitely on this week's agenda. I don't know what I would have done if it

happened at work. I thank God I was in my yard when it happened.

Now I am paranoid when I feel a fart coming on (which is nearly constant

these days).

[ ] Talk about embarrassing

groups (DOT) <mailto:%40> com

Date: Friday, October 16, 2009, 2:01 PM

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

Sometimes they will back down your dosage if your levels stay good. This really

could make side effects more tolerable. And about being a man. It is not the

challenge that determines the man it is what you do with the challenge that

makes the man. You didn't choose this but you can choose what you do with it.

Laugh as much as you can and cry when you need to. Roll with it and don't fight

it.

Sent from my Verizon Wireless BlackBerry

[ ] Talk about embarrassing

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

I lived on Imodium Never went anywhere without taking it first.

Sharon

_____

From: [mailto: ] On Behalf Of Neal

Sent: Friday, October 16, 2009 2:44 PM

Subject: RE: [ ] Talk about embarrassing

I've been on 400mg since the end of August.

[ ] Talk about embarrassing

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

I t has happened to me on more than one occasion! I din't know it at

the time ( I found out 8 years later) that ialso have celiac

disease. I cannot tolerate anytype of Gluten. since goingl gluten

free,Things have been much better.

[Guest guest]

Neil, Things may seem really tough right now but I promise if you keep your

faith and stay strong things will get easier. I am 25 and have had some trying

times as well. I have like so many others dealt with the same thing. I have

crohn's in addition so I definitly know embarrassing. I have had my days where

it just seemed like i can not keep going but i make it. I am sorry things aren't

great. good luck and God bless, amanda

>

> Up until yesterday, Gleevec tended to make me a little constipated. For some

> reason my body decided to switch it up, and went to the opposite extreme.

> Last night I had the experience of crapping my pants. I don't think I've

> ever felt like less of a man in my life. Now I'm a 29 year old man who can't

> put in 8 hours and s***s his pants.

>

>

>

> Sorry, just wanted to vent.

>

>

>

>

[Guest guest]

I love this Group!!! We share everything.   Remember, someone called it " Gleevec

butt. "    I think it contributed to my 2.5 years of celibacy.    Luckily- my

experience happened while I was sleeping- alone. Talk about a wake up call!!!  I

was worried that  I was going to graduate from silk  to not  granny panties but

 Depends.  But as someone said- this too shall pass and it has.

Chi

________________________________

From: Neal <nwatson@...>

Sent: Fri, October 16, 2009 2:49:10 PM

Subject: RE: [ ] Talk about embarrassing

 

Buying and putting together an emergency set of clothing for the office is

definitely on this week's agenda. I don't know what I would have done if it

happened at work. I thank God I was in my yard when it happened.

Now I am paranoid when I feel a fart coming on (which is nearly constant

these days).

[ ] Talk about embarrassing

groups (DOT) <mailto:% 40groups. com> com

Date: Friday, October 16, 2009, 2:01 PM

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

Neal,

I don't post often but read daily.I had to reply to this post..I used to take

Gleevec as well and had the same issues.I would wake in the morning somedays

after doing it in my sleep.I have IBS with constipation and Diverticulosis

also.I had even more constipation on Gleevec with an occasional " accident " .Not

sure what caused it but it did happen.You are not alone.I am no longer on

Gleevec due to so many side effects and a decrease in the effectiveness I

switched to Sprycel and it has been a world of difference.Still have some side

effects but not as bad as with Gleevec..Try not to be too hard on yourself this

is very strong medication.

SharonS

>

> Up until yesterday, Gleevec tended to make me a little constipated. For some

> reason my body decided to switch it up, and went to the opposite extreme.

> Last night I had the experience of crapping my pants. I don't think I've

> ever felt like less of a man in my life. Now I'm a 29 year old man who can't

> put in 8 hours and s***s his pants.

>

>

>

> Sorry, just wanted to vent.

>

>

>

>

[Guest guest]

Hi Neal: I think we told you to feel free to discuss anything, and somebody

will always be able to share. I am sure you are glad your not the only one. I

have not had that experience well being out, but I have learned after all these

years to watch what I eat and when I eat when I am out. I take 2 immodium

tablets before I go out, and if I am out shopping with a friend I always wait

till I am close to home if we are going out to lunch or dinner so I can get home

right after our meal. I have friends who are not even on Gleevec with that

problem, so I do not feel so bad. Put incontinence on top of that issue, and

let me tell you that you do not feel like going anywhere.

I am a lot older than you.

or Suzzie

>

> Up until yesterday, Gleevec tended to make me a little constipated. For some

> reason my body decided to switch it up, and went to the opposite extreme.

> Last night I had the experience of crapping my pants. I don't think I've

> ever felt like less of a man in my life. Now I'm a 29 year old man who can't

> put in 8 hours and s***s his pants.

>

>

>

> Sorry, just wanted to vent.

>

>

>

>

[Guest guest]

>

I don't know what I would have done if it

> happened at work. I thank God I was in my yard when it happened.

>

> Now I am paranoid when I feel a fart coming on (which is nearly constant

> these days).

-----------------------------

Hi Neal,

Actually, diarrhea is a more common problem on Gleevec (and the other drugs)

than constipation. It is OK to use Immodium as much as you need to (per Dr.

Druker who is a CML specialist). If your stool is even somewhat loose in the AM,

you might just take Immodium and then see how the day goes, and use as needed.

Also, if you don't use a probiotic, that is a good thing to consider. This is

the good gut bacteria and maybe that has been disturbed. You can pick up some in

any health food section. Some need to be refrigerated and some don't.

And if your diet does not have a lot of fiber, you might try to increase

that.....to have more bulk and less watery stool. Sometimes you just have to

experiment with your diet and see what works best for you and your GI system.

And now you know that a fart is not always just a fart! Many people in their

early days on these drugs talked about never going far from a bathroom. Your

side effects may subside as time goes by....but a lot of the time we are just

adjusting to what we need to do....like fitting in a cat nap, etc. Hopefully

your employer is willing to work with you a bit. I am sure that things will get

better for you. You could even shift the time that you take the drug if it

helps....you do not need to take it with a particular meal, but just the same

time every day. Some people take with dinner to sleep off most of the side

effects.

Good luck to you...you will find out what works best.

C.

(retired health care worker, dx 11 years ago)

[Guest guest]

I too have not  had the most undiserable moments. I have no warning it hits And

well you know the results.But thank God I do not work and have  been alone when

it has occured.  I am on Sprycel, Have been for 2.5 yrs.

Good luck to everyone

Anita

________________________________

From: china neal <chimera46@...>

Sent: Fri, October 16, 2009 6:07:42 PM

Subject: Re: [ ] Talk about embarrassing

 

I love this Group!!! We share everything.   Remember, someone called  it

" Gleevec butt. "    I think it contributed to my 2.5 years of celibacy.   

Luckily- my experience happened while I was sleeping- alone. Talk about a wake

up call!!!  I was worried that  I was going to graduate from silk  to

not  granny panties but  Depends.  But as someone said- this too shall pass and

it has.

Chi

____________ _________ _________ __

From: Neal <nwatson@kriegerands tewart.com>

groups (DOT) com

Sent: Fri, October 16, 2009 2:49:10 PM

Subject: RE: [ ] Talk about embarrassing

 

Buying and putting together an emergency set of clothing for the office is

definitely on this week's agenda. I don't know what I would have done if it

happened at work. I thank God I was in my yard when it happened.

Now I am paranoid when I feel a fart coming on (which is nearly constant

these days).

[ ] Talk about embarrassing

groups (DOT) <mailto:% 40groups. com> com

Date: Friday, October 16, 2009, 2:01 PM

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

I too have had the most undiserable moments, have no warning it hits  and well

you know the results.

But thank God I do not work and have been alone when it has occured.  I am on

Sprycel, Have been for 2.5 yrs.

Good luck to everyone

Anita

________________________________

From: china neal <chimera46@...>

Sent: Fri, October 16, 2009 6:07:42 PM

Subject: Re: [ ] Talk about embarrassing

 

I love this Group!!! We share everything.   Remember, someone called  it

" Gleevec butt. "    I think it contributed to my 2.5 years of celibacy.   

Luckily- my experience happened while I was sleeping- alone. Talk about a wake

up call!!!  I was worried that  I was going to graduate from silk  to

not  granny panties but  Depends.  But as someone said- this too shall pass and

it has.

Chi

____________ _________ _________ __

From: Neal <nwatson@kriegerands tewart.com>

groups (DOT) com

Sent: Fri, October 16, 2009 2:49:10 PM

Subject: RE: [ ] Talk about embarrassing

 

Buying and putting together an emergency set of clothing for the office is

definitely on this week's agenda. I don't know what I would have done if it

happened at work. I thank God I was in my yard when it happened.

Now I am paranoid when I feel a fart coming on (which is nearly constant

these days).

[ ] Talk about embarrassing

groups (DOT) <mailto:% 40groups. com> com

Date: Friday, October 16, 2009, 2:01 PM

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.

[Guest guest]

HELLO GROUP!

     WHAT A WONDEROUS THING IS THE HUMAN BODY! ACCORDING TO DR. OZ THE AVERAGE

HUMAN BEING PASSESS GAS 14 TIMES A DAY, BOY THAT IS NOTHING ON A GLEEVEC DAY IN

MY HOUSE. PATRICK HELD THE RECORD BEFORE CML AND BY GOD HE IS IN NO DANGER OF

LOSING IT TO ANYONE! HE OUT-SKUNKS CAROLINA SKUNKS AND PEGGY CAN TELL YOU THAT

IS QUITE A FEAT. SERIOUSLY THOUGH, THANK FULLY SO FAR NO DIARHEEA. JUST NUMBING

FATIGUE. JUST CAN'T GET FAMILY OR FRIENDS TO UNDERSTAND HOW MUCH HIS BODY JUST

CAN'T DO ANYMORE.  WE TRY . THE ONLY ONE WHO UNDERSTANDS IS THE CAT, SHE NAPS

ABOUT AS MUCH AS PAT. PAT SAYS TO SAY HELLO TO ALL OF YOU AND THANKS FOR YOUR

PRAYERS AND GOOD THOUGHTS WHEN HE WAS IN HOSPITAL.

                                                          LOVE TO YOU ALL

                                                                    PEGGY AND

PATRICK

From: Neal <nwatson@kriegerand s

<mailto:nwatson% 40kriegerandstew art.com> tewart.com>

Subject: [ ] Talk about embarrassing

groups (DOT) <mailto:% 40groups. com> com

Date: Friday, October 16, 2009, 2:01 PM

Up until yesterday, Gleevec tended to make me a little constipated. For some

reason my body decided to switch it up, and went to the opposite extreme.

Last night I had the experience of crapping my pants. I don't think I've

ever felt like less of a man in my life. Now I'm a 29 year old man who can't

put in 8 hours and s***s his pants.

Sorry, just wanted to vent.