RE: 's tests

January 29, 2002

loriann,

I'm so sorry that you have to wait another month to go through this again. I

hope all goes better next time. All this hospital stuff is so scary and the

kids don't understand what is going on.

Charlyne

Mom to Zeb 9 DS/OCD?

January 29, 2002

Loriann,

Hope is back to himself after his sedation, many hugs.Hope

he'll be alright until his next appt..Take care.

Irma,13,DS/ASD

> Well, they ended up not doing 's biopsy. They gave him the

versed (or

> however you spell that). My MIL and I were there until they were

ready to

> start. The nurse came back way too soon. Turns out that they

didn't sedate

> fully (like I thought they were going to do - who would NOT sedate

a 2 year

> old?) They just made him woozy, but apparently not woozy enough.

When the

> scope went down, it made him hold his breath. They tried it twice,

but his

> O2 sats (oxygen saturation) dropped. So we had to reschedule for

full

> sedation. I am a lady of great faith, and I just take it as he

wouldn't

> have tested positive this time around. I have been cheating a bit

and

> giving him low gluten, or avoiding some gluten because I know it

hurts his

> tummy. We had to reschedule for MARCH 5th! Seems like an eternity

away.

>

> AND, he was the worse coming off the sedation that I have EVER

seen! He

> actually slugged me because I was holding him and he wanted down.

Put

> 's behaviors to shame! They said it sometimes effects kids

like that,

> but that he wouldn't remember it. I got to the car and my

shoulders and

> arms were spaghetti noodles because he fought me the whole

way......and we

> were on the 4th floor of the parking garage. I finally put him

down in the

> entry way of the elevator (because he's just too bull-headed to

take my word

> for it that he couldn't walk). Good thing there were no other

parents

> around, they would have thought I was abusing him. He went to take

off

> running, FREEDOM! - and fell flat on his face. He did let me carry

him

> after that (or at least tolerated it). Makes me want to take up

weight

> lifting again.......

>

> Loriann AKA Flitter the Christian clown

> Wife to Dewight

> Mom to , 11 years, Down Syndrome, PDD-NOS and Celiac Disease.

> , 2.5 years and Strong Willed and Celiac Disease

January 30, 2002

Loriann:

your day sounded like you needed a bubblebath to relax. I really understand

those days. Hope it gets better

January 30, 2002

Loriann:

your day sounded like you needed a bubblebath to relax. I really understand

those days. Hope it gets better

January 30, 2002

In a message dated 1/30/02 10:25:48 PM Eastern Standard Time,

hsmyangels@... writes:

> And I've rambled enough. It's time for a shower and bed....

>

Your post is the last thing I read before finally getting some sleep. It's

almost midnight. You are amazing! I wanted to say something about and

the tests. Bummer. I shortened it. At least you keep going. You are like the

energizer bunny. It's got to get better. Lots of hugs your way.

Diane

January 30, 2002

Hi Loriann,

I am exhausted after reading your post!! What a day. I am happy that you made

it home safely and your poor son survived the day as well. I am going to bed

too.

Charlyne

Mom to Zeb DS/OCD ?

January 30, 2002

Thanks, , but today wasn't much better. I took for his school

physical. They must have been running behind. He was pretty good in the

exam room, until he heard a baby crying. He insisted on going and checking

on him. I was almost into the therapeutic hold when they finally came in.

Sometime during the struggle, he wet his pants. They sent in a trainee

first, who had to go through all the history questions. Why do they do this

when they have your records right in front of them? Gotta love the

military. Plus, he had never treated an autistic or Down's kid. THEN, he

listened to his heart...and had never heard a heart beat like that before so

he listened a long time. was pretty good for that, though. He even

tried to do a neurological test on him, checked his spine, I had him doing

Simon Says, so that went pretty good. But then they were gone for a long

time.... We played Simon Says for a while, then blew up surgical gloves and

let them go. I was just about to the end of my bag of tricks when the

trainee and the doctor came in, with another trainee in tow to listen to the

heart beat. He hadn't had a thyroid test for a while, so they were going to

send him to the lab. Good thing I headed them off before they actually said

the word, LAB, and that the 2nd trainee was listening to his heart. So I

told I'd try to give blood for him when we got to the lab....that

distracted a bit longer (amazing the games we play, huh?). They had to call

in reinforcements by the time he figured out I couldn't do it for him. But

this African-American that must have been 7 feet tall came in at the same

time that a female came in for blood work. He asked if she could go first,

but the guy said, " You duh man, you gotta show her how it's done. " Worked

like a charm, not a peep out of him.

THEN came the drive home. First, a note of history: I have had 2 car

accidents in the rain, so I HATE driving in the rain. It was raining so

hard I couldn't see 4 car lengths with the wipers on the fastest they could

go....and I had 30 minutes of Interstate to drive at 65MPH.....the only

vehicle going slower than me (and I was doing 60) was a J.P.Hunt truck.

They're notorious for hiring new people with little experience (sorry if any

of you/spouses are truck drivers). I got home, pulled into the garage as my

husband opened the door to the house to hear me scream! He thought I was

having a heart attack....no, just blowing off tension....

But, it's better now.....cards with the in-laws (which is actually relaxing

for me, since I get along well with my in-laws) and the fact that she cooked

most of the dinner (I had a roast in since morning), and my dear sweet

husband did the dishes for me.....ain't I lucky?

And I've rambled enough. It's time for a shower and bed....

Loriann AKA Flitter the Christian clown

Wife to Dewight

Mom to , 11 years, Down Syndrome, PDD-NOS and Celiac Disease.

, 2.5 years and Strong Willed and Celiac Disease

January 31, 2002

In a message dated 1/30/02 10:26:05 PM Eastern Standard Time,

hsmyangels@... writes:

> They sent in a trainee

> first, who had to go through all the history questions. Why do they do this

> when they have your records right in front of them?

Not just military Loriann. Teaching hospitals too. Course, they tend to

be the best, so I guess the thinking is you have to put up wiht it!!

URGH!!!!

<<The nurse came back way too soon. Turns out that they didn't sedate

fully (like I thought they were going to do - who would NOT sedate a 2 year

old?) They just made him woozy, but apparently not woozy enough. When the

scope went down, it made him hold his breath. They tried it twice, but his

O2 sats (oxygen saturation) dropped. So we had to reschedule for full

sedation. >>

SHEESH Loriann!! I am floored that they wouldn't fully sedate him!!! This

test is just too risky not to do that. A lot can happen if the child is

moving around. I'm GLAD they didn't get anywhere and decided to do it under

full sedation. MUCH safer for !!!

<<....

But, it's better now.....cards with the in-laws (which is actually relaxing

for me, since I get along well with my in-laws) and the fact that she cooked

most of the dinner (I had a roast in since morning), and my dear sweet

husband did the dishes for me.....ain't I lucky?>>

Thank goodness for those moments, eh???? Glad you were able to relax and

wind down after all that!!! It does indeed help!!! {{{{{{{{{hugs}}}}}}}}}}

Donna

February 1, 2002

I am glad you get to vent Loriann I really understand those days my mornings are

incredible. Tara neds a 4 coure breakfast meal b4 she can start her day. And I

have a 4 year old. Keep focused!

January 6, 2010

Thank you so much Lottie for your kind words! How do I get in contact

with Dr. Druker? I guess the reason I am being patient is because I have

only been taking the Gleevec 200 for about 6 weeks. The first week at

400 was not good, they dropped me to 200 and my body adjusted. Now I'm

headed back up to 300. I've been taking that for three days. Usually it

takes about a week before I get 100% of the bad side effects.

I think I am going to try to see if I can handle the 300 for the next

week. I see my oncologist next Friday. If I feel worse which drug should

I shoot for?

The worst side effects for me are the pain, chemo brain and tiredness.

The rest like having nausea, bad taste in my mouth, weight gain,

headaches, rash, hair thinning, etc have been manageable.

I'm not one to complain but I trust what we all discuss in our group. If

you guys think I need to be on a different drug then let me know. I will

also reach out to Dr. Druker. I'm going to bring my latest test results

tomorrow morning and email them out to you guys. See how I compare....

Thanks again for your kind words and suggestions!

Love,

Chemo-Sabi

From: [mailto: ] On Behalf Of

Lottie Duthu

Sent: Wednesday, January 06, 2010 2:28 PM

CML

Subject: [ ] 's tests

Dear Chemo-Sabi,

You have us all worried about you, the way you are being shunted about.

You need to be on a drug that will stabalize you in the short run, too.

What seems to be the problem with switching drugs? We look after our own

and we just think you are getting the run around. My CML buddies are

asking what can we do to help . Gleevec is not for everyone. What is

keeping them from changing you to the new Ariad trial drug, or even

Tasigna. In time some of the side effects go away, but you need to see

someone who is willing to try something different. I have been on 7

different drugs in my CML lifetime and finally found a shoe that fits.

Why don't you shoot an email to Dr. Druker with your medical information

and ask him what he thinks of this situation. He will answer you. I

stayed with an oncologist for 4 years because I thought he knew what he

was doing. Now all of his patients have died off and I am the only one

standing and that tells me a whole lot, because I hav e lived twice as

long as his longest living patient.

This is your life, how do you want to live it? Find the best and stay

the course.

Hands & hearts,

Lottie

January 7, 2010

Hi Chemo-Sabi

200 mg is a sub-optimal dose of Gleevec for most people. You should have

your serum level tested to see if you are one of those patients for whom a

200 mg dose has the same effect as a 400 mg dose. For most patients, the

daily dose should not be below 350 mg.

One problem with a sub optimal dose of Gleevec is that you can become

resistant to the drug.

t looks like your Quality of Life is in the toilet with Gleevec. It is

probably time to switch to another TKI. There are many on this list who have

switched to a different TKI and all their side effect problems stopped. Your

doctor should be advising you on this. I don't see the point of trying to

tolerate the 300 mg dose if you haven't had your serum level tested.

Zavie

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

Tel in FL: 561-429-5507

_____

From: [mailto: ] On Behalf Of

Romero,

Sent: January-06-10 5:47 PM

Subject: RE: [ ] 's tests