Re: Pain is relative

[Guest guest]

HEY LOTTIE, IS IT OK IF I CORRECT YOU? PLEASE, PRETTY PLEASE?? I WAS IN THE

PHASE 2 TRIAL OF STI571 (GLEEVEC) AT OHSU, (OREGON HEALTH AND SCIENCE

UNIVERSITY) HONEY, NOT THE HUTCH, UNDER DR. DRUKER. . NO MATTER, IT QUIT

WORKING AFTER ABOUT 1 1/2 YEARS, THEN I DID A 6 MONTH TRIAL OF GLEEVEC/ARSENIC,

IT DID NOT WORK, THEN I DID ANOTHER 6 MONTH TRIAL OF GLEEVEC/ZARNESTRA, BOTH AT

OHSU. THAT DID NOT WORK EITHER. I GOT INTO THE BMS TRIAL FOR SPRYCEL AT MDACC

IN JULY, 2004, REACHED CCR IN 10 MONTHS, BUT AM OUT OF CCR AT THE MOMENT DUE TO

BEING ON AND OFF THE DRUG BECAUSE OF PLEURAL EFFUSION. GEE, I DIDN'T MEAN TO GO

INTO ALL THAT, JUST WANTED TO MAKE A LITTLE CORRECTION. YOUR OLD BUDDY, BOBBY

Lottie Duthu <lotajam@...> wrote:

Dear Matt,

By lower back, do you mean the lumbar section? When I was on Sprycel, my upper

back hurt. It started between the shoulders and worked it's way down to the

waist. I just wanted to scream when it started. When I started the SKI 606 (ski)

it starts a little lower and goes into the lumbar and left kidney area. X-rays

only show arthritis. No matter what we take, I believe we will have some side

effects. Some will feel the side effects more than others and not necessarily

have the same thing.

I started Sprycel on the maximum dose of 200 mg./day. It knocked me to the

ground. I went from the bed to the bathroom and could barely do that. I had no

idea that it was the Sprycel doing that to me. My head hurt so much I wrapped a

heating pad around it. We were staying in an apartment in Houston and I had to

improvise. We couldn't find a heater, so I bought a vaporizer so the bathroom

felt like a sauna. LOL. It got so bad I had to go to the hospital. Then they

kept lowering the dose until I was only on 20 mg./day. This went on for about 2

to 2 1/2 years. I had few problems on the 20 mg., but that must have been like M

& M's to my body. Believe me, I resisted when they wanted to change me to yet

another trial. I remember my calcium being low while being tested and the nurse

told me to eat Tums all week-end. It worked, by the following clinic day, it was

normal.

Good luck with the Tasigna Sharon. Some people call it Tasi for short. Whatever

you call it, I hear it has less side effects, too, but only on 400 mg. The 800

mg. can be pretty overwhelming. Who knows till you try it. I think it is worth a

try. That is what I wanted, but my doctor wanted me in the ski trial. Maybe they

just needed warm bodies, I don't know, but I seem to be stuck with it because

it's working, even at 300 mg., so I'm going to give it a trial run. When I was

diagnosed, there was Inteferon Alpha (INF), Hydrea and I think Bobby said she

was on Arsenic for a while. Some of those things worked on some patients, but

for the overwhelming majority it didn't work. Bobby was one of the few that got

in the original STI (Gleevec) trials at the Hutch. I would have faked anything

to get in that trial. LOL.

Speaking of arsenic, when I was a secretary to a judge, I used to watch some

interesting trials. One was a woman who fed her husband arsenic. He was in the

hospital, very sick. The doctor was suspicious and cut his toenails and hair and

kept them for samples. The tests showed he had arsenic in his body and the

doctor ordered NBM (nothing by mouth). He walked in the room and his wife was

giving him spoonsful of ice. He threw her out of the room and ordered more

tests. He died later and they proved that even though he was doing better after

he got in the hospital, he died after she went into the room. She was arrested

and stood trial for murder. they collected samples of everything in their

trailer and found arsenic in every bottle in the medicine cabinet. She confided

to a friend that she has bought roach poison in those little roach houses and

crushed it. Ellen Flood was her name. After going to prison, she studied to be a

nurse, but I often wondered who would hire her.

LOL. She's out of prison now, doing her thing.

Live in harmony and receive your blessings,

Lottie

[Guest guest]

Lotti,

When I started having side affects on Sprycel I had pains all over my body.

It started in my back then went to my hips, then to my stomach then to my

arms and even to my " boobs " it was like I was pregnant. That same feeling.

Each pain lasted only two days before it went to a different place. Then I

had PEffusion. So we stopped that medication. (sprycel) I was really

disappointed because I did so so well for exactly three years. I was back to

my normal self. Felt great. I start " Tasi " ( I like that name much

better)...on Wednesday. They are watching me very closely.. EKG and CBC

every week. Since I was PCRU they are starting me on only 400mg. Thank

goodness!!! I will keep you all posted on how I do.

Matt-thanks you so much for your info.

Sharon

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Saturday, March 08, 2008 8:51 PM

Subject: Re: [ ] Pain is relative

HEY LOTTIE, IS IT OK IF I CORRECT YOU? PLEASE, PRETTY PLEASE?? I WAS IN THE

PHASE 2 TRIAL OF STI571 (GLEEVEC) AT OHSU, (OREGON HEALTH AND SCIENCE

UNIVERSITY) HONEY, NOT THE HUTCH, UNDER DR. DRUKER. . NO MATTER, IT QUIT

WORKING AFTER ABOUT 1 1/2 YEARS, THEN I DID A 6 MONTH TRIAL OF

GLEEVEC/ARSENIC, IT DID NOT WORK, THEN I DID ANOTHER 6 MONTH TRIAL OF

GLEEVEC/ZARNESTRA, BOTH AT OHSU. THAT DID NOT WORK EITHER. I GOT INTO THE

BMS TRIAL FOR SPRYCEL AT MDACC IN JULY, 2004, REACHED CCR IN 10 MONTHS, BUT

AM OUT OF CCR AT THE MOMENT DUE TO BEING ON AND OFF THE DRUG BECAUSE OF

PLEURAL EFFUSION. GEE, I DIDN'T MEAN TO GO INTO ALL THAT, JUST WANTED TO

MAKE A LITTLE CORRECTION. YOUR OLD BUDDY, BOBBY

Lottie Duthu <lotajamcomcast (DOT) <mailto:lotajam%40comcast.net> net> wrote:

Dear Matt,

By lower back, do you mean the lumbar section? When I was on Sprycel, my

upper back hurt. It started between the shoulders and worked it's way down

to the waist. I just wanted to scream when it started. When I started the

SKI 606 (ski) it starts a little lower and goes into the lumbar and left

kidney area. X-rays only show arthritis. No matter what we take, I believe

we will have some side effects. Some will feel the side effects more than

others and not necessarily have the same thing.

I started Sprycel on the maximum dose of 200 mg./day. It knocked me to the

ground. I went from the bed to the bathroom and could barely do that. I had

no idea that it was the Sprycel doing that to me. My head hurt so much I

wrapped a heating pad around it. We were staying in an apartment in Houston

and I had to improvise. We couldn't find a heater, so I bought a vaporizer

so the bathroom felt like a sauna. LOL. It got so bad I had to go to the

hospital. Then they kept lowering the dose until I was only on 20 mg./day.

This went on for about 2 to 2 1/2 years. I had few problems on the 20 mg.,

but that must have been like M & M's to my body. Believe me, I resisted when

they wanted to change me to yet another trial. I remember my calcium being

low while being tested and the nurse told me to eat Tums all week-end. It

worked, by the following clinic day, it was normal.

Good luck with the Tasigna Sharon. Some people call it Tasi for short.

Whatever you call it, I hear it has less side effects, too, but only on 400

mg. The 800 mg. can be pretty overwhelming. Who knows till you try it. I

think it is worth a try. That is what I wanted, but my doctor wanted me in

the ski trial. Maybe they just needed warm bodies, I don't know, but I seem

to be stuck with it because it's working, even at 300 mg., so I'm going to

give it a trial run. When I was diagnosed, there was Inteferon Alpha (INF),

Hydrea and I think Bobby said she was on Arsenic for a while. Some of those

things worked on some patients, but for the overwhelming majority it didn't

work. Bobby was one of the few that got in the original STI (Gleevec) trials

at the Hutch. I would have faked anything to get in that trial. LOL.

Speaking of arsenic, when I was a secretary to a judge, I used to watch some

interesting trials. One was a woman who fed her husband arsenic. He was in

the hospital, very sick. The doctor was suspicious and cut his toenails and

hair and kept them for samples. The tests showed he had arsenic in his body

and the doctor ordered NBM (nothing by mouth). He walked in the room and his

wife was giving him spoonsful of ice. He threw her out of the room and

ordered more tests. He died later and they proved that even though he was

doing better after he got in the hospital, he died after she went into the

room. She was arrested and stood trial for murder. they collected samples of

everything in their trailer and found arsenic in every bottle in the

medicine cabinet. She confided to a friend that she has bought roach poison

in those little roach houses and crushed it. Ellen Flood was her name. After

going to prison, she studied to be a nurse, but I often wondered who would

hire her.

LOL. She's out of prison now, doing her thing.

Live in harmony and receive your blessings,

Lottie

[Guest guest]

Lottie:

It is not lower back pain, it radiates from the mid back area.

Approximately below the shoulder blades to the upper

lumbar area.

Hope it helps,

Matt

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)