Pain is relative

[Guest guest]

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