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Dear All---I agree with Mike & many others that
one must explore the options & then decide with the facts at hand. In July
'00 I opted for a "mini" transplant. My brother was a perfect match, I was
not eligible for the STI trials, and I was basically healthy. I was also over
50(57 @dx with a Nov. birthday)---a critical point for increased mortality
rate.
I was offered the mini because the procedure
involved no radiation & less aggressive chemo, thus less risk. But I
don't know what the difference was compared with the chemo given for a
full bmt. I asked about the success rate & was told "We don't know." But I
decided on it for the above reasons and also because I didn't want to wonder
later. I was in the hospital 3+ wks. & came through very well. Had some
rough bouts after getting platelets-------got the shakes so badly that the bed
practically shook, too. I later said it was like Linda Blair in 'The Exorcist.'
(Sorry if the younger folks have no frame of reference for this.)To top things
off, the nurses said I had a fever----so they put ice packs under my arms &
behind my neck!!!
The other rough piece was having a gi attack 3
nights in a row. The 1st night I had 2 nurses with me. I was sitting on the
toilet; they kept telling me to keep my head up. But all I wanted to do was
throw myself on the cold tile floor. I had had a unit of blood that day. It was
possibly a reaction to the preservative used in the blood. The 2nd night I had 1
nurse with me; the 3rd night I was fine on my own---not esp. happy, but
fine.
My counts got to zero as intended. I never had
terrible mouth sores or nausea, so I was able to eat. Someone told me to order
an extra sandwich to keep for later in the evening in case I got hungry. I often
did partly because I stayed up late so I wouldn't have to be awakened at
midnight for medication. Saw a lot of late night Oprah & read 'The
Poisonwood Bible' start to finish. Also had a fridge where I kept jello &
some other stuff. No dental floss was allowed in case of cutting the gums. So I
gave mine up to one of the nurses. About 2 days went by & I couldn't
stand not using it. So I had my husband get it for me & hid it in my
drawer. I was very careful both in using it & in not getting
caught.
I made friends with Sharon down the hall; we
walked the hall daily& sometimes checked on each other by phone. She kept a
brisk pace & I followed---I was so afraid of getting lung problems.
Sharon stayed in the hospital longer than I did. She had a lot more trouble than
I did, even though she too had the mini. In October of '00 I learned that Sharon
had died. But she had had a blood disorder for 20 yrs.(Her dx was something I
had never heard of but didn't want to ask her a lot of questions so never got
the name straight.) The transplant was her last resort, whereas mine was the 1st
resort. It was a great sadness to lose her.
One of the nurses gave me a list of her rules:
never eat in bed---always get yourself up & out & sit in a chair.shower
daily no matter how bad you feel. Walk daily. I was afraid not to listen to her
& I didn't want to disappoint her. The nurses are incredible people; so are
the drs. But I long ago recognized that the docs give the orders & create
the formula but it's the nurses who keep you alive. And everyone cares that you
stay alive.
This is getting so long that my wrists are tired.
So I'll give the last chapter & then write again about some coping
strategies.
I went home on day 24. My brother's cells never got
above 30%. In Oct. they tried a DLI---donor leukocyte infusion---to trigger the
remission. It didn't work. But the whole process helped reduce the Phillies from
100% to 20%(I think). Can't believe I can't remember. Then my dr. got me
into the 114 trial even tho I was not in the advanced stage. I had an additional
translocation so that qualified me for the advanced stage trial. I started STI
in Nov. '00. It was FDA approved in May. Reached full remission by late August
'01. Am going on 5 yrs. from dx(March '00) & 4 1/2 yrs. with Gleevec. I
am healthy & active---a bit overweight("chuffy," as they say in Trinidad).
My life isn't perfect but it's awfully good.
Next chapter I'll tell you how scared & anxious
I was on the road from dx to remission.
I hope I'm being helpful. As the Dali Lami once
said, "I can't teach you anything. I can only tell you what I know."(Might not
be a direct quote, but it's close.)
Best regards to all-------Ruth
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- [CML] my failed bmt/very long marcon
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