Re: [MOL] MDS/Pauli/Reply [00130] Medicine On Line


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Re: [MOL] MDS/Pauli/Reply



Hi Tonia & Pauli:

Tonia, the journal idea is a very, very good idea.  It helps you to keep the
Drs. directions straight, and to compare what worked and what didn't, along
with what may not be right with their suggestions.

I always use a notebook when I'm buying large ticket items.  I once had a
car salesman tell me "You know lady, sometimes too many notes can be
confusing".  Actually, he was the one upset because I could tell him exactly
which dealer had which car and at what price.  He was embarrassed that he
was wrong and tried to blame me.

The same point works with Drs.  My mother's doctor tried to tell her that he
told her she had cancer, but she just didn't want to listen.  Now my mother
had a very good memory, and if someone was mentioning cancer, she would have
remembered that.  With a notebook, she could have pulled out her notes and
showed him the conversation.  Keep the journal up.  What a great idea!

Sincerely,

Ann Dunn
Operations Manager
UltiTech, Inc.

----- Original Message -----
From: <TON1213@aol.com>
To: <mol-cancer@lists.meds.com>
Sent: Monday, October 02, 2000 6:34 PM
Subject: Re: [MOL] MDS/Pauli/Reply


> Hi Pauli-
>
> Just some more info. First, I have four kids too.  A difficult thing to
> balance alone with work and all, now this.... I will keep you in my
prayers.
>
> What the doctors mean about your dad having bone marrow left is this.  The
> chemicals will destroy the cells in a patients marrow.  (the soft tissue
in
> the center of the bone) If the biopsy is "empty" after chemo that simple
> means the cells were killed off and no indication of abnormal cells
exist --
> unfortunately the chemo also kills "good," normal cells in the process.
The
> hope is that the normal cells will return and the leukemic cells will not.
> Just to give you hope.  My dads first bout with chemo didn't work at all.
> The leukemic cells were unchanged.  He also went through the chemo with
> flying colors, not many problems.  This is called refractory. This means a
> patient has cancer, went through chemo and nothing changed.  Round 2 was
30
> days later.  It worked.  Only small amounts of abnormal cells were
indicated
> -- less than 2%.  Praise God!!!  Next was a stem-cell transplant.  While
> waiting for dads stem-cell the doctors had dad undergo "consolidation"
chemo.
>  Meaning - fry his bone marrow some more while we wait, just in case that
> cancer returns.  Well, prior to the stem cell another biopsy had to be
> performed.  The leukemic cells returned.  This is called Relapsed.
Totally
> crushed us.  The good news was only the MDS was back not the AML, so the
stem
> cell was still on.....
>
> My reason for sharing this was to let you know that bad news does not mean
> the end.  Always, Always there are other choices and options.  Clinical
> trials are out there that your dad may be eligible for.  His main team of
> doctors may only be aware of the trails offered in their hospital.  Let me
> know where you are located and I can help direct you to some clinical
trails.
>  My dad was willing to travel anywhere.  He wants to live and after a few
> persistent talks, he travels to Chicago and Houston and finally landed in
Ann
> Arbor, Michigan.  We are very pleased with his doctors and trust them
but....
> I QUESTION EVERY MOVE, LOOK UP EVERY MEDICINE, AND
> ALWAYS WRITE EVERYTHING IN MY JOURNAL RIGHT IN FRONT OF THEM.  HA HA. I am
> sure they just love me ;]
>
> Tonia
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