AML recently diagnosed

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Rudy - 29 May 2007 13:18 GMT

My brother has been diagnosed with acute leukemia (age 48).
No treatment has started, even at the urging of his doctors.
I believe he is seriously considering to refuse any chemotherapy, even
though
it's pretty common knowledge he'll likely promptly die without it. He's an
intelligent guy and has given it lots of thought apparently. He believes
his
quality of life will be better, even if the chemo could buy him some time.
(BTW, this really is my brother and NOT me I'm talking about.)

I care what happens to my bro, but it's his choice and I'll keep quiet
about it. I'm thinking that transfusions and other stuff they could
do could perhaps give him a little longer life. He's not a fan
of chemotherapy and believes most cancer patients suffer too
much from it and that many end up dying from the toxic stuff
itself, and I think he may be right, even though most docs probably
don't like to talk about it I'd guess.

BTW, I was just curious about a couple of things. (It'd be nice
if a hemotologist could be reading.) Has there ever been a
documented case of a person with an AML diagnosis going
into a permanent remission without chemo therapy?

Also, one thing about transfusions.... When a person gets
a transfusion, say a pint or so, they never "drain" the person
of a pint first, right? :) I know this sounds like a stupid question,
but with a person with leukemia say, wouldn't it make sense
to drain some of the diseased blood before putting in the
fresh un-diseased blood?

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J - 29 May 2007 15:31 GMT

> My brother has been diagnosed with acute leukemia (age 48).
> No treatment has started, even at the urging of his doctors.
[quoted text clipped - 18 lines]
> documented case of a person with an AML diagnosis going
> into a permanent remission without chemo therapy?

Not that I'm aware of. Check on ACOR list - see below

> Also, one thing about transfusions.... When a person gets
> a transfusion, say a pint or so, they never "drain" the person
> of a pint first, right? :) I know this sounds like a stupid question,
> but with a person with leukemia say, wouldn't it make sense
> to drain some of the diseased blood before putting in the
> fresh un-diseased blood?

Hello,
I'm not an expert.
I think blood is produced in the bone marrow, so transfusions wouldn't work.
That's why, if chemotherapy fails, the next step is high dose chemotherapy to
kill as much blood as possible, then bone marrow transplant (to produce fresh,
no/less cancerous blood)

We've supported 2 persons long term whose loved ones did not survive. Both were
female and did the high dose chemo.
There's an AML list here http://www.acor.org/mlists/mlists.html One lady was
posting about her husband here, who achieved remission (around Christmas?) and
is now trying something "unproven", so you could ask there, how he's doing.

Also a HEM-ONC list there. You could ask if there's a hemotologist there.

This webpage, if accurate, lists factors that give the best and worst prognosis
http://en.wikipedia.org/wiki/Acute_myeloid_leukemia It says cures are rare. I
imagine remissions are more common. And 2nd malignancies.
I would take my bloodwork to a hematologist and ask if I'm in favorable group
(or not) and maybe visit people, same age, (probably in hospital) to talk with a
few and see how they are doing and make my decision from there. That's what I
would suggest to one of my siblings.
It's hard to think of losing a close relative, sibling. Some have been our
friends a lifetime.
You say you don't speak to him about it. I understand you don't want to put
pressure on him, but if he has no partner to go with him, t'were my brother, I
would ask to go with him, seeing as it might one of his last journeys. Not to
pressure him, but just to be there with him.

If he decides for treatment, you'd best get your support from the ACOR list(s).
It can get quite complex and I wouldn't know what to make of signs/symptoms and
bloodwork results.
If he decides no treatment, there may be people here who would support you (or
your brother), for the duration. (if there's anything we can do or say that
might help you).
On the other hand, he may have lists of things he wants to get done, including
you, so you may not have a lot of time for us here. I'll watch for your updates.

Best wishes to both of you.
J

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