Kathy Q. here... My nephew was diagnosed with AML on Thursday, September 30,
and began his first round of chemo on Friday, Oct. 1. Here is an excerpt
from a note I sent to the Molers to reassure myself that the docs were
treating him aggressively and correctly.
"I did find out some specifics about his treatment so far. Although my
spelling may be wrong, during the first 7 days of active treatment he
received a mixture of IDR/idurubicin and ARA-C. He has also received two
spinal infusions of Methatraxine and will receive 5 more over the next 2-3
weeks. The preliminary reports came back that the cancer has decreased
considerably in his spinal fluid. They did the bone marrow biopsy today and
we should hear by Thursday what the results of the IDR and ARA-C treatments
have produced. Although the right side of his face is still paralyzed, the
problem with his left eye being stuck at midline has totally dissappeared,
and the masses on his spine have decreased from 8CM to 4CM. So most
everything so far seems to be going in the right direction.
For anyone out there who has been diagnosed with early AML, is there any
chance he'll get off with just one chemo treatment? Or is two standard, and
maybe three? Also, because it's centered in his brain, what's the liklihood
of him needing a bone marrow transplant? Is that also a given, or just a
Since that time, we've gotten the results of the bone marrow biopsy to
measure the effectiveness of the chemo induced through the shunt (the lumbar
chemo treatments are still underway). His bone marrow came back cancer free,
and he is producing "blast" again, which the docs think is a good thing.
They are talking about releasing him from the hospital as soon as his white
blood count goes up to 1.6, and it was .7 as of yesterday. They're thinking
he might be released as soon as the beginning of November. As to follow up
treatment. Another round of chemo is for sure, although he may be able to do
it out patient. And a bone marrow transplant is also for sure. I've had
myself tested for a match, but it is too soon to tell if that will work. He
has no brothers or sisters, so they've begun the process to find a match.
It is still too early to tell if the lumbar punctures are going to be fully
effective. He had an MRI yesterday and I will find out the results when I
talk to him later today. But they suspect that there are more leukemia
masses forming in his neck and brain. Not an unexpected turn of events
according to the docs. The chemo infused through the lumbar punctures is
designed to treat that part of the disease. He has probably had about 8 red
blood cell transfusions and 4 platelet transfusions in the past 3 weeks.
I know this is a long mail, but here's the core message. If your sister is a
fighter, that's going to be incredibly helpful to her. My nephew is just 24
and was in very good physical shape before this hit him. He has twin sons
and a wonderful wife and a very strong faith. They belong to a church that
has pulled out all the stops to do whatever they can. All these things help.
A strong sense of self preservation and all the support you can give are
essential from everything I've read so far.
What have I been able to do? Aside from talking to him every day (even if I
can't visit him), I've been busy researching as much as I can. I haven't
given him and his wife all the information at once. But when they confront a
question, that's when I give them what I've found out. They just 2 days ago
realized that the bone marrow transplant was going to be required, so I was
able to provide them with the details of the program at Stanford (which is
where his transplant will occur) so they can begin to ask the right questions
and make sure they are getting the right answers.
You are doing the right thing Red-eye... arming yourself with information to
help decrease the fear. This is a wonderful forum that will provide you with
information and much support as you come to terms with the overwhelming news
you're trying to deal with now.
Welcome to the Moler group! Let me know however I can help. I also live in
California, but am in Boston right now on a business trip.
Warmly, Kathy Q.
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