Re: [MOL] red-eye's intro/Welcome to our Forum=Attn. Kathy Q. andBrandi [00783] Medicine On Line

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Re: [MOL] red-eye's intro/Welcome to our Forum=Attn. Kathy Q. andBrandi too..

Hi Red-eye,

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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