Hi
Suzanne:
Don't worry about
being long winded, that's what this group is here for. And there is no
such thing as a dumb question. As you have already seen on the list, there
is a wealth of knowledge and compassion here, so post away.
I live just a bit
east of you in Regina, and have a 17 year-old son (Stuart) diagnosed with
CML in March 2003. So I am quite familiar with the roller coaster you are
riding. The good news is that ACH in Calgary has a good pediatric oncology
group and I hear good things about the transplant unit as well. As a
matter of fact, if we end up pursuing a transplant that is where we will be
heading.
When Stuart was
diagnosed we were in Edmonton due the presence of their cardiology team (another
long story I won't bore you with) and therefore ended up connected to the
pediatric oncology group at the Stollery Children's Hospital at the University
of Alberta. They are also a fine group of oncologists there, but quite
frankly their knowledge of CML and treatment with Gleevec was quite
limited. In hindsight I realize now that we were all learning
together. CML is a relatively rare disease in adults and even rarer in
kids, so finding pediatric oncologists experienced with it will be
difficult. Which is why keeping up to date with the current leading edge
in research is absolutely critical for you as a parent. Having a
transplant center in Calgary is great, but since that is what the local onc's
are most familiar with that may be a default position for them. Especially
if they don't understand enough about Gleevec and the other stuff close to
the market. Of course, the exciting developments are still in the adult
oncology world and it will take a little longer before they sift down to the
pediatric population.
Not all FISH
tests are equal, and while I don't know the details of which is which (others on
this list can help there) I do know that the margin of error can be as high as
3-5% on some. So a move from .5-1% may not be significant, unless it has
been backed up with either standard cytogenics or quantitative PCR. I
would be cautious about using that as the only benchmark for moving straight to
transplant.
Stuart also
experienced a recent setback and began showing increased Ph+ and likely
resistance to Gleevec. While it took us a while to make it happen, he was
recently tested for mutations (we haven't received the results yet). I see
that information as critical to understanding what we are up against. Some
of the mutations respond to higher doses of Gleevec and also other drugs like
BMS.
This isn't our
first experience with cancer, as Stuart was diagnosed and successfully treated
for non-Hodgkin's lymphoma when he was 2. So we've been on this ride
before and have learned many lessons the hard way. Above all, no
one can read and understand your child as well as you, so learn what you can,
listen to all the opinions and advice along the way, and then follow your
gut. You may not always be right, but at least you can live with yourself
later.
We have family in
Calgary and will be spending Christmas there this year. If you're
interested, I'm sure my wife and I could find time for coffee and a chat while
we're there.
Rather
ironically, my wife Gail just recently had gallons of blood drawn (figuratively
speaking) for more testing as a possible bone marrow donor. We have been
on the list for years and she recently came up as a match. Needless to say
we are pleased!
Cheers
Allen
Lefebvre
(oh and for one
more coincidence, our younger son who turned 12 last May is also called
Adam!)
-----Original Message-----
From: bassverh [mailto:[EMAIL PROTECTED]
Sent: December 9, 2004 12:36 PM
To: [EMAIL PROTECTED]
Subject: [CML] Introduction
Good morning all
I've been reading posts for about a month and after current
developments I've decided to make an introduction. Our 11 year old
son Adam was diagnosed with CML in March of this year. He was put
on 400mg of Gleevac and seemed to be responding quite well. His
counts came down and he became FISH negative. We were expecting
molecular remission any day (any mother's wish) when we got a call
telling us his FISH had once again become positive. After another
test to make sure the machine hadn't malfunctioned we knew that he
was showing signs of resistance. His FISH went from negative to
0.5% to 1.0% They have increased his dosage to 800mg and as of
yesterday have noticed a few swollen lymph nodes under his arm. We
have been advised to start the transplant procedure and will be
having our "intake" meeting next week. Adam's brother is not a
match and there have been two matches (both 6/6) found on the
registry. We live in Calgary, Alberta, Canada and our transplant
center will be the Alberta Children's Hospital. I've asked about
the trial drugs and have been told that they are not available to us
(because of where we live or because he's a pediatric patient, I'm
not sure). Our doctor tells us that the procedure can be stopped at
any time (pre-condinioning of course) but we're currently looking at
late January, early February. I have great confidence in our doctor
I'm just extremely frightened about our son's future. Can someone
tell me what the swollen lymph nodes mean? Your postings have been
a great comfort and an incredible source if information. Until I
read the postings regarding the nose problems I just assumed my son
was being a typical boy. Our doctor suggested using vitamin E from
a capsule. Anyway, sorry to be so long winded. May God Bless you
all and keep you strengthened.
Suzanne
GOD IS WITH US WHERE EVER WE ARE CALLED TO GO
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