Mr. Nault
You are a true unspiration to us all if i might
speak in such a way. Your story sheds light on dark
times; as well as proves that there is hope in the R&R
of new drugs for our fight. We know in the back of our
minds that there is indeed light at the end of the
proverbeal tunnel, but in the same thought we are
scared to death. There is light people i know it.
This weekend we had our annual "Relay For Life."
it was to say the least amazing. So many devoted
people, some many willing to bend over bacwards to
help in any way the could to help find a cure.
As me, my wife, and our 6week old baby walked
around the track with our church group at the local
high school, i looked at the luminaries, and all the
names, i saw the survivors, and I realized things can
only go forward, if not for me, maybe for the youth
who were oblivious to what they where really doing
there other than just walking in circles.
I would be lying if i said that when i was
diagnosed that I was not scared out of my mind having
just lost my Step-mother on Thanksgiving day to cancer
that they did not know where it began, but just that
it was all over her, and 5 years earlier my
step-father to pancreatic cancer, they where given no
chance at all, but i know now that "we all" have a
chance, and i will live with that in mind, and so we
all should.
I know i have rambled, but the events of the past
weekend, and your post have inspired me to let it all
out. Thank you. I have been a closed body locked in a
corner of a room. I had almost given up on me but now
i strive for all. Thank you all.
Love & prayers
Roger (5/04 400mg), Fawn(wife), and Landon(son)
--- cmlguy <[EMAIL PROTECTED]> wrote:
> --- In [email protected], "pennyam1"
> <[EMAIL PROTECTED]> wrote:
> > Have any of you had the experience where you began
> on 400 mg then
> 600
> > mg gleevec and not had them work and then been put
> on 800 mg and had
> > that finally put you in remission? My son was on
> 400mg for 2 years
> > and all of a sudden his tests weren't good so a
> couple of months ago
> > they jumped him to 600 mg. and his PCR just came
> back at 14% so they
> > are increasing him to 800mg. I am just wondering
> if this might do
> some
> > good or if we need to be worried and looking into
> something else,
> like
> > BMT. I will appreciate any help or info you care
> to share. Thanks,
> > Penny M.
>
> Hi Penny,
>
> I fall right into that catagory you are talking
> about. Here is a
> posting I put out back in early 2003............
>
> Hello there fellow CML'ers, I have not posted in a
> very long time
> (Post 45065 & 45197 back in 2001, when I found out I
> was in the
> advanced stage of the disease) but I have an amazing
> story to share
> with you.
>
> First a quick history review,
>
> I was diagnosed in Feb 1999, with a white blood
> count of 380,000. A
> BMA confirmed I had Leukemia. I was hospitalized for
> over a week and
> took too many drugs to remember to have my counts
> brought down. The
> Doctor's told me that my life expectancy would be
> 4-7 years and the
> best option I had was a bone marrow transplant from
> someone in my
> immediate family. Everyone in the family was tested
> but no one was a
> match.
>
> My next option was interferon. I went on a study
> comparing PEG
> Interferon Vs regular Interferon. We tried different
> dosages with a
> mixture of Hydroxeria to keep the counts down but my
> platelets would
> continually crash. I was told I would have to have a
> splenectomy to
> keep the platelets from crashing. In October of `99
> I had my spleen
> removed. When my BMA's were showing that the
> Interferon was having no
> effect I was remove from the study and classified as
> a non-responder.
> (May 2000)
>
> Soon afterwards I was placed on the Interferon +
> ARA-C combo.
> Although this combo kept my counts stable I still
> had no cytogenetic
> response and in March of 2001 I once again was
> classified as a non-
> responder. This made me eligible for the Gleevec
> study. Yahoo, I was
> ecstatic! I started at 400mg a day and my counts
> were immediately
> under control. Quality of life had improved greatly.
> I was feeling
> better than I had felt in a long time.
>
> Six months later my Bone marrow test showed
> devastating results. The
> results showed that I had advanced to the
> accelerated stage with a
> complex rearrangement of chromosomes 12 & 13. My
> medication was
> increased to 600mg a day and after three months in
> addition to the
> abnormalities I also developed a deletion of
> chromosome 9. Things
> seem to go from bad to worse and I decided to go see
> a CML specialist
> at OHSU.
>
> I was referred to Dr Mauro (What a nice guy) and I
> had my first
> appointment on March 5th 2002. After reviewing my
> case he mentioned
> that the next 12 months were critical and that we
> would have to try
> different things every three months until we found
> something that
> worked. He was very optimistic and I remember
> leaving Portland
> feeling like I was in good hands. The first step was
> to increase the
> dosage to 800mg a day. We would do that for a period
> of 6 weeks (I
> was having a BMA 6 weeks from then) and if that
> didn't work we would
> have to try something else (Gleevec + ARA-C, Arsenic
> etc)
>
> After the six-week period my pH dropped from 78% to
> 37%. I still had
> the rearrangement of chromosomes 12 & 13 but the
> deletion of
> chromosome 9 was gone. I sent the results to Dr
> Mauro and he
> suggested I stay on Gleevec at 800mg a day. My next
> BMA showed a
> decrease in pH from 37% to 11% with no
> abnormalities. Back to the
> chronic stage! (Yahoo!) In August 2002 I was back in
> Portland to see
> Dr. Mauro and he said that although we still had to
> be vigilant, it
> seemed to be working and I should stay on 800 mg a
> day. Three months
> later my pH decreased from 11% to 5%. I hadn't
> reached zero but Dr
> Mauro agreed it was time to celebrate.
>
> Last week I received my latest BMA and the results
> show 0% phillies.
> (Yahoo!!) As if this story weren't amazing enough in
> itself, there's
> more,
>
> When I first had my visit with Dr Mauro I asked him
> about the
> possibility of having children while on Gleevec. (My
> wife and I had
> been trying for 7 years before I was diagnosed to no
> avail.) He
> explained in detail why there should not be an issue
> for us to start
> trying again. (Something other Doctors told us we
> shouldn't do).
>
> On December 28th 2002, my wife gave birth to our son
> Mathew. A
> beautiful 7 pound 7-ounce baby boy!
> We picked the name Mathew for it's meaning " Gift of
> God" which he
> truly is. We are truly blessed!
>
> Moral of the story, never give up, you never know
> what tomorrow will
> bring.
>
>
> Louis Nault
> Montreal, Quebec, Canada
>
>
>
>
>
>
>
>
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