Hi my friends,
Once again thank you for sharing your experience of using the Interferon. As
of Sunday my dosage was lowered to 0.15 cc. I know it is very low, but this
coming Friday my dosage will be increased and then every week or two they will
be increasing the Interferon until my body says NO MORE. I can't imagine that
yet, but I will let you know when it happens. Then they will leave me at the
tolerable dosage for couple of months. I believe that I sent the trial
information to the group, so as you know if I am doing well on this and my CML
will not be detectable 3 months in a row, they will cut me off all the
medication. I can't imagine that, but I can tell you that every night before I
stick myself with two injections I think about it. Can you imagine to be off
the Gleevec to see which side effects will disappear? And most importantly my
oncologist will work with me to become pregnant! So I really hope that this
trial results will be valuable not only for my own good, but
also for all the CML patients. Maybe it will not be a miracle in the CML
field, but maybe it will bring more light to the treatment options, prolonging
of the survival and ... I don't know what else. Once off the Gleevec, I would
like to start planning a family.
Just to clarify for people who asked me, I did not relapse Gleevec treatment.
I am doing it voluntarily with the hope to get a Gleevec break and become
pregnant under pretty safe conditions.
I definitely can tell that people who were diagnosed in the pre-Gleevec era
with CML and took higher doses of Interferon only experienced totally different
side effects and emotions as we do on Gleevec. Since my dosage was lowered by
half, I do not experience any bad side effects, but a headache and today I got
two little fever blisters on my lips. They are very sexy J Oh, how much I hate
them. Maybe as my dosage of Interferon will increase, I will feel sicker and
will report more side effects to the group.
By the way is there anybody in this group who is on
Gleevec+Interferon+Sargamostim or Gleevec+vaccine trial? Or is there anybody
who was on this trial and finished it? Just curious.
O.K. this is my update for today. Thank you all for your support.
Livia
Suzieq <[EMAIL PROTECTED]> wrote:
Skip:
Thank you for your reply...........it's amazing......& yes, sometimes
just a good old down to earth family doctor is better than all the
specialists lined up in a row. I've been blessed with having a couple
of those in my life time.......my last recently gave up his practice.
Since my diagnosis Jan. '04.....I've had five different Onc./Hem. &
out of all of them, the second one I truly loved and felt that he was
probably the most knowledgeable of all.......he moved to Atlanta about
six months after I started seeing him. I'm still going to the same
place......& the doctor I have now is a young woman who began her
practice a couple of years back. I studied up on her before & saw
where she worked along side the doctor that I loved during the trial
phase of Gleevec while she was an intern. So, I decided that was
enough to convince me to stay.......plus, I've pretty much been
"healthy as a horse" (my husband's saying) since Gleevec took over and
did it's job.......I sort of figured they would have given me over to
someone else if I had been a lot sicker. (smile) The last two visits
I've made.....I only saw the nurse practitioner that works for
her......I told my husband that pretty soon they may just have me
"phone in".....(smile). But, I do love where I go at the Sitemen
Cancer Center at Washington University in St. Louis...the labs are
great......the last couple of times I've had blood done....I didn't
even feel the "stick" which is good because I am a big baby when it
comes to needles and blood.....I have passed out so many times in my
past, I use to ask if I could lie down somewhere. LOL In the
beginning after first being diagnosed, I took someone with me to keep
me focused on them instead of what the lab tech was doing and that
helped. But, sad to say, I think I have gotten use to it now and it's
a "breeze" unless I get one of those that lets you sit in the chair
too long and think about it before hand. I can get myself pretty
worked up then. LOL! My blood work has been good.....a little on the
anemic side....but nothing to extreme. Only one time did they take me
off my Gleevec for a week to allow the counts to come back up and that
was about a month after I started it.
Thank you for sharing your story as well as some of the others who
have survived CML for years before Gleevec. You inspire us.
Keep Looking Up,
Suzieq
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