Thanks to all for calling and for writing, for good wishes and
In order to pass along accurate info about what is going on, and
to reduce the number of times I have to repeat the story by
phone or by email, I felt it would be a good idea to set up a
website journal. Anytime anyone is interested in seeing how
things are going, please just drop by this page for the latest
update. THE LATEST NEWS IS AT THE BOTTOM.
Dec. 1 -
I lost 20 lbs. without explanation over the last few months.
While you hate to look a gift horse in the mouth, I go to my
Doctor of 25+ years for a physical to make sure everything is
OK. She does a physical and pulls blood. She tells me I have an
enlarged spleen. She gives me a script to get an abdominal CAT
scan. I make an appointment for Friday Dec. 12th.
- My MD calls. I have an enlarged spleen and high white blood
count and she thinks I have CML. I need to go see a
Hematologist (AKA Oncologist). Talk about a life changing
She has already made the arrangements for me to see him on Dec.
4th. I confirm that appt. and Tom and I Google search the web
for CML. We learn a great deal of info. It means Chronic
Myeloid Leukemia. It is cancer. I call my friends, a Chemist
and a Hospital VP. They do research and what they find out
doesn't look too good. One of them Fed Ex's 40 pages from New
England Journal of Medicine dated Oct. 2003. Based on what we
learn, I move up my CAT scan to Thursday the 4th.
- Tom and I go to Overlook Hospital. I have an enlarged spleen
and also an enlarged liver confirmed by the CAT scan done that
morning. They do more blood work which shows my white count is
so high the lab machine can't count it. It just comes back >>>>
instead of a number! They need to get a better lab machine.
The Doctor puts me on Hydroxyurea, a pill form of Chemotherapy
and on Allopurinol which is to avoid side effects of gout caused
by the Chemo. He gives me the names of three Oncologists/Bone
Marrow Transplant doctors. I try to make appointments but they
are all away in San Diego, CA at a conference. I call my
Oncologist back. He arranges an appointment for me on Friday
Dec. 12th at The Cancer Center at Hackensack Medical Center.
We tell my parents the bad news. Probably the hardest thing I
have ever done.
- My 5 youngest dogs go to a friend's kennel to help ease the
load at home. I contact more friends and start to arrange
potential foster care for all of my dogs. The response is
overwhelming. Every dog has a place to go, if need be.
- I see the Oncologist in the late morning. My brother goes with
me to arrange having his blood tested as a possible Bone Marrow
I have been chromosome tested, but they do not have that test
result back yet. They do more blood work but their machine
still reports my white count is so high the lab machine can't
count it. The Doctor doubles my Chemo pill dosage.
- My brother gets blood drawn. I call the Oncologist's office
and my lab results are in but the doctor is not, we have to wait
- The oncologist calls in the afternoon, the chromosome lab
results are in and my diagnosis is confirmed as CML - Chronic
Myeloid Leukemia. I have several of the Philadelphia chromosomes
present in my blood. Tom and I have the worst night of our
- We see the specialist at Hackensack. He is very straight
forward and an excellent teacher. He is speculating that I am
still in the Chronic stage based upon my clean blood work from a
physical 18 months ago. He writes me a prescription for Gleevec
and renews the Chemo pills. They do both bone marrow and bone
chip biopsies (withOUT anesthesia I might add - I almost passed
out from the pain). He also is running additional chromosome
tests, the reason for which we didn't discuss, which was OK
because Tom and I could only absorb so much information. I have
been on Hydroxyurea (oral Chemo pills) and Allopurinol for about
10 days so far. I will start adding Gleevec to the regiment.
Not to forget my 40 mg of PROZAC daily!
Tuesday, Dec 16th, I should get the results back about which
stage of the disease I am in. If I am still in the 1st
so-called chronic stage I have a 70% chance of remission using
the Gleevec drug. If I am in the acute stage, the prognosis is
not too good and most likely a bone marrow transplant would be
the only option. However, even with a BMT few survive.
and I leave Hackensack with renewed hope and we have lunch with
a friend to celebrate getting a prescription for Gleevec. I
call family to inform them of what we have learned and the
pharmacy to ask them to get the Gleevec ordered. We drop the
scripts off at the pharmacy on the way home. The Gleevec should
be in on Monday.
- The pharmacy calls that my Gleevec has come in a day early.
Tom shovels out the car from under the snow and gets the pills,
a 30 day supply. The kid at the counter hesitates because the
CO-PAY amount is $563.55. Tom gives him our trusty Master Card.
The actual cost before insurance is about $2700.00 for a One
Month supply. We go to Sunday Dinner at Mom and Dad's house. My
brother has told his kids, ages 7 & 11, about my disease. At
dinner, as I take my 1st Gleevec pill, I ask everyone to make a
toast to Novartis and the research scientists who created the
- I write this webpage journal since info is spreading so
quickly that it is getting passed along inaccurately. Also,
while it is great to hear from my friends and I welcome the
amount of love and wishes I am receiving, I do need to get some
extra rest right now. I hope my friends will think this journal
is a good idea.
- I called Hackensack and the nurse just told me the blast cell
count from the bone marrow biopsy had less than 2% blast cells.
They are still waiting for the rest of the biopsy results and I
am to call Dr. G. back tomorrow.
I am cautiously very optimistic.
- I called Hackensack Univ Med Ctr and left a message for the
doctor. 4 hours later, the nurse called back and told me that
Dr. G. said my marrow looks fine under the microscope. I asked
if that meant I was in the Chronic Stage. She says that the
doctor says he is optimistic, but cannot say for certain until
he gets all of the test results back. They are still waiting for
the genetic studies to come back. They are looking for any
other abnormal chromosomes, besides the Philadelphia chromosomes
they have previously identified. I am to call them back on the
So we wait
informed me I have to have weekly CBC counts done, so that is
now arranged for every Friday morning at Overlook Hospital
Dec. 19 -
They say never
underestimate the power of prayer.
I went for my 1st weekly follow up blood work at Overlook
Hospital. Good News!
My White Blood Count is back to normal after exactly two weeks
on the Chemo and only 6 Gleevec pills. Dr. L. also looked at
the peripheral blood under the microscope and it looked good.
He says that I can stop the Chemo now and just continue taking
the other two medications, Gleevec and Allopurinol. I will
continue to have follow up blood work done every week so we can
adjust my meds accordingly.
Dr. G. at Hackensack
just left a message on my voice mail. He said "GOOD NEWS". The
cytogenetic results came back and they showed just the
Philadelphia Chromosome. The Bone Marrow, the Flow Cytometry
and the Cytogenetics all show that this is early in the
disease. He is writing me a long letter explaining everything
and that the treatment of 400 mg a day of Gleevec is the right
treatment at this point. He is turning my care over to Dr. L.
Allogeneic Bone Marrow
Transplantation (BMT) is the only known treatment that results
in cures of CML. That means a sibling donor match. My brother
Tommy's blood test results have not come back yet. BMT is not
recommended at this time. The best we are hoping for right now
is remission. Then we hope I can stay in remission until they
discover a cure other than BMT.
Tom and I have a deal.
If I am in remission by March, he is going to buy me a Ruby
ring. I think he had better start saving his allowance!
Thanks everyone for
all of your prayers and good wishes. They seem to be working!
Have a great weekend, Laura
- Went for my weekly blood test. Now my white cell count is too
low. That means my immune system is depressed and I need to be
careful about not getting exposed to anyone who is sick. Also my
blood pressure is up.
If the WBC is
still low next Friday, then I may have to stop the Gleevec for a
while. I'll know more next Friday 01/02/04.