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Submissions to "Patients' Stories" cannot be verified for their accuracy. They do not necessarily represent validated medical research. The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Research Foundation.
I am 35, and the mother of five children
(ages four months to nine years). My first HCL diagnosis occurred when
I was pregnant with my third child (and 30 years old). I had gone in
for blood work when I was five weeks pregnant, and the results indicated
something was wrong. had recently gotten some really big
bruises, but I'd always bruised easily. Our pastor's 9 year old
daughter had just died of leukemia, so I was familiar with talk of low
platelets. Still, I felt fine and was sure it was all a big mistake.
I was sent to a hematologist and he told me
that he didn't know what was wrong, but I did not have cancer. His
plan was to monitor me for awhile and see what happened. It was
about two months before someone in the lab noticed hairy cells under
the microscope and a bone marrow biopsy was performed to confirm
the diagnosis (by that time, I was three months pregnant). Upon
hearing the news, I jokingly asked my oncologist if there was some other
name we could call it ("hairy cell leukemia" is not exactly a
feminine sounding disease). While no leukemia is a good leukemia, we
felt very relieved as HCL seemed very treatable.
The pregnancy went well, with my platelet
count ranging anywhere from 60,000 to 120,000. We were told the
disease should not affect the baby's growth/health at all, and I delivered a
healthy baby girl on Nov. 2 of 2000. By then, my counts were
quite low (platelet count was 47,000 on the day I delivered), and I began
treatment with 2CDA just three and a half weeks postpartum.
The first three days were a breeze. Day
four I started to lose my appetite. Day five I could tell I was
getting sick, and by day six I felt extremely nauseous, weak and
"out of it." My doctor put me on an oral antibiotic (Levaquin),
but I ended up in the hospital on day 7 with a 104.5 fever. My
white cell count dropped to an amazingly low 0.04! I was in the hospital
for 9 days--was on several heavy duty antibiotics (vancomycin, to name one)
and had two blood transfusions. My little boys' (ages 3 and 5 at
the time) one week stay with my parents had turned into four weeks, and my
husband had been contending with a newborn at home, so after much begging
and pleading I was allowed to go home right before Christmas, giving
myself daily neupogen shots.
I was declared "officially" in
remission in Jan. of 2001 although that was based on blood work only (a
repeat bone marrow was never done--in hindsight, probably a mistake).
My husband is in the military and three
months into my remission we had to pack up and move. I began
seeing a new oncologist for check-ups every six months, and he assured me
that 2CDA was considered a cure. The only health problems I
experienced from 2001 to 2003 were a stomach virus, strep throat and a
thyroid infection, which resolved itself after a few months.
In Nov./Dec. of 2003 (remission time, three
years) we flew to China to get a little girl we had adopted--child
number four for us. While there, I got a bad cold from another
American we were traveling with, and it quickly turned into a whopping sinus infection
that lasted four months. I was wiped out and kept going to the doctor seeking
help. I had two rounds of antibiotics (Levaquin) that didn't
get rid of it. My primary care doctors were various military
doctors who didn't take my condition seriously (they doubted I even
still had a sinus infection despite my symptoms). One, an internal
medicine doc, even referred to me as a "postergirl for overuse of
antibiotics." Finally, a third and fourth round (back to
back) of antibiotics were prescribed by my oncologist, and the sinus
infection went away. By then it was May of 2004. My white cell
count was a little below normal, but none of my doctors thought much of it
considering I had been sick for so long.
Once again, it was time for us to move,
our eighth move in 12 years. We were used to living away from
family, but this move was big--from Colorado to Connecticut, where we
would be clear across the country from family. We arrived at our new
assignment in August of last year (2004) and were surprised, just 10 days
later, to find out I was pregnant. I had extreme morning
sickness during the first trimester, and my white cell count was still
a little low. No one thought twice about it. Around Thanksgiving I
started getting one virus after another (five viruses in six weeks). I
asked my OBGYN to do a blood test, which ended up showing some problems.
It was deja vu.
Like the first time, I didn't think there was
anything wrong and suspected people were now overreacting because of my
history. I never dreamed that I would relapse. However,
more tests showed immature white cells in my bloodstream, and I realized
that meant trouble. I was sent to an oncologist in Dec. and tests showed it
was HCL again. At first, the diagnosis was a huge relief because it
meant I didn't have ALL. But then the reality of having relapsed
set in, and I struggled with a lot of "whys," including
guilt over whether or not I should have changed my eating habits after
the first bout with HCL--you know, like not eating processed foods, etc.
I have been a vegetarian for 13 years but wondered if I should have made
other changes. My new hematologist said HCL was not caused by my
pregnancies but probably was exacerbated by them since the immune system is
compromised slightly during pregnancy. She surmised that my relapse
was due to residual cells from my first bout of HCL. Looking back at
my blood work over the months/years, it is clear that my immune system was
compromised by the time I had the raging sinus infection.
Interestingly enough, I had a sinus infection right before I was diagnosed
with HCL the first time (in 2000), so sinus infections either set it off in
me or they are the first sign/symptom that my immune system is weakened.
After the relapse it also took some time to wrap my brain around the fact
that HCL might be more of a chronic problem than I had anticipated. In
2000, 2CDA looked like a permanent (or a least very long term) fix. To
end up with only three years of remission was disappointing.
The month of Feb. went fairly well except for
the fact that I couldn't sleep. I averaged 2-4 hours of sleep per
night and was also unable to sleep during the day. In March, at seven
and a half months pregnant, I started having pain in my lower back
(if felt like back labor) and went to the doctor on a few occasions to
have things checked out. They told me it was just my body gearing up
for labor. I told them I knew I wasn't in labor but that I had never
experienced that kind of pain unless I was in labor. It was a long,
torturous four weeks!
Then, in the early morning hours of April 5,
2005 (just three days before my scheduled c-section), I had a placental
abruption, in which the placenta tears away from the uterus. I was
hemorrhaging like crazy and continued to bleed for a full hour from the time
my husband called 911 to the time the ambulance arrived at the hospital.
It seemed like it took forever for the EMTs and paramedics to
"assess" me at the house. Despite all the blood, the
continued hemorrhaging, and the absence of any contractions, they thought I
was just in labor. I was in and out of consciousness and knew
something was terribly wrong. At the hospital the staff took one look
at me, found that the baby's heart rate was 50 (normal is 120-160), and an
emergency c-section was performed. They called it a crash delivery,
and they had the baby out within 10 minutes of our arrival to the hospital.
They told us if they had gotten to the baby just two minutes later, he would
have died. As it was, his APGAR score was a 1, and they had to use
life saving equipment to get him to start breathing. He was in intensive
care and they warned us of possible long term brain damage, cerebral palsy,
and/or seizures. Thankfully, our little boy made an amazing
recovery, and the hospital staff referred to him as a "miracle
baby." He is four months old now and showing no ill effects from
his traumatic start.
I received two whole blood transfusions
during surgery, but my counts were still well below normal (my hematicrit
was 24 even after the transfusions). My high risk OB is convinced that
the placental abruption is related to the HCL, but I'm not so sure. I
was told that I had been bleeding internally for weeks (hence, the back pain
I had been having) and had bloodclots the size of baseballs. One
positive result of the whole thing is that we had stem cells collected from
the baby's cord blood, and instead of getting 3-4 vials (which is normal),
they got a whopping 8 vials (a direct result of the placental abruption).
Granted, I hope no one in our family ever has to use them, but it's nice to
know they are there.
At two months postpartum I began four
weeks of immunotherapy treatment with Rituxan (my last treatment was
July 6th, 2005). My oncologist thought it would be better for me
than repeating the 2CDA because it is less toxic. She also said that
2CDA was not the "magical cure" that people once thought and since
I had gotten so sick from it the first time and had so many children to take
care of, she wanted to try Rituxan. Although I was not incredibly
impressed by the few clinical trials I read about, I realized the treatment
certainly couldn't hurt. My hematologist told me most people don't
even know they are getting the Rituxan--it's that easy. However, I got
really sick during the first treatment--my blood pressure dropped
dangerously low, my bone marrow was aching all over, and I started
vomiting. I also experienced a lot of stomach and bowel problems in the
week after. The next three treatments went better as they knew how to
premedicate me (Benadryl, Tylenol, Ativan, a steroid and an
anti-nausea drug). I did, however, find myself quite tired during the
duration of treatment.
My white cell count dropped to 1.4, absolute
neutrophil count went down to 500, and my hematicrit was 27 /
hemoglobin 9. I had two
red cell transfusions and have had two epogen shots. Now we're just
waiting... I will have bloodwork again in a couple weeks. My
lymphocyte count has gone from 61 to 31, so I know the rituxan is working.
Whether or not it gets rid of all the hairy cells remains to be seen (they
will be doing peripheral blood flow tests and are planning a bone marrow
biopsy down the road). My white cell count remains low--1.7 (absolute
neutrophils 1000)--but not too worrisome. Rituxan works slowly--over a
period of 6 months or more--so I don't expect to have a clear picture until
Jan. of 2006.
I'm not sure what to expect... There
have only been a few clinical trials using Rituxan on HCL patients.
In one, the median remission was just 21.2 months. However, some
people have been in remission three years and counting. They tell
me if the HCL were to ever come back, I could be retreated with the
Rituxan again and again. My only concern is that Rituxan is
relatively new, and I'd hate for them to announce years from now that
repeated exposure causes secondary problems.
For now, I am enjoying feeling more like a
normal person (as "normal" as the mother of five can feel!).
I am a Christian and though I don't know why God allows certain things to
happen, I have to trust him. I CAN say that I am no longer afraid to
die... During the placental abruption, when I was losing consciousness
and thought I might be dying, I felt complete peace and
acceptance/surrender. There was nothing scary about it. As a
mother, my instincts are self preservation for the purpose of being here for
my kids and getting to watch them grow up, but at that moment of crisis, I
KNEW that God held them in his hands and would take care of them better than
I ever could. The feelings I had and the peace of mind I
experienced are things I will carry with me for the rest of my life,
and that is a blessing!
My e-mail is ratefam@comcast.net.
Please feel free to contact me. Sincerely, Kim Rate
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