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Chronic Lymphocytic Leukemia
| | | The Lightning Bolt | |
In 1989, I had reached the half century mark, and was looking forward
to another 50 years of travel, work, and enjoying my family, when out of
a clear blue sky came a lightning bolt.
My husband of 30 years, was bugging me to have my cholesterol checked.
It seemed to me that the entire country was cholesterol crazy! Finally,
in self defense, I went to our family doctor for the blood work.
Two days later I received a call, "Barb, I think there's something
wrong with the blood sample. Please come in and let us run it again."
The next day, I hopped in the car after work and went in to have
the blood work done again. Since I was sure it wasn't anything, I didn't
even ask what the problem had been.
That Friday, the doctor called again. "Barb, I need you to come
in to the office. We need to talk!"
And so the lightning bolt struck! My white count was over 20,000,
my lymphocyte count was high, and there were some strange smudge cells
in the blood. His diagnosis: B-Cell Chronic Lymphocytic
Leukemia. A subsequent visit to an Oncologist and a bone marrow
biopsy only confirmed what the blood tests had shown. I did, indeed, have
B-CLL.
 | | | About Chronic Lymphocytic Leukemia | |
What was this disease and how could I find information about it?
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ACOR (Association of Cancer Online Resources)
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Grannybarb and Art's Leukemia Links Medicine and Leukemia web sites.
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Chronic Lymphocytic Leukemia Locations CLL related information and websites
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The list of Frequently Asked Questions about CLL created by David Thomas for the CLL List.
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CLL Internet Support List Home Page
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Interact with the CLL list, join, leave, or change your list subscriptions. You can search the archives once you are subscribed. If you'd rather do it via email:
Send an e-mail to: listserv@listserv.acor.org
Leave the subject blank and in the body of the message put only: subscribe CLL your first and last name
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CLL List Survey done May-June,
1998 provides interesting statistics about CLL diagnosis,
staging, and treatment.
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Hem-Onc Internet Support List
for Leukemia, Lymphoma, and Multiple Myeloma Home Page.
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Interact with the Hem-Onc list join, leave, or change your
list subscriptions. You can search the archives once you are
subscribed. If you'd rather do it via email:
Send an e-mail to: listserv@listserv.acor.org
Leave the subject blank and in the body of the message put only:
subscribe HEM-ONC your first and last name
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Other Leukemia Survivor's
Stories
Once I did my research, much of it through the internet, and felt
I knew what I was dealing with, I began keeping records of the progress
of the disease.
| | | White Counts Onward and Upward | |
I had read that CLL was an indolent disease with slowly rising white
counts. Unfortunately, my white counts didn't read the same literature!
I watched them climb from 16,900 in September 1989 to 40,100 in July of
1990. Luckily the important red blood counts were remaining in the normal
range, and lymphocytes were in the 75% range that September. We still watched
and waited, since my Oncologist didn't feel that treatment was warranted.
All the research I had done concurred with this watching brief.
By December, 1992, white counts had reached 100,600, lymphocytes
were 99%, and all the important red counts were way down. Also, I had enlarged
lymph nodes in the neck and underarms, although there was no spleen and
liver involvement. Moreover, I was having night sweats and I was exhausted
constantly. Now it was time for treatment. Of course, in typically GrannyBarb
fashion, when the Doctor said, "We'll start treatment next week",
I objected.
"No, I have a houseful coming for the holidays. We'll have to
start the first week in January." And so we did.
| | | Treatment Begins | |
I was offered the chance to participate in a drug trial using randomly,
either chlorambucil alone, fludarabine alone, or a combination of the two.
After much discussion over the ten day holiday hiatus, my husband and I
decided to opt for fludarabine since it offered, what appeared to be the
best numerical odds for remission. Once that decision was made and the
Doctor concurred, there was no question of participating in the drug trial,
because if I took part I would have no control over what drug I'd be assigned.
I went to work the first Monday following New Year's Day knowing
that I would be receiving chemo that afternoon. I had a huge sinking feeling
about facing the unknown, and I wondered if I could handle chemo and work
also. I went into the treatment room and the Oncology Nurse inserted a
small needle in one of the veins in my hand. Then I watched the fludarabine
drip steadily into my veins. Thirty minutes later, I walked out of the
room and drove home. That's how it went for an entire week. No real nausea,
no hair loss, no discomfort, but I was still tired all the time.
| | | First Remission | |
One week of chemo every afternoon for five days each month for the
next five months, and by June, 1993 I was in remission with all the blood
counts looking good. That's not to say there weren't some really trying
times when constant sinusitis, plain old nervousness, and too much stress
led to frustration, anger, and the periodic pity party! Concern about low
platelets and continuing anemia had also been a worry. Nevertheless, all
things considered, by the time I'd had the 6th course of chemo, I felt
very lucky. I was in remission and I could relax about the cancer.....Couldn't
I?
Bloodwork for this section of the story
Biopsy slides, 1994
M D Anderson Clinical Trial and
Second Remission
Pathology workups from M D Anderson through
Feb,1996 and reports on the initial slides from St. Luke's Hospital
Unfortunately for me, by October my white counts were again climbing
and the lymphocytes were doubling far too quickly. By March, 1994 we knew
that I was going to need treatment again. With the agreement of my Oncologist,
I went for a consultation at the M D Anderson Cancer Center (MDACC) in
Houston, part of the University of Texas Medical Center. They placed me
on a clinical drug trial using fludarabine (Fludara) and mitaxantrone (Novantrone).
This protocol has since become a Southwest Oncology Group protocol (SWOG).
This time I was an old hand at the chemo process and my comfort level
stayed high. Treatment began April,1994 was carried out by my local Oncological
Team, and ended in October, 1994. At that time, tests done at MDACC showed
me to be in complete remission (defined as having less than 10% cancer
cells in the marrow).
Harvesting for Peripheral Blood
Stem Cell Transplant
In February, 1995 I went down to Anderson again for a bone marrow
harvest. This time the Bone Marrow Biopsy showed nodules of cancer cells
still present in the marrow, although I still fit the clinical terms for
complete remission. Since they couldn't harvest marrow for fear of unintentionally
harvesting from a cancerous nodule, they did apharesis for peripheral blood
stem cells exhibiting CD34 instead. Two batches (one purged and one not)
of those stem cells presently lie frozen at the Cancer center, waiting
for this remission to begin to fade. Then I shall likely have the Peripheral
Blood Stem Cell Transplant (PBSCT).
| | | On the March Again | |
In December, 1995 blood work results indicated that my white count
was above normal again, although the lymphocyte counts stayed within the
normal range. By January, however, both sets of counts were high and the
red counts were dropping. The CLL was on the march again.
"What's the next step?" I asked. "I'm concerned about
the rapid lymphocyte doubling time."
"Let's call M D Anderson and see what they recommend,"
said my Oncologist. With his usual thoughtfulness, he followed through
immediately, and I received a call the next morning at work that he had
arranged for me to go down to Houston for a consultation.
| | | MDACC Here I Come .... Again! | |
Off to Houston we went, with fear and hope equally mixed. Stayed
at Rotary House International, run by the Marriott Hotels, owned by MDACC,
and the most welcoming facility for cancer patients. Their library and
patient information center is great, their people are helpful and bilingual,
and their care and concern is evident in all they do. The rooms are pleasant
and many have mini-kitchens. There's even a deli in the hotel so one can
take food up to the room if one prefers.
Of course, my first clinic visits involved having blood samples drawn
and having a bone marrow biopsy. The phlebotomist I encountered this time
was really grand. She found my only available vein and drew blood until
it stopped producing. Then the fun began. There were no other veins, so
we agreed that it made sense to use the veins in my hands, which haven't
fled from the needle quite yet! She explained that she hated to do that
because it is more painful that way, but I'm becoming inured to that pain,
and at least the blood was drawn successfully.
Many of you will read this sentence with disbelief, but the bone
marrow biopsy was easy and painless! No, I had no Versed before it was
done! The techs who do biopsies at MDACC use enough painkiller, wait long
enough to ensure that it takes, and talk one through the procedure so well,
that all one feels is the heaviness of the pull as the biopsy is done.
The aspiration of marrow is not a problem. Moreover, I walked away from
the hospital after the procedure with a minimum of discomfort!
| | | Another Curve | |
Consultation with the BMT Specialist was next on my list. After reacquainting
himself with my chart, and conducting an examination, he threw me a curve.
"Because typing procedures are more sophisticated now, let's
consider a slightly mismatched related Peripheral Blood Stem Cell Transplant
(PBSCT). Will your children be willing to be retyped?"
Fortunately, I knew the answer would be "yes", and that
was what we determined to investigate as the next step.
During the exam, the BMT specialist also indicated that he thought
he could feel some spleen enlargement, so a CT Scan was arranged. Now that
was a whole new experience. Nobody warned me what was in store for me!
You must imagine my shock when I was faced with 3 huge glasses of
white chalk, alias Barium, that I had to drink over the course of a 90
minute period. They also attached a needle into my one available arm vein
to be used when the colored dye was infused. Then I was escorted to the
CT machine and placed on the movable bed. This was one of the new open
machines, so if I had been claustrophobic it wouldn't have mattered. The
dye was infused and I held my breath when requested. No pain, no tingling
from the dye, no trauma, and I was allowed to go home....with no warning
that something had been added to my chalky drink that would force me to
evacuate that material from my system. My seat mates on the plane could
not have been too happy, because I visited the restroom all too often on
the trip home.
MDACC was to present my case to their Review Board and I waited for
test results. A month later I knew that I was OK'd for the PBSCT, but it
was going to have to be done with my own stored cells because none of the
children matched again.
To BMT or not to BMT? That is the
Question
In the meantime, I used the Internet to get information and make
contact with several other top specialists in CLL. The MD's split evenly.
Half said, "Go for the PBSCT!" The other half said, "The
results of the follow up studies show that people who have had autologous
(using their own cells) transplants are relapsing earlier than was anticipated.
Try some more chemo first and wait until the PBSCT is more technologically
advanced." There I was, in Limbo!
At a subsequent visit to my Oncologist, we discovered that my white
counts had dropped, no lymph nodes were presently enlarged, and my red
counts were still normal. So we decided to enter "watch and wait"
mode for the next two months. Reprieve!
| | | Barb of the Limbo Lost | |
So came the fateful day...two months had elapsed and it was May,
1996. My husband and I waited in the MD's examining room to hear the results
of the complete blood count (CBC) and platelet tests. "Your white
counts have more than doubled and the lymphocyte percentages are climbing
again. Your red counts and platelets are just on the bottom of the normal
range. Have you decided what you'd like to do?"
The last comment was an "in" joke on my internet information
gathering activities, of which I have kept my Oncologist well informed.
"Yes," I answered, "I've decided to let you decide! I know
just enough to be dangerous to myself and others, but not enough to make
this decision."
"Then let's try a few courses of chlorambucil."
Here was another curve! The last time we'd talked, the two options
for treatment were a combination of cytoxan, vincristine, and prednisone
(CVP) or the PBSCT. Now he was tossing me
a new ball, nitrogen mustard, in the form of chlorambucil, which has been
the standard first line therapy for CLL for 32 years. I had never been
on it before. It had been recommended, by one of the better known CLL experts
with whom he had spoken, that I should try chlorambucil before going to
the more aggressive PBSCT.
I was not a happy camper! Not that I had made up my mind about what
I wanted to do next, but I had turned down chlorambucil earlier to pursue
the more aggressive fludarabine. I was neither emotionally prepared, nor
well enough informed to feel comfortable about this decision. Nevertheless,
I left his office with a prescription for chlorambucil tablets which I
was to take 2-3 times daily for 5 days (Pulse Therapy). I was so unprepared
that I hadn't asked the basic questions:
What things must I be concerned about with this new drug ?......(It
leads to uric acid problems, so drink lots of water all the time to flush
your system!)
Would taking chlorambucil make me ineligible for the PBSCT later? I didn't
want to close out that option in any way.
What side effects might I expect from this drug? At least I knew that I
could get that information from a pharmaceutical site on the World Wide
Web!
How long would the treatment continue? I did know that chlorambucil suppresses
cell counts and production of peripheral stem cells, leaving one susceptible
to infections and that was a genuine concern.
It wasn't the fact that I was going back into treatment that bothered
me. I knew two weeks before I saw the doctor that treatment was likely.
I felt exhausted, was having night sweats again despite hormone replacement
therapy, and could feel enlarged lymph nodes in my neck and under my arms.
Thank heavens he hadn't found any spleen involvement! It was more the fact
that I was unprepared for the latest treatment option.
Every time I think I know what is ahead the path twists and turns
without warning. I am an organized person, and this disease and its snaking
changes make planning ahead impossible. Therein lies a major rub for me!
If I can't anticipate what will occur, how do I work myself into a psychological
state that will let me keep the positive attitude I know I need to win
this fight? I'm working on that right now....and I'm taking chlorambucil!
Most people have no problems with chlorambucil. They take it and
it controls the white count, depresses the red counts, and that's that!
Well, by now we've learned that I'm not most people! Chlorambucil makes
me queasy, takes away my appetite, and makes me dizzy and woozy at times.
So far it hasn't kept me home from work, but that possibility is present.
It is doing its job, however, and my counts are improving.
| | | A Pneu Twist | |
After two months of chlorambucil pulse therapy and a trip to California,
I returned home with a thrombosed hemorrhoid. It was immediately removed.
I was given pain pills and I moved into the bathtub for a few days. Unfortunately,
on the same day as the operation, I awoke with sharp pains in my lower
right chest and had problems taking a full breath. Under the influence
of the pain pills, that important symptom was overlooked. Even when
I lost my voice and started coughing heavily, I didn't think to worry about
it.
In a week's time I realized that I couldn't catch my breath, couldn't
speak a whole sentence without coughing, and my lungs were singing to me.
I could hear rales in my lungs when I'd lie on my right side and I could
no longer sleep lying horizontally. Then a chest X ray showed that I had
a massive pneumonia in my right lung.
"Sorry, Barb, but you're going to the hospital," said my
doctor. What would be walking pneumonia for someone else was a serious
problem for me because I was immunosuppressed and neutropenic. With CLL,
pneumonia is more likely to kill me than the disease is!
The next thing I knew I was serving 5 days in a private room at St.
John's Mercy Medical Center in St. Louis on round-the-clock intravenous
antibiotics, "Erythromycin and Zenacif". The nursing staff was
wonderful and the house doctor was really terrific, so my experience was
a good one, but I was glad to be allowed to go home after the 5 days. True,
I was limited to the couch and to rest, but at least I could move at my
own rhythms, not those of the hospital's making.
A week later my chest x ray showed about 50% improvement, but my
doctor felt that my immune system was still not up to par. There was also
a lack of immunoglobulin showing up in my blood work. He suggested that
I be infused with immunoglobulin at 3.9% solution over an 8 hour period.
GrannyBarb's Story
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