Archive for July, 1998

Cancer-Free But Not Anxiety-Free: Transfusions, Procrit, Cortef, Neumega, a Hospital Stay

More Transfusions, and Leaving for Israel

I’m at a quiet moment after a stormy week – and a somewhat stormy past six

I continue to feel well most of the time, and to be enjoying friends, family,
work, and volunteer work for the West End Synagogue.  Ken and I spent a
wonderful Fourth of July weekend at the Kripalu Center for Yoga and Health,
and I’ve been pampering myself by following through on some new habits to
manage stress better – like breathing deeply, chewing food slowly, getting
exercise, etc.  We’ve been enjoying having Margie home for the summer, and
having Sarah back from three weeks in overnight camp.  We’re all leaving for
a two-week trip to Israel on August 1.  While Sarah was in camp, we enjoyed
Tanglewood (twice), the New York Philharmonic, American Ballet Theatre,
Pilobolus Dance Company, and a George Bernard Shaw play at the Roundabout.

(I can’t resist:  In addition to my work as membership chair, I’ve made it a
passionate hobby to upgrade the synagogue’s computer systems.  Please let me
know if you or your workplace has computer equipment in very good condition
that you’d like to donate – I’m still looking for two Pentium 90 or better
computers, some 486 or better laptops, working printers, modems, monitors).

But my health situation continues to be a roller coaster.  The short version
of the story is that though there is still no sign of cancer, my blood
counts have not recovered.  I continue to need transfusions, we’re trying
various drugs to see if they will help avoid the transfusions, but one of
these (Neumega, for platelets) landed me in the hospital for an overnight
stay this week.  I’m out of the hospital and the effects of the Neumega seem
fixed, but we still have not gotten to the point where we can relax and
forget about my health.

Feel free to stop at this point.  As you’d expect, I continue to play a
very active role in helping to coordinate my health team and in learning
to monitor the situation.  I’m writing the story in more detail so that those
who want to know all the details can find them here – especially in hopes
that some of what I’ve learned will be of use to others going through similar

The Longer Version:

Initial reports from a second bone marrow biopsy (on 6/26) still say that my
bone marrow is working and is not malignant.  But I’m making history as the
first patient in the breast cancer part of the stem cell transplant program
who has gone so long with my counts staying so low.  While I made it through
two months from early April to the end of May without needing any
transfusions, lately I’ve been needing transfusions of packed red blood
cells and platelets more often again.

The transfusions aren’t unpleasant – the nurses are wonderful, and I sit in a
comfortable chair and relax.  I still have the double Port-a-cath, so my
veins don’t get messed up from repeated needles.  I came to a point in the
past weeks where we realized that it would be easier, emotionally, to start
thinking of these low blood counts as a long-term situation that we’ll live
with as well as we can, rather than holding our breaths expecting it to get
better any day now.  Of course, we could still be pleasantly surprised – but
we’re not expecting any speedy recovery.

The hematocrit, hemoglobin, and platelets rise nicely after each transfusion,
and the doctors are frankly puzzled about why they keep dropping again.
On June 30 I sat down with Dr. Hesdorffer (head of the bone marrow/stem cell
transplant program) and insisted on finding out what he was thinking, and
learned that I’m the first patient in this breast cancer stem cell program
whose counts have stayed so low for so long.  That was scary.  There is a
remote fear that this could be leukemia, though no other patient who has had
my high dose chemotherapy protocol has ever ended up with leukemia (there
have been a few cases of leukemia with lymphoma patients who had different
kinds of chemo).  My internist insists that people who are developing
leukemia look much sicker than I do.  I had a second bone marrow biopsy on
June 25, which so far has shown nothing bad.

When I pushed him to answer this question, Dr. Hesdorffer also said that if
I developed a recurrence of cancer, I would not be able to have chemotherapy
with these low blood counts.  (I found that distressing, since I know and
admire so many women who are living good lives for years while on chemo with
metastasized breast cancer).  I remind myself that there are also new gene
therapy and hormone therapies that are developing, and that there is a good
chance that I’ll stay free of cancer altogether).  Perhaps of greater
concern, even if I continue to be cancer-free, the transfusions themselves
carry risks – of building up antibodies, or too many iron reserves.

We’ve planned various strategies to attempt to reduce the need for
transfusions, but the one for platelets, Neumega, has already failed (see
below), and others are still too soon to tell.

First, the good news is that though they are low, my white blood counts have
stayed stable or even have been rising a tiny bit.  They varied between 1.5
and 2.5 (normal is 4 or higher) for a long time, and in the past week have
sometimes hit higher than 2.5.  My doctors all agree that these low white
counts are adequate to deal with everyday exposure to infection – I’m free to
go in subways, movie theatres, and hot tubs, and it’s OK to eat sushi. (We’ve
decided not to go to Egypt to see the pyramids, because we’re concerned about
sanitation there).  I do discourage people with very active colds from
getting too close.  I have only had one or two colds all year.

For my red counts (hematocrit and hemoglobin), I’ve started giving myself
injections three times a week of Procrit (also known as Epogen), which don’t
seem to have any side effects and in many cases help maintain red blood
counts and avoid transfusions.  It’s not clear to me how soon this is
expected to take effect – I started July 3.

For the platelets, there is a brand-new drug called Neumega (Interleukin-11),
which I started injecting daily on July 8.  It’s side effects made me
gain nearly 10 pounds of fluid in two weeks, and the fluid retention
strained my heart, causing rapid pulse, and irregular heartbeat.  By
Tuesday, July 21 my heart rate stuck at 150, and I had what was called
“atrial flutter with a 2 to 1 block.”  This landed me in the hospital by last
Wednesday, July 22 – and we are now relieved and grateful that I am back off
the Neumega and back with a normal heartbeat.  The hospital stay included
about nine hours in the Lenox Hill Hospital emergency room, which is more
dramatic than any soap opera.  Then I had a much more spacious and
comfortable environment in the cardiac care unit.  They managed to restore my
heart rate with intravenous drugs – and then to get the rhythm back to
normal, they used a little electric shock to the heart, called
“cardioversion.”  (Needless to say, Ken was at my side through all this and
could not have been more wonderful – and both kids visited me in the hospital
and were great – the staff in both hospital settings were also terrific).

My doctors worked quickly to deal with the atrial flutter, because if it is
treated immediately it almost always goes away – but if you leave it, it
might need much longer-term therapy.

The Neumega (which became available in November, 1997) helps chemotherapy
patients avoid platelet transfusions – one research study showed that it was
effective in 25% of patients.  However, it causes fluid retention in about
60% of patients, and heart arrhythmias and palpitations in about 10% of
patients.  When I started on it, I called the company who made it and spent
an hour discussing how I should monitor or manage the side effects.  I also
had talks both with my internist and Dr. Hesdorffer.  Nevertheless, I had two
episodes of rapid and irregular heartbeats on Thursday and Monday nights, and
then had an appointment with my internist, Maurice Beer, to meet with him to
start on diuretics.   When I arrived in his office on Tuesday, after a walk
outdoors in the heat, my heart went into atrial flutter.  I got their
attention and got them to do an immediate EKG, and we started trying to treat
it – by the next day when it hadn’t recovered on its own, I went into the

While I was in the hospital, my hematocrit and hemoglobin dropped very
rapidly, and I needed another transfusion of two units of packed red blood
cells in the middle of the night.  I have no idea what caused that – it is
conceivable that it had something to do with the drugs they were giving me.
My platelets also dropped suddenly, and we arranged for me to be discharged
from Lenox Hill at 1:00 so I could get back to Columbia Presbyterian Hospital
for a platelet transfusion at 2:00 – I finally got home around 4:00.

After a month of lobbying with both of them, I got my internist, Maurice
Beer, and my stem cell transplant doctor, Charles Hesdorffer, to talk to each
other.  Dr. Beer had been suggesting some nutritional approaches, and Dr.
Hesdorffer started out leery of these.  By the time they talked, Dr.
Hesdorffer had concluded that nutritional approaches would do no harm  – so
Dr. Beer suggested a variety of vitamins (B12, C, and folic acid) and herbs
and diet that might provide better nourishment to the bone marrow and might
deal with a possible mild yeast infection in my system.  In addition, they
discussed what might be causing the low counts, and hypothesized that it
might be some kind of auto-immune (allergic) reaction to my own blood – so
they put me on cortisone (Cortef) four times a day to see if that helps the
blood counts.  As usual, that has me “wired up” and I’m playing with the best
things to use to get enough sleep.

So now we’re off to Israel with material for injections three times a week,
various pills many times a day, and a letter of introduction to a
hematologist at Hadassah Hospital who used to work with Dr. Hesdorffer at
Columbia, in case I need any transfusions while I’m there.

As Margie said, this week’s hospital stay reminded us of the Jewish folk tale
of the man who kept complaining to the rabbi that his home was too crowded.
Week after week, the rabbi had him keep moving more animals into the man’s
house – and when the rabbi finally told the man to get rid of the animals,
the man thought his home a mansion.  Likewise, we’re pleased and relieved
that I am home from the hospital, feeling reasonably well (though still a
little tired and wired from the week’s escapades), and “just” needing
occasional transfusions.




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