Miracles and Wonders
The Medical Story
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After the diagnosis of stage IV Ovarian cancer, the initial treatment options were pretty
clearly defined: immediate surgical de-bulking to remove as much of the abdominal
tumor as possible and clarify the extent of the spread within the abdomen, followed by
at least some traditional Chemotherapy. But even at this early stage the uncertainty of
the treatment plan was pretty clear. Our oncologist started talking to us about more
aggressive therapies and clinical trials. He suggested that after two rounds of traditional
chemo we would repeat the CT scans to see if the remaining cancer was responding. If
the response was good enough then Debbie might be a candidate for high-dose chemo
with a stem cell replacement transplant. There was also the possibility of a second look
surgery to remove additional cancer from the abdomen after it had been shrunk by the
chemo. The one thing that was clear was that we were starting down a long and
uncertain path.
When the day of the surgery finally arrived, we processed through admitting and pre-op
fairly smoothly. The only hitch was that we didn't yet have living wills or advanced
directives so we had to complete a Medical Power of Attorney to give me the right to
make decisions on her behalf. This was not exactly the kind of thing that you want to
be thinking about right before going under the knife, so let's just say it added to the
stress of an already stressful day.
The surgery took several hours, but the waiting was relatively easy since everything
happened pretty much on the schedule that had been described to us in advance. When
the surgeon came out to talk to me as the procedure was wrapping up, he told me that
he had removed two large masses (one attached to each of her ovaries). The larger of
the two was the size of a volleyball while the smaller was closer to a tennis ball. Each
involved several types of tissue, but the good news was that each was also free-floating
meaning that they were not attached to the abdominal wall or any of the other nearby
organs, like her liver, bladder or bowels. So they were able to remove these tumors
along with her ovaries, uterus, cervix and omentum without any collateral damage. The
only exception was that one of the tumors was wrapped around, but not penetrating her
appendix. So she got an appendectomy at no extra charge. He also had removed a few
of the enlarged lymph nodes for analysis, but it wasn't possible to surgically remove all
of the cancer in the lymphatic system, so it would be left to the chemotherapy to deal
with that aspect of the disease. This is a long way of saying that the surgery was as
successful as we could have hoped for. They were able to remove all of the primary
cancer, and they found no evidence that it had spread to any place that had not already
been identified.
Following the surgery, the collected tissue was sent to a pathologist for analysis in
order to better determine the details of Deb's cancer and to test the cancer to see which
drugs it might respond to in order to select the best course of treatment. These tests
indicated that the cancer was somewhat responsive to the standard drug combination,
and highly responsive to at least one of the alternatives. This was good news and
confirmed that the plan to begin with a standard course of chemotherapy was the most
reasonable approach.
Once the surgery was completed and Deb had had a few days to start her recovery, it
was time to begin the Chemotherapy. With Ovarian cancer the standard treatment is a
combination of paclitaxel and a cisplatin drug administered on a three week cycle (one
day of therapy followed by 20 days to recover). Most people suffer some side effects
including hair loss, nausea, fatigue, joint pain, neuropathy (numbness and tingling in the
extremities), and the list goes on and on, but the intensity of the side effects is
extremely variable from one patient to the next. Deb was lucky in some respects, she
had very little nausea and never experienced any neuropathy which is sometimes a
permanent side effect, but she had a rough time with the joint pain and the fatigue.
Typically, those side effects would begin about a day after her treatment and would last
for the rest of the first week of the treatment cycle. The fatigue would leave her
completely exhausted but wide awake, so that all she could do was lay in bed and think
about how much her joints ached. Usually by the third or fourth day of constant fatigue
she would be just about at the end of her ability to cope with it, but fortunately that is
when the side effects would begin to subside. (more about chemotherapy, coping with
side effects, and keeping a chemo diary).
Since chemotherapy makes you feel worse instead of better, regular blood tests are
required to gauge its effectiveness. For Ovarian cancer the relevant test is the CA125
tumor marker. While not completely specific to ovarian cancer it is a strong indicator
and is the primary measure of response to treatment. This marker can be present in
small amounts in healthy women so the normal range is between 0 and 35 (the unit of
measure is kU/ml but that isn't particularly helpful for a layperson). On this scale Deb's
first CA125 level was over 4800 indicating a significant amount of cancer. This
dropped to about 2400 after the surgery and immediately prior to the first chemotherapy
treatment which wasn't surprising considering the amount of cancer that was removed
surgically. That also set the baseline against which the effectiveness of the
chemotherapy would be measured. According to the medical literature, the ideal rate of
decrease during therapy is a factor of two every 7 to 10 days. That works out to a
factor of between four and eight from one treatment to the next.
Since blood tests are required prior to each treatment in order to check for anemia, low
white cell counts, and other depressed or elevated levels, we also had a CA125 test at or
just prior to each treatment. After the first cycle of chemo (and just prior to the
second), Deb's CA125 had dropped to 660; and following the second round it was
down to 120. Those are decreases of about a factor of four and five respectively
indicating that Deb's cancer was responding to treatment at roughly the ideal rate. This
was actually two separate pieces of good news. First, her remaining cancer (in the
lymph nodes) was responding to the standard drug combination and second, that
response was essentially as strong as we could have hoped. During this period Deb also
noticed that the lump in her neck was shrinking rapidly, and her doctors confirmed that
that was another excellent sign that the chemotherapy was working.
Also following the second round of Chemo, Deb went for a PET scan which involves
injection of a sugar based dye that is primarily absorbed by the cancer cells followed by
a full torso scan which would show any concentrations of dye. This test is very
effective at identifying the spread of cancer away from the primary site. Deb's PET
scan came back showing cancer only in the lymph nodes in her abdomen and neck and
no other locations. In other words, there was no additional spreading within her
abdomen, or lymph system, and no sign of any spread to her lungs, bones, etc.
This was more good news. So good in fact that continuing the standard treatment for
the full course of six rounds was preferred to the more aggressive (and therefore more
dangerous) options. Even though the news was good and we avoided the first possible
aggressive option, we couldn't get too optimistic. We had been warned from the start
that although most ovarian cancers (60 to 70 percent) respond to chemotherapy, it is
extremely rare to have a complete response. So while these initial results were very
promising in terms of slowing or even temporarily reversing the progress of the disease,
we were still a long way from hoping for a cure.
By now it was just past Thanksgiving which we had celebrated at home according to
our long standing tradition except that I had had to prepare the meal with only a little
guidance from Debbie (it turned out surprisingly well, but that's another story). So we
were moving into the Christmas season and the realization that there would be no trips
to be with family over the holidays because Debbie just wouldn't be well enough to
travel and probably shouldn't be exposed to so many people while the chemotherapy
was suppressing her immune system. So our spirits were pretty low in spite of the
promising news. Then shortly before Christmas my mother passed away and Debbie
had to miss the funeral and I was only able to fly in for a couple of hours since I had to
be back to take Deb to chemo early the following morning.
Once the new year started, the news continued to be promising. After the third
treatment, Debbie's CA125 was down to 41 (just outside the normal range), then after
the fourth treatment it had dropped to 19 (well within the normal range and at a level
suggesting that her cancer must be nearly gone. These decreases were only factors of
about three and two respectively, which is significantly less than the ideal rate but the
numbers were getting small enough that the rate had to begin slowing. Also by that
point, the lump in her neck had shrunk to the point that neither she nor her doctors
were certain that they could still feel anything.
So the treatments continued and after the fifth and sixth chemos, Deb's CA125 dropped
to 13 and 12 respectively. These values were consistent with those of a healthy adult,
and when combined with the changes in her neck we were very hopeful as we
scheduled another set of scans (CT scan and PET scan) to determine to what extent
there was cancer remaining to be treated by a follow up surgery or additional therapies.
Both of our oncologists, while very positive about the progress so far, were still
thinking in terms of "the next step". So we were looking at possible participation in a
clinical trial of a monoclonal antibody drug, or continuing chemotherapy for as much as
an additional year either as additional primary therapy or as maintenance therapy.
As we waited for the scan results, we began to prepare for a seventh round of
chemotherapy using only a single drug instead of the usual combination so that Deb
could determine which of her side effects might be reduced or eliminated in this
scenario. This would be useful input if she needed to consider maintenance
chemotherapy for an extended period of time. When we went in for the necessary lab
work prior to this seventh treatment, our oncologist nurse called up to the lab and asked
us to stop in the office on the way out. Since this was the day after the PET scan it had
to be about the results, and its never good when they want to tell you in person.
Our story continues in the section labeled "The Miracles" which covers this same time
period but from an emotional and spiritual perspective.
clearly defined: immediate surgical de-bulking to remove as much of the abdominal
tumor as possible and clarify the extent of the spread within the abdomen, followed by
at least some traditional Chemotherapy. But even at this early stage the uncertainty of
the treatment plan was pretty clear. Our oncologist started talking to us about more
aggressive therapies and clinical trials. He suggested that after two rounds of traditional
chemo we would repeat the CT scans to see if the remaining cancer was responding. If
the response was good enough then Debbie might be a candidate for high-dose chemo
with a stem cell replacement transplant. There was also the possibility of a second look
surgery to remove additional cancer from the abdomen after it had been shrunk by the
chemo. The one thing that was clear was that we were starting down a long and
uncertain path.
When the day of the surgery finally arrived, we processed through admitting and pre-op
fairly smoothly. The only hitch was that we didn't yet have living wills or advanced
directives so we had to complete a Medical Power of Attorney to give me the right to
make decisions on her behalf. This was not exactly the kind of thing that you want to
be thinking about right before going under the knife, so let's just say it added to the
stress of an already stressful day.
The surgery took several hours, but the waiting was relatively easy since everything
happened pretty much on the schedule that had been described to us in advance. When
the surgeon came out to talk to me as the procedure was wrapping up, he told me that
he had removed two large masses (one attached to each of her ovaries). The larger of
the two was the size of a volleyball while the smaller was closer to a tennis ball. Each
involved several types of tissue, but the good news was that each was also free-floating
meaning that they were not attached to the abdominal wall or any of the other nearby
organs, like her liver, bladder or bowels. So they were able to remove these tumors
along with her ovaries, uterus, cervix and omentum without any collateral damage. The
only exception was that one of the tumors was wrapped around, but not penetrating her
appendix. So she got an appendectomy at no extra charge. He also had removed a few
of the enlarged lymph nodes for analysis, but it wasn't possible to surgically remove all
of the cancer in the lymphatic system, so it would be left to the chemotherapy to deal
with that aspect of the disease. This is a long way of saying that the surgery was as
successful as we could have hoped for. They were able to remove all of the primary
cancer, and they found no evidence that it had spread to any place that had not already
been identified.
Following the surgery, the collected tissue was sent to a pathologist for analysis in
order to better determine the details of Deb's cancer and to test the cancer to see which
drugs it might respond to in order to select the best course of treatment. These tests
indicated that the cancer was somewhat responsive to the standard drug combination,
and highly responsive to at least one of the alternatives. This was good news and
confirmed that the plan to begin with a standard course of chemotherapy was the most
reasonable approach.
Once the surgery was completed and Deb had had a few days to start her recovery, it
was time to begin the Chemotherapy. With Ovarian cancer the standard treatment is a
combination of paclitaxel and a cisplatin drug administered on a three week cycle (one
day of therapy followed by 20 days to recover). Most people suffer some side effects
including hair loss, nausea, fatigue, joint pain, neuropathy (numbness and tingling in the
extremities), and the list goes on and on, but the intensity of the side effects is
extremely variable from one patient to the next. Deb was lucky in some respects, she
had very little nausea and never experienced any neuropathy which is sometimes a
permanent side effect, but she had a rough time with the joint pain and the fatigue.
Typically, those side effects would begin about a day after her treatment and would last
for the rest of the first week of the treatment cycle. The fatigue would leave her
completely exhausted but wide awake, so that all she could do was lay in bed and think
about how much her joints ached. Usually by the third or fourth day of constant fatigue
she would be just about at the end of her ability to cope with it, but fortunately that is
when the side effects would begin to subside. (more about chemotherapy, coping with
side effects, and keeping a chemo diary).
Since chemotherapy makes you feel worse instead of better, regular blood tests are
required to gauge its effectiveness. For Ovarian cancer the relevant test is the CA125
tumor marker. While not completely specific to ovarian cancer it is a strong indicator
and is the primary measure of response to treatment. This marker can be present in
small amounts in healthy women so the normal range is between 0 and 35 (the unit of
measure is kU/ml but that isn't particularly helpful for a layperson). On this scale Deb's
first CA125 level was over 4800 indicating a significant amount of cancer. This
dropped to about 2400 after the surgery and immediately prior to the first chemotherapy
treatment which wasn't surprising considering the amount of cancer that was removed
surgically. That also set the baseline against which the effectiveness of the
chemotherapy would be measured. According to the medical literature, the ideal rate of
decrease during therapy is a factor of two every 7 to 10 days. That works out to a
factor of between four and eight from one treatment to the next.
Since blood tests are required prior to each treatment in order to check for anemia, low
white cell counts, and other depressed or elevated levels, we also had a CA125 test at or
just prior to each treatment. After the first cycle of chemo (and just prior to the
second), Deb's CA125 had dropped to 660; and following the second round it was
down to 120. Those are decreases of about a factor of four and five respectively
indicating that Deb's cancer was responding to treatment at roughly the ideal rate. This
was actually two separate pieces of good news. First, her remaining cancer (in the
lymph nodes) was responding to the standard drug combination and second, that
response was essentially as strong as we could have hoped. During this period Deb also
noticed that the lump in her neck was shrinking rapidly, and her doctors confirmed that
that was another excellent sign that the chemotherapy was working.
Also following the second round of Chemo, Deb went for a PET scan which involves
injection of a sugar based dye that is primarily absorbed by the cancer cells followed by
a full torso scan which would show any concentrations of dye. This test is very
effective at identifying the spread of cancer away from the primary site. Deb's PET
scan came back showing cancer only in the lymph nodes in her abdomen and neck and
no other locations. In other words, there was no additional spreading within her
abdomen, or lymph system, and no sign of any spread to her lungs, bones, etc.
This was more good news. So good in fact that continuing the standard treatment for
the full course of six rounds was preferred to the more aggressive (and therefore more
dangerous) options. Even though the news was good and we avoided the first possible
aggressive option, we couldn't get too optimistic. We had been warned from the start
that although most ovarian cancers (60 to 70 percent) respond to chemotherapy, it is
extremely rare to have a complete response. So while these initial results were very
promising in terms of slowing or even temporarily reversing the progress of the disease,
we were still a long way from hoping for a cure.
By now it was just past Thanksgiving which we had celebrated at home according to
our long standing tradition except that I had had to prepare the meal with only a little
guidance from Debbie (it turned out surprisingly well, but that's another story). So we
were moving into the Christmas season and the realization that there would be no trips
to be with family over the holidays because Debbie just wouldn't be well enough to
travel and probably shouldn't be exposed to so many people while the chemotherapy
was suppressing her immune system. So our spirits were pretty low in spite of the
promising news. Then shortly before Christmas my mother passed away and Debbie
had to miss the funeral and I was only able to fly in for a couple of hours since I had to
be back to take Deb to chemo early the following morning.
Once the new year started, the news continued to be promising. After the third
treatment, Debbie's CA125 was down to 41 (just outside the normal range), then after
the fourth treatment it had dropped to 19 (well within the normal range and at a level
suggesting that her cancer must be nearly gone. These decreases were only factors of
about three and two respectively, which is significantly less than the ideal rate but the
numbers were getting small enough that the rate had to begin slowing. Also by that
point, the lump in her neck had shrunk to the point that neither she nor her doctors
were certain that they could still feel anything.
So the treatments continued and after the fifth and sixth chemos, Deb's CA125 dropped
to 13 and 12 respectively. These values were consistent with those of a healthy adult,
and when combined with the changes in her neck we were very hopeful as we
scheduled another set of scans (CT scan and PET scan) to determine to what extent
there was cancer remaining to be treated by a follow up surgery or additional therapies.
Both of our oncologists, while very positive about the progress so far, were still
thinking in terms of "the next step". So we were looking at possible participation in a
clinical trial of a monoclonal antibody drug, or continuing chemotherapy for as much as
an additional year either as additional primary therapy or as maintenance therapy.
As we waited for the scan results, we began to prepare for a seventh round of
chemotherapy using only a single drug instead of the usual combination so that Deb
could determine which of her side effects might be reduced or eliminated in this
scenario. This would be useful input if she needed to consider maintenance
chemotherapy for an extended period of time. When we went in for the necessary lab
work prior to this seventh treatment, our oncologist nurse called up to the lab and asked
us to stop in the office on the way out. Since this was the day after the PET scan it had
to be about the results, and its never good when they want to tell you in person.
Our story continues in the section labeled "The Miracles" which covers this same time
period but from an emotional and spiritual perspective.