I'm here today because of a woman named Lynne Murphy. I've never
met Lynne in person, but we've talked on the phone and emailed a
lot. Lynne convinced me that I had a good story to tell about how I
got to Zevalin and that you are the group that should hear it.
In the spring of 1997, I began to have a wheezing problem. My
family doctor prescribed three different inhalers to try to stop the
wheezing. The inhalers didn't work and my family doctor did not seem
curious about why I was continuing to wheeze. I remember asking him
"Could this be cancer?" He said" That would be the worst case
scenario." I felt like I was silly even to ask that question. He
took some x rays but when he didn't get back to me with the results
I called his office as a growing hysteria consumed me. He did not
return the calls. I fired him.
In search of an answer to my problem, I went to an ear nose and
throat doctor who couldn't find a reason for my wheezing. A friend
of mine suggested I see a pulmonary doctor friend of hers. He told
me," I will find out why you are wheezing." He sounded convincing
and I believed him. He performed two bronchoscopes where he biopsied
tissues from inside my bronchus. The results were negative. Next he
ordered a cat scan. He showed me the actual cat scan and how around
my right bronchus lymph nodes were enlarged that shouldn't be. I so
appreciated seeing the actual scan and not just reading a written
report. He said I would need surgery to determine the cause of the
enlarged nodes. I was hoping for a histoplasmosis diagnosis because
that could be cured.
I underwent chest surgery in July 1997, where a mass was cut from
my right bronchial tube and sent to the lab. The chest surgeon was
picked by the pulmonary doctor whom I trusted because he had found
the source of my wheezing. I carried the cat-scan pictures in a big
envelope from one hospital to another to show the chest surgeon. At
home I opened the pictures and read a report which said " suspected
lung cancer". I was scared to death.
I remember thinking I'm dead. I told the chest surgeon that I was
scared I had lung cancer and he said, "This could be anything and
there is no way of knowing until we biopsy the mass." I believed him
and worried a little less about lung cancer. He also told me I'd
have a little two inch incision where he would perform the biopsy. I
woke up from the biospy with a tube coming out of my chest and a six
inch incision which made me feel like a truck had hit my right side
of my chest. I was home from the hospital three days after the
surgery and I forced myself to eat because I thought my lack of
appetite meant I was dying of cancer.
A few days later. The pulmonary doctor called me with "some good
news and some bad news." The "bad news" was that I had small cell
follicular lymphoma and the "good news" was that it was slow growing
and I might live a long time. I wondered what the good news was. I
was told there is no cure for the disease but that it can be put
into remission.
I had planned a trip in early August with my women friends. We
take a week long trip every year and I decided I had to go. So
clutching a pillow to my right chest , we boarded a plane and headed
for Park City, Utah. Before we left a friend of mine had contacted
an oncologist whom I knew because his children had attended the
preschool where I was director. He said "You have to heal up from
chest surgery before we can start chemo. Come and see me when you
get back from your trip." I remember sitting in a lawn chair in the
mountains of Utah in the wildflowers, while my friends hiked. I
remember coughing every night as my lung went through the healing
process. My roommate never complaining. I remember pretending that
lymphoma wasn't cancer and that cancer was something others had. I
remember getting off the plane and an attendant chasing me down
because I forgot my pillow. I remember going down into a silver mine
in an elevator and when we came up someone pointed at the sign that
said "If you've had chest surgery recently, don't go down into the
mine." We all laughed.
When I got back home, I had a second cat scan and went to
oncologist with my husband, terrified I'd have to start chemo. My
experience with chemo had been to watch two breast cancer friends
get sicker than dogs during chemo. My oncologist told me there was a
shadow near my gallbladder that was small so I was put on watch and
wait. I now know shadows don't mean shadows like the doctor said ",
they mean cancer. I didn't know if I was happy or not that I didn't
need treatment. I remember saying to Rich my husband, "Are we
happy?" He didn't know either. I continued living my life
apprehensively as I was healing up from chest surgery and doing no
treatment.
During this time, my friend had signed me up for an non Hodgkins
lymphoma email list of people who had what I had,. Small cell
follicular lymphoma. The list had a very knowledgeable moderator and
I soon came to feel that Karl the moderator was on my medical team.
I started reading about small cell follicular lymphoma.
During this time, I also began getting cancer treatment
recommendations from anybody who knew I had cancer or rather
lymphoma. I went to a workshop on magnet therapy. I drank Esiac tea,
I went to a chiropractor who gave me supplements out the wazoo. I
did meditation tapes visualizing the lymphoma leaving my body. I
signed up for yoga classes. Really I couldn't stand WATCH AND WAIT
because it seemed like doing nothing so I filled my time with
unproven things that cost money. The lymph nodes continued to grow.
I discontinued the alternative treatments because they didn't work.
I've kept up yoga because it taught me to relax during very
stressful times and I continue yoga today.
My first grandchild had just been born in June of 1997. and now I
was afraid that Ian wouldn't get to know me or remember me. I was
hoping to live until he was 4 so he might remember me. At this stage
of my life, I wanted to be a grandma to my grandchildren more than
anything. When I held that baby, Ian was the only time I felt in the
present and felt good. Most of the time I lived with fear of the
future.
After two years of Watch and Wait I developed big pain in my gall
bladder area where the shadow had been earlier. I remembered going
to California to an early childhood workshop and having such pain
one night that I had to take pain drugs prescribed from after my
chest surgery. I remember my fellow teachers being concerned about
me. When I got home, it was time for another cat scan which showed
some nodes growing around my gallbladder causing problems with a
gallbladder duct and a bile duct. My oncologist called me and said I
needed treatment that day. I remember saying in a little girl voice
"Oh I can't do that." He said I would ruin his Thanksgiving if I
didn't come in and he would get me through it. So I became a
chemotherapy patient and I could no longer deny I had cancer.
I found a cancer support group and attended every week. I still
do. I got 6 treatments of CVP followed by Rituxin just newly
approved. I remembered thinking I'm tolerating this chemo pretty
well even though I felt like I was being poisoned. My hair began
falling out (I always thought it would) and I asked my husband to
shave my head. I looked in the mirror and thought "Now I look like a
cancer patient. I wore a hat during the day and sometimes a wig that
I hated. Too much hair on that wig. I wore a night cap to bed. I
thought my husband and I looked just alike (he's near bald) except
he is taller. I wore a wig because I didn't want to scare my two
grandsons who were about two years old. By now I had two grandsons.
I continued working as an Early Childhood Director because
working made me feel normal. At times I was so tired, I put my head
down on my desk. My secretary would keep sick people away from me
when my blood counts were low. My staff covered for me all the time.
I just loved them for doing that.
I went into remission until 2001 when a cat scan showed the
lymphoma growing once again. I felt fine so it was hard to get this
news. I remember saying "damn it" to my oncologist and he said," I
say damn it too." I volunteered for a clinical trial of interleukin
11 and rituxin. I was in that trial for three months and felt so bad
I was sure it was working. But a cat scan showed that treatment
wasn't working at all. This also meant I was not responsive to
Rituxin alone. So I was put on fluderabine which put me in remission
once again. When a cat scan showed a recurrence of lymphoma in late
2003, I felt I was wearing out from chemotherapy, and I wanted
something different.
I had read on my email list about a drug called Zevalin which was
proving effective in recurring lymphoma, and in people resistant to
Rituxin. I asked my oncologist about Zevalin and he said that it was
an option as were several chemotherapy trials the university was
offering. He said Zevalin was a new treatment and it might cause
some bone marrow damage. I said "Isn't the chemo I've been getting
causing bone marrow damage? He said "yes".
My husband and I traveled to Michigan to consult with another doctor
who was experienced with administering Zevalin, to see if he thought
I was a candidate for Zevalin. My doctor brother arranged this
meeting. After we talked and he had reviewed my records, he told me
he thought I was a good candidate.
With this information, I went back home to Columbus and told my
doctor I wanted to try Zevalin. He said he would arrange for me to
get it. So in June 2004 I received Zevalin.
Here is how it went. I had to have a double bone marrow biopsy to
make certain my marrow didn't have too much lymphoma. It didn't. I
was scanned after injection of a dose of Rituxan the week before the
treatment to make certain the medication was going where it was
supposed to. On the day of the treatment I went to the chemotherapy
department to get a dose of Rituxan. Then within four hours I was to
walk down the hall to the nuclear-medicine department to get the
radioactive isotope. There I met some people in white coats, who
looked like mad scientist to me. I didn't know any of them. One told
told me to get on the gurney and wheeled me into an office looking
room where a beep beep sound could be heard. I was scared! I
wondered if I should get off the gurney and run!
A bunch of 14 year old looking medical students came to watch the
older doctor inject the radioactive isotope which he took out of a
lead container. I asked, "Have you done this before?" He said he had
done it about 13 times. When he was done injecting, I said to the
Nuclear - Medicine doctor "What do I do now?" He said I would not
come back to his department but would go back to the chemotherapy
department. I went home and waited for something to happen. In five
weeks, I noticed some bruising on my arms and legs so I called my
oncologist who said 'Come in for a blood count immediately!"
My platelets were below 30 and I was not allowed to leave the lab
until they had scheduled a transfusion of platelets and red blood
cells that day. I also was given something to stimulate my white
blood cells. I went into the lab every day for a few days until it
was determined that all my counts were going up. I believe my
oncologist was not properly educated about the drug he was giving or
I would have had weekly blood draws scheduled after the treatment.
Oh well.
I had a cat scan in three months which showed my nodes had shrunk
by 25%. I was very discouraged. My doctor did not tell me it takes
up to a year for the Zevalin to do its job. I don't think he knew
that.
Eventually after periodic cat scans no evidence of lymphoma was
found. I have remained in remission since 2004. I never expected
this drug to work so well. Zevalin was a much easier treatment with
fewer side effects on me than chemotherapy. Thanks to Zevalin, I am
able to be a grandma to all of my eight grandchildren. The grandson
who was born a month before my diagnosis is 13 years old and just
graduated from the 6th grade.
I go to every local Leukemia/Lymphoma Society meeting that I can
and question the doctors who do not bring up RIT as a treatment.
Here are the answers I have gotten: One doctor who has given RIT
said, "doctors don't prescribe it because they don't make money on
it." Another Research Doctor said they really don't like treatments
that can't be given anywhere. You need a Nuclear Medicine department
to give Zevalin to which I replied "I don't think a lot of patients
would mind driving if there was a chance they could have a long
lasting effective treatment."
Another objection was "The treatment requires two different
departments and that is difficult to coordinate." I replied "Look
you made it through medical school so why can't you figure out how
to coordinate two departments?" He laughed nervously. At each of
these meetings at least one person comes up to me afterwards and
asks for the name of the drug I had. I encourage them to ask their
doctor about Zevalin.
I'm enjoying life by being a docent at the local zoo and my
husband and I are spending some time traveling. We went to Alaska
last year. I owe my life to Zevalin and I want other people to have
a chance to put cancer away on the back burner and have a life!
In closing, I'd like to say that all individuals with cancer
should be provided with all treatment options, including Zevalin. If
it wasn't for the help of my friend who signed me up for the nhl
email list, my brother, who got me an appointment with the Michigan
doctor, my medical background as a nurse, and the support of my
husband and family, I could not have pursued this treatment.
Thank you so much for taking time to listen to my story.
Jan 6/8/2010
