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Advocacy > Background > Our Letter | Endorse Our Letter | Attachments 08/25/2007 |
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Attachment
1 E.
Sullivan B-Cell Follicular Non-Hodgkin’s
Lymphoma, Grade 1, Stage 3 My
first and foremost reason for choosing to use Rituxan was to eliminate
the toxic side effects of chemotherapy. I didn't think I would be able
to cope with the side effects, and wanted to save the harsher forms of
chemotherapy for a last resort when I really needed it. My
oncologist suggested Rituxan for first line therapy.
He had been to several seminars and had been using this with
many of his patients with very good results. We
decided on Rituxan with Rituxan maintenance treatments, if I responded
well to it. I was diagnosed with B-Cell Follicular Non-Hodgkin’s
Lymphoma, Grade 1, Stage 3.
I was asymptomatic, had a clear bone marrow biopsy, but disease
was worsening in a matter of three months. After
my first four treatments of Rituxan, I had no bad side effects, I did
well. My oncologist said he would wait 76 days before sending me for a
CT Scan of abdomen, chest and pelvis.
The
CT scan showed significant reduction in the lymph nodes in the
abdomen, normal in the pelvic region, and nodes in my chest had shrunk
from 4cm to 1cm. Needless to say, my Dr., and I were
happy to hear that
news, although he had been very sure the Rituxan would do it's job. I
will start my next four (4) treatments in two (2) months, and will
continue with the Rituxan maintenance. E.
Sullivan Attachment
2 Helen D. –
age 61 Large B Cell, Aggressive
Non-Hodgkin’s Lymphoma I
had the greatest good fortune to live with “Watch &Wait” from
when I was diagnosed in 1984 until the summer of 2002 when I had a
course of Rituxan because an axillary node was causing me discomfort. Then
last summer (2003) I did 5 weeks of radiation to a node near my
clavicle, which was pressing on my throat. Both
times it was determined that the Non-Hodgkin’s Lymphoma was still
indolent (slow-growing), but this past winter (2003 – 2004) I had a
node that went from barely palpable to the size of a grapefruit in
three weeks, and core biopsies indicated it had transformed to a large
B cell, aggressive lymphoma. I
had my first round of CHOP-Rituxan on the 5th of February
2004 and am scheduled for two more (at three- week intervals) followed
by five weeks of radiation. This did not totally surprise me, I
expected it would happen someday and I have a wonderful oncologist and
cancer center close by and a fantastic support system of friends and
family. I am truly blessed. We
went to the Rituxan first because it is so benign compared to true
chemotherapy drugs and the enlarged node we wanted to dispense with
was only uncomfortable, not threatening any serious injury. The
Rituxan worked like a miracle, but what I really don't know is if I
had continued on to maintenance therapy, the Rituxan might have kept
the transition from indolent Non-Hodgkin’s Lymphoma to aggressive
Non-Hodgkin’s Lymphoma at bay. The
plan with radiation instead to the node pressing near my throat the
following year was aimed more at total eradication of that specific
lymph node. We believed that the systemic Non-Hodgkin’s Lymphoma
would always respond to Rituxan again, but the location of that lymph
node dictated the treatment. Helen
D. – age 61 1984
- Diagnosis: Indolent Non-Hodgkin’s Lymphoma, Follicular, Stage 3
Attachment
3 Jeanne
S.
Small Cleaved B-cell
Non-Hodgkin’s Lymphoma – grade 1, Stage IV When I was diagnosed the test were run – x-rays, mri,
ct scans – showed nothing.
I was in such pain and experiencing so much vomiting that
exploratory surgery was performed and there they found the
Non-Hodgkin’s Lymphoma lump in my small intestine. I had two weeks after being released from the
hospital to study my Non-Hodgkin’s Lymphoma and the treatments for
it before my appointment with an oncologist. When I got to the oncologist’s office he said,
“I think we should do wait and watch”.
I said, “But, I just saw my surgeon and he said there were
several more very small nodes inside the wall of the small intestine
and that he thought some form of treatment would be necessary because
he didn't want to keep removing sections”.
My oncologist had not seen that report.
For that matter my oncologist did not have the report from the
Mayo clinic lab. I had
taken a copy of it from my surgeon for my records and shared it with
my oncologist. The
results were very confusing. My
oncologist was very upset. The
results suggested anywhere from Non-Hodgkin’s Lymphoma b-cell
indolent to Burkett’s Lymphoma.
He said, “I have to know whether to treat this with a water
pistol or a cannon”. So
we did the bone marrow biopsy. Non-Hodgkin’s
Lymphoma was there and indolent. My oncologist didn't want to use the “big guns”
– not yet - because I have so many medical allergies and adverse
reactions and because he wanted to save the big guns for later, if
necessary. I wanted to study Rituxan more so I found the NHL Cyberfamily
web site and, found a
patient forum and went. I
talked to many very famous oncologists.
They all agreed that in my case, because nothing showed on the
CT scans, that Rituxan would be the best first line treatment because
of the surgeon’s visual assessment.
Before beginning the Rituxan I went to the
University of Michigan for a PET/CT scan.
This scan revealed cancerous nodes all through me but they were
all less than 1/2 of a centimeter.
With all of this information in hand I returned to my
oncologist and told him I was ready to begin Rituxan. I have now had four Rituxan treatments.
Soon I will have a PET scan and a week after that I'll meet
with my oncologist to discuss the findings.
I'm glad that Rituxan was there for me and that I was able to
use it. Jeanne S. 11/12/03 – PET/CT Scan
Attachment
4 Lynn M Follicular Center Cell Non-Hodgkin’s
Lymphoma, Stage 3 transformed to Large Cell Lymphocytic Non-Hodgkin’s
Lymphoma, stage 3 After
treatment with Rituxan, his tumor burden decreased dramatically within
days. It is my belief
that was the Rituxan – because even the doctor seemed surprised.
Lynn’s
heart damage was definitely due to the CHOP.
I know the Rituxan alone did NOT cause the heart damage,
because on the Rituxan alone, he has had no further heart damage and
he gets regular cardiology checkups.
I'm
thinking Lynn may have been fine on just the Rituxan alone – without
the CHOP – and he might never have even needed a Stem Cell
Transplant. His
NHL was in the process of transforming.
Last summer, in July, he had his latest tumor surgically
removed. He's on the "maintenance" Rituxan plan now and so
far no new nodes or tumors have presented.
If
he makes it a year with no relapse, I feel certain it will be due to
the treatment with Rituxan. Wendy
M. (Wife of Lynn M., Patient) Attachment
5 Sofie H. Small
Cell Lymphocytic Lymphoma (Non-Hodgkin’s Lymphoma) Rituxan
has been the only type of treatment I've had.
After being diagnosed in early 1997, I did not need treatment
until November of 1998; I remained on “watch and wait”.
Rituxan was still new at that time but it fit our needs. My husband and I have
no family or close friends where we live who could have helped take
care of me. My husband
could not just take leave from his job.
I had been watching and reading the reports of Rituxan and
decided that's what I needed. My
oncologist agreed and the results were immediate -- literally. By the next day after treatment, my spleen could not be felt
at all. I had lots of
annoying side effects but because the drug was so new, I was able to
communicate directly with the doctors at Genentech.
The side effects were not debilitating and I was able to
continue with daily life. In
January 2001, I again needed to reduce the size of my spleen so I was
scheduled for four more infusions.
I needed treatment again at the end of 2002 and have been using
Rituxan, low dose, since that time to control my symptoms and spleen
growth. Over
the past few months, my blood counts have begun to normalize and the
B2mg has been in the normal range.
I have not had to change my life style, I feel well and my
husband has not had to leave his job to take care of me.
We are extremely grateful to have the use of this drug as a
first line treatment. Sofie
H. Diagnosed:
4/97 SLL Attachment
6 Suzanne. Follicular
Lymphoma (Non-Hodgkin’s Lymphoma) I
had a "homemade" (as in made in the Nuclear Medicine
Department of one of our large Western Australian teaching hospitals)
version of Bexxar, ie Iodine 131 radioconjugated Mabthera/Rituxan
single dose combined with three of "cold" Mabthera/Rituxan
in October of 2001. I had bulky intra-abdominal stage 2
NHL of which there is no sign at present. This was my first line
treatment with anything at all as I am unwilling to poison my body
with traditional chemo that won't cure me anyway. |
