Advocacy > Background > Our Letter | Endorse Our Letter | Attachments


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 
Cape Coral, Fl.
B-Cell Follicular Non-Hodgkin’s Lymphoma, Grade 1, Stage 3
Rituxan Therapy; Plan Rituxan Maintenance Treatments

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
2002 Full Course of Rituxan
2003 Radiation for five weeks to Clavicle Lymph Node
2003 (Winter) Transformation to Large B Cell, Aggressive Non-Hodgkin’s Lymphoma
February 2004 – 3 CHOP-Rituxan at three week intervals- will be followed by five weeks of radiation


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.
Wolverine, MI
8/19/03 – Surgery to resect small intestine and remove lump
8/22/03 – Diagnosis: follicular B-cell Non-Hodgkin’s Lymphoma
9/12/03 – Diagnosis Revised: Small Cleaved B-cell Non-Hodgkin’s Lymphoma – grade

11/12/03 – PET/CT Scan
12/22/03 – Finished Rituxan 4 treatments.  If all goes well I will be on Rituxan maintenance.

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)
Follicular Center Cell Non-Hodgkin’s Lymphoma, Stage 3
November 2000 – removed section of colon, tumor & lymph nodes
April 2002 - tumor of left spermatic cord (5cm) & tumor near heart
Clinical Study Protocol: 6 treatments of CHOP with Rituxan
Sept. 2002 - cardiac damage confirmed, heart attack confirmed, started ACE Inhibitor - Lisinopril
CT (12/02/02) same as 09/25/02), looks like REMISSION
CT (05/16/03) Clear.  Still in REMISSION
06/25/03 new lump in neck (4cm x 2.5cm) tumor removed (07/17/03)
(07/23/03) pathology shows close to total transformation grade 3 large cell lymphocytic Non-Hodgkin’s Lymphoma.
8/1/03 Stem Cell Transplant consultation
09/05/03  A Stem Cell Transplant is not an option. Heart and lungs are not strong enough to withstand the stress of the procedure.
09/26/03 Started Rituxan – 4 weekly treatments scheduled to be repeated every 6 months 

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
Treatment: Rituxan X 4
Currently receiving 300 mg 1/wk. – maintenance therapy.

Attachment 6


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.

I am lucky enough to live in a country where these sorts of treatments are available and free, and can only heartily recommend Bexxar as first line treatment for anyone.

By the way, I had a PET scan in July of last year which showed no cancer activity of any kind, anywhere in my body.   I have to go back and see my hematologist in April so am beginning to get a little concerned about the next round of tests!


Suzanne Elliott
Bulky Stage 2 follicular NHL diagnosed November `99.
Treatment with I131 Mabthera, October 2001.
Currently in clinical and biological remission.