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SupportPatient Experiences & Guidance

Story: Jan's story about RIT

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

 
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