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March 30, 2004 - Treatment Schedule Day #1: I signed in at the reception desk in the lab/infusion area at 7:25 AM. At 7:45 I was called in to the lab area for the blood draw, which was required to check my starting blood counts. Around 8:00 Dr. Morris came by the waiting area to see me. She had a consent form for me to sign and she wanted to pick up the scans so that they could review them. I showed her that my leg was swollen rather badly again, but she said that we couldn't use more steroids at this time, because a type of steroid would be used prior to receiving the Rituxan. At 8:20 a nurse from the infusion room called my name and then informed me that they were not allowed to start the Rituxan without calling the nurse/coordinator to make sure that the Zevalin scanning dose was in the building or on its way. The nurse/coordinator wasn't due in until 9:00, and no one else in nuclear medicine knew if the arrangements were made. We could not start without confirmation.
At 8:50 the nurse called me in to get set up. She inserted the IV needle and had the bags on a pole with the pump ready to go. At 9:15 she got the go-ahead, even though the Zevalin would not be delivered via courier until lunch time. First she gave me two Tylenol pills and then started an IV from two bags. One bag contained saline solution and the other contained a mixture of Benadryl and dexamethasone, which is a steroid. I learned that this combination is now used as a pretreatment for Rituxan, to help protect the patient from an allergic reaction. The nurse was unaware that I had previously been treated with Rituxan in the fall of 2000. It wasn't done at FCCC but was part of my patient record that I transferred there. The nurse told me that they would have to use the pretreatment anyway, but it was a relief knowing that the chance of a severe reaction was slim due to the previous exposure.
The Rituxan was finally started around 9:50 and it took about 3.5 hours to infuse it. The nurse contacted nuclear medicine when there was about a half hour to go. They left the IV needle in my arm and someone from the transport department had to escort me from the infusion room to nuclear medicine. That's where I go for my CT scans, so there would not have been a problem with finding the way!
I waited about 15 minutes before a nurse called me in. I sat in a chair similar to what is used to draw blood in the lab. I was about to receive indium-111 Zevalin which emits gamma radiation. The delivery method is called an "IV push". She flushed the IV needle with saline solution and then inserted the needle portion of a syringe into the plastic assembly. The nurse was of course wearing latex gloves, but I noticed that the syringe was encased in a metal tube. The needle was attached to the syringe with a green plastic locking mechanism, and it took her a few minutes to push the almost clear contents of the syringe into the IV. When the nurse was finished the syringe assembly was placed in a thick metal cylinder that was probably made out of lead. She flushed the IV and then removed it. I was told to be back the following day at 2:45 PM and at the same time the next day.
March 31, 2004 - Treatment Schedule Day #2: Today would be the first of two scans with a gamma camera. The purpose of these scans is to make sure that the Zevalin is circulated around your body properly, and the term used is biodistribution. If the scanning dose doesn't distribute properly, they will not be allowed to give you the treatment dose. Various organs and parts of your body will absorb the Zevalin more quickly than other areas, and this is what the radiologists look for. They have a schedule which outlines what should happen when as far as take up or biodistribution..
The gamma camera is somewhat similar to a CT scan machine, only you lay on a table and the machine moves down a track and scans your body from above and below. If they detect a problem, the machine
can then be set to scan from each side instead of the top and bottom. You have to remove watches, jewelry, belts and anything that might be in your pockets. However, clothing with buttons, zippers, etc., is okay. This day I laid down on the table and the technician wrapped a broad belt with Velcro closures around me to hold my arms in place. The machine is rather close to your face when it starts and you have to stay still, but it is over in about a half hour.
When the test was over the technician said that they would print the slides in the morning and a radiologist would inspect them, but that I would have to be there at the same time no matter what showed on the slides.
April 1, 2004 - Treatment Schedule Day #3: When I was called into the camera room today I asked the technician how the slides looked from yesterday. She told me that there was too much stuff that was still in circulation so the radiologist could not make any sort of determination. The technician claimed that this was normal.
The only difference in the test today was that the technician used some sort of clip-on arm supports to hold my arms in place. It felt like I was in a shallow tub. This was far more comfortable and stable than the strap device that was used the day before.
When the test was over the technician printed the slide, and it was only one slide with multiple ghostly images of my body from both top and bottom. She allowed me to look at it, but it was hard to make sense out of. It looked almost clear at first, but I could see faint outlines of my body with some dark spots near my problem area and at a couple of other areas. I asked if I would have to come back for a third scan which is sometimes required, but she said that there was enough information there. The technician said that the radiologist would read the slide and provide a report which would be transcribed and sent to my doctor the next morning. As I left I was worried, not knowing for sure if things had gone well enough.
April 2, 2004 - Treatment Schedule Day #4: I decided in the morning that if I didn't hear from anyone by 1:00 PM that I would call FCCC and find out what was going on. As I was eating lunch around 12:15 the phone rang and it was the nurse/coordinator. The report from the radiologist stated that the biodistribution was in line with expectations and that the treatment was a go! She told me that they would need to have a blood count done that day or early on Monday. The program called for them to check the patient's blood count a few days after the scanning dose and before ordering the treatment
dose. If the scanning dose would have caused a sudden drop in blood counts, then the treatment dose could not be given or ordered. I told her that I could drive to FCCC early Monday but she offered to fax a prescription slip to me so that I could get it done locally. I found a local "drawing station" and the report would be at FCCC by Monday morning.
April 3rd, 4th & 5th, 2004 - Treatment Schedule Days #5, 6 & 7: There are no scheduled activities as it's a weekend. I haven't felt any effects from the Zevalin at this point in time. However, my leg is swollen as badly as it ever was or perhaps it's a little worse than before. I was looking forward to the treatment on Tuesday.
April 6th, 2004 - Treatment Schedule Day #8: I wore sweat pants to bed the last two evenings and the leg felt a little better when I woke up. However, as soon as I was in an upright position I could feel that the weight of the fluid trapped in the thigh was pushing down on the knee. I was up before 5:00 AM and was on the road around 6:15. I checked in at the infusion/lab reception area at 7:45.
I was called into the infusion room around 8:30 and was given Tylenol pills and an IV solution of Benadryl. The Rituxan was started around 9:15 and was over by noon. I was taken over to nuclear medicine (they wouldn't let me walk for some reason) and I waited there until almost 1:30.
The nurse told me that they couldn't give me this dose of Zevalin until the doctor came back from lunch. The nurse eventually called me in and set up to give the Zevalin dose just as before, only the syringe seemed to have thicker shielding around it which appeared to have plastic casing over top of the metal. The doctor, whose name I didn't quite catch, made sure that I knew what to expect and what precautions should be taken over the next few days. The doctor told me that they had lots of success with Zevalin and wished me luck. I signed the consent document and the dose was given. This dose of Zevalin uses yttrium-90 which emits beta radiation, and is referred to as the "hot dose." The safety precautions are minimal and are to be exercised for 3 days, which is the amount of time that it will take your body to excrete excess Zevalin through your urine or stool. Toilets should be flushed twice and males should sit to urinate. Hands should be washed after each bathroom visit. Prophylactics should be used during sex. Birth control should be used for up to one year.
The infusion room nurse needed to check my vital signs before I left so I went back there. I had some questions about the weekly blood tests that are required and the nurse paged the nurse/coordinator that made all of the arrangements for the treatment. While I was waiting, the clinical trials nurse that worked with me during the Favrille vaccine trial came by. She had also been involved when Fox
Chase participated in the Zevalin clinical trials and she also said that they had lots of success with it. She told me that one of their patients has been in remission for six years! The nurse/coordinator never answered the page so I decided to leave and contact her by phone later in the week.
April 7th, 2004 - Follow-up Day 1: I could not detect any physical changes or symptoms today. Since the scanning dose was still in circulation 24 hours after the injection, I imagine the hot dose won't settle until sometime tomorrow. I called the nurse/coordinator to discuss having the blood tests done locally, and we won't ask for stat processing unless the counts crop to a critical level. The lab that I'm going to said that with normal processing and a fax number they will have the results to Fox Chase in 24 hours or less. I spent about 1.5 hours outside cleaning up the yard along the hedges and curb in the early afternoon. The leg got rather stiff as expected. I took a short walk in the early evening and the leg did not tire as easily as it did previously, which surprised me. Also, prior to bed time I noticed that the scar tissue in my groin from the two biopsies seemed to burn a bit. I dismissed this as a reaction to an approaching storm front.
April 8th, 2004 - Follow-up Day 2: The leg appeared to be the same size when I woke up this morning but felt better than it has for awhile. I walked a 1.5 mile route that includes an incline and I didn't have to stop to rest the leg. The mild burning sensation was still there, and a storm front came through around lunchtime. I felt a little nauseous prior to lunch and prior to dinner, but as soon as I ate the sensation went away.
April 9th, 2004 - Follow-up Day 3: In the morning the leg was about the same as yesterday. I worked in the yard for about 2 hours in the morning and ran some errands, so by lunchtime I was ready to prop the leg up for awhile. I did some groping this morning and the palpable mass seems smaller but perhaps it's my imagination.
April 12th, 2004 - Follow-up Day 6: There isn't much of a change as of this morning. The bulge or thickening that seems to follow the tendon into my thigh seems smaller, but it's hard to tell for sure. The weather has been rainy and damp, and the leg seemed to bother me more the last two days. It seems smaller when I wake up in the morning, but as soon as I'm up and around the fluid in the thigh starts pushing down over the knee. Yesterday was Easter Sunday and there wasn't much in the way of physical activity. Throughout the day I passed quite a bit of fluid.
April 13th, 2004 - Follow-up Day 7: When I wake up in the morning I usually stretch a bit before getting out of bed. This morning I had my left knee elevated and kicked my right leg over it and rubbed my right foot. Then I realized that I hadn't been able to do this since I was on the steroids. When I stepped on the scale my weight had dropped about 4 pounds since Saturday. The main node mass is still palpable but seems smaller. The leg was rather comfortable throughout the day, although due to continuous rain there was very little physical activity.
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