So, I finally have something to complain about. You may remember, it took 2 pokes to set up my IV. The first poke was on my left hand, and the second and successful poke was on the base of my right hand near my wrist. As previously whined about, I'm sporting a painless, multi-colored bruise around the injection hole. However, I getting a painful burning/pinch/pulling sensation up and down my left pointer finger and thumb, surrounding the first poke. It's weird.
Besides that, things are good. This might turn out to be a really boring blog.
Sunday, December 20, 2009
December 17, 2009
The day after my injection and I feel... fine. The only side effect that I can think to complain about is a huge bruise on my hand/wrist surrounding the injection site. However, while the bruise is scary looking, it's painless, so I really can't even complain about that.
Thursday, December 17, 2009
Wednesday, December 16, 2009
Zevalin is given in 2 doses, 7 days apart; December 16th was my first dose.
My appointment was for 9am, so I left the house at 8am with a packed lunch (Cheetos, a vitamin water and a Blu Moo sandwich from Z&H on 47th-- the best sandwich shop on the Southside [if anyone deserves free publicity its them]).
I checked into hematology at 9am exactly and headed back to the treatment room sporting a blue hospital wrist band. I snagged the last chair; it was a packed house, and 3 of us were there for Zevalin treatments (the nurses were referring to us as the triplets).
For those not in the know: chemotherapy is given through an IV over a number of hours. You sit in a sort of low rent dentist chair. It’s coated in pleather and reclines, but, not unlike airplane seating, it doesn’t recline enough to be comfortable. At the hospital I’m currently getting treated at, the seats are heated—that’s huge; rituximab gives me the shivers, so I appreciate a warmed rear.
My appointment was for 9am, so I left the house at 8am with a packed lunch (Cheetos, a vitamin water and a Blu Moo sandwich from Z&H on 47th-- the best sandwich shop on the Southside [if anyone deserves free publicity its them]).
I checked into hematology at 9am exactly and headed back to the treatment room sporting a blue hospital wrist band. I snagged the last chair; it was a packed house, and 3 of us were there for Zevalin treatments (the nurses were referring to us as the triplets).
For those not in the know: chemotherapy is given through an IV over a number of hours. You sit in a sort of low rent dentist chair. It’s coated in pleather and reclines, but, not unlike airplane seating, it doesn’t recline enough to be comfortable. At the hospital I’m currently getting treated at, the seats are heated—that’s huge; rituximab gives me the shivers, so I appreciate a warmed rear.
So,the waiting began. I had gotten my blood drawn at a different hospital the night before (insurance issues-- don't ask). Of course, the results of the blood test hadn't been faxed over yet, or if they had been faxed over, they were lost, then, once my test results were finally found, my drugs had to be ordered from the pharmacy. Long story short, I was in the chair twiddling my thumbs for an hour and a half before I was even hooked up to an IV(being the holiday season, I had "How the Grinch Stole Christmas" running through my head-- you know, the part that explains exactly why the Grinch hates the Whos' celebration, except, instead of "oh, the noise, noise, NOISE," I was thinking "oh, the waiting, waiting, WAITING").
I don't have a port. After 4 years of chemo, my veins have whithered into tiny scared things, and generally hide from needles. Hence it took 2 pokes to get me going. Then, things generally went down like any other chemo day: I was given 2 pills (tylenol and benadryl), and my nurse (Nurse Denise) hung a bag of rituximab on my IV. The benadryl makes me sleepy and, as mentioned before, the rituximab gives me the shivers. In the chair, sleepiness and chills were my only side effects. I ate my Cheetos and 1/2 of the sandwich before giving up against the drowsy and falling asleep.
At about 1:00, my pump beeped empty (the IVs are run through pumps. At intervals, they beep to allow the nurses to increase the speed the chemicals are being pumped into you [if everything is going well, that is] and to notify the nurses when you're all finished.) I was unplugged and Nurse Denise wrapped up my tubes to take to Radiology (apparently, the rituximab sorta' primes the tube, so you're given the Zevalin dose through the same tube that the the rituximab was administered.)
Two nurses accompanied the triplets and a couple of family members downstairs to Radiology. For the other 2 patients, this was their 2nd dose. Apparently for their first dose, the nurses got lost leading "the twins" to Radiology. There were several jokes about this on the way down. Predictably, we got lost again.
I was the second in line to receive my Zevalin dose. I was brought into a code locked, windowless room that I'm sure is routinely used for storage. There were 2 techs in the room and Nurse Diane. I sat in a folding chair with my arm resting over a lined TV tray. Nurse Diane hung an IV bag and re-attached my tubing. Robert, one of the techs, sat in a folding chair opposite me with a red capped, metal encased syringe that he popped into my IV. He was about to push the Zevalin in when Tech #2 stopped him. Apparently, the doctor has to be in the room when the drug actually goes in.
I was told the doctor had just left the room to get a sweater, but I suspect he actually left to knit a sweater because it was FOREVER before he returned (oh the waiting, waiting, WAITING!).
When the doctor finally returned, he explained that I would be exposed to a minimal amount of gamma radiation, and that the radiation exposure was safe, "walking around Chicago for 1 year you're exposed to more radiation than a chest X-ray." He then asked if I any questions.
No one thought my question about the possibility of Incredible Hulk or Spiderman like super powers as a result of the exposure to gamma rays was funny.
The doctor left, and Robert pushed the Zevalin in. The injection took about 3 minutes. Highly anti-climatic.
I went home and slept (the benadryl really does a number on me.)
Background Information
Why am I doing this?
Oh to be young and have breast cancer… ok, that might not sound idyllic to the average person, but try being young and having non-Hodgkin follicular lymphoma. Don’t get me wrong—I’m sure breast cancer will kill you just as dead as NHL, but, God forbid, you find yourself cursed with breast cancer-- with a breast cancer diagnosis, there is this huge, well developed (um, no pun intended) community of support and information. Before facing any side effect or choosing any treatment, simply google “breast cancer” and you’re buried in information.
After 4 years or treatment and 3 different chemo cocktails, my doctor was suggesting a bone marrow transplant. Except for the couple of weeks after chemotherapy, I’ve always felt so healthy. Pursuing the bone marrow route felt like I was volunteering to make myself sicker. Then, my husband found the Zevalin website.
Zevalin and Bexxar are basically radioactive rituximab. The hype promised a chance at a lasting remission after only a week long treatment with no side effects. Here’s the thing, outside of the Zevalin website and a few published studies, there’s not a lot of info out there on Zevalin, and zero information on what the Zevalin experience is like for the patient. So, TA DA, I’m doing this to minimally relieve frustration levels for the next person who walks in these shoes.
Disclaimer
I have no medical training. In fact, the pseudo science and paranormal evidence written into the X-files TV series sounds plausible to me. YOU SHOULD NOT TAKE ANY ADVICE FROM ME on anything really, but definitely not on your cancer treatment decisions. However, if you choose to go the Zevalin route, hopefully this will give you an idea of how you’ll feel for the next couple of months.
Who am I?
My name’s Janeen. I just turned 36 (yikes). I have a perfect daughter (really—she’s smart, beautiful, funny and she’s only 2. I can’t imagine how amazing she’ll be as an adult), a handsome and infuriating husband (Eric), a fat dog (Frank) and a stupid [but attractive] cat (Jose). I live and work in Chicago.
My disease
On our first anniversary, Eric and I popped open a bottle of champagne and broke open a pregnancy test. Eric ended up drinking alone; I was pregnant. Eight weeks later, I woke up in a pool of blood. After hours in the ER, a night in the hospital, surgery and multiple ultrasounds, we found out I had lost the baby and I had cancer—non-Hodgkin follicular lymphoma “stage 3 or 4” [until recently, I refused a bone marrow biopsy because, as I understood it at the time, the results wouldn’t impact my treatment options. Hence, my exact staging was unknown].
I’ve had six rounds of CHOP-R in the Winter/Spring of 2005/2006, three rounds of RICE in spring of 2009, and a couple of rounds of a European chemo cocktail in the Fall of 2009. I also did 2 years of rituximab maintenance.
Zevalin pre-reqs
To be eligible for Zevalin treatment, you can’t have any bulky disease (defined as tumors greater than 2.5 cm across), and the smaller your tumors are, the better your chances are for a lasting remission. Further, your bone marrow has to have less than 25% cancer infiltration.
After my last round of chemo, my largest tumor was 1.7 cm across. On September 30, 2009, I finally gave in and succumbed to a double bone marrow biopsy (yeah, ouch). One sample showed 3% infiltration and the other sample was 5%.
Oh to be young and have breast cancer… ok, that might not sound idyllic to the average person, but try being young and having non-Hodgkin follicular lymphoma. Don’t get me wrong—I’m sure breast cancer will kill you just as dead as NHL, but, God forbid, you find yourself cursed with breast cancer-- with a breast cancer diagnosis, there is this huge, well developed (um, no pun intended) community of support and information. Before facing any side effect or choosing any treatment, simply google “breast cancer” and you’re buried in information.
After 4 years or treatment and 3 different chemo cocktails, my doctor was suggesting a bone marrow transplant. Except for the couple of weeks after chemotherapy, I’ve always felt so healthy. Pursuing the bone marrow route felt like I was volunteering to make myself sicker. Then, my husband found the Zevalin website.
Zevalin and Bexxar are basically radioactive rituximab. The hype promised a chance at a lasting remission after only a week long treatment with no side effects. Here’s the thing, outside of the Zevalin website and a few published studies, there’s not a lot of info out there on Zevalin, and zero information on what the Zevalin experience is like for the patient. So, TA DA, I’m doing this to minimally relieve frustration levels for the next person who walks in these shoes.
Disclaimer
I have no medical training. In fact, the pseudo science and paranormal evidence written into the X-files TV series sounds plausible to me. YOU SHOULD NOT TAKE ANY ADVICE FROM ME on anything really, but definitely not on your cancer treatment decisions. However, if you choose to go the Zevalin route, hopefully this will give you an idea of how you’ll feel for the next couple of months.
Who am I?
My name’s Janeen. I just turned 36 (yikes). I have a perfect daughter (really—she’s smart, beautiful, funny and she’s only 2. I can’t imagine how amazing she’ll be as an adult), a handsome and infuriating husband (Eric), a fat dog (Frank) and a stupid [but attractive] cat (Jose). I live and work in Chicago.
My disease
On our first anniversary, Eric and I popped open a bottle of champagne and broke open a pregnancy test. Eric ended up drinking alone; I was pregnant. Eight weeks later, I woke up in a pool of blood. After hours in the ER, a night in the hospital, surgery and multiple ultrasounds, we found out I had lost the baby and I had cancer—non-Hodgkin follicular lymphoma “stage 3 or 4” [until recently, I refused a bone marrow biopsy because, as I understood it at the time, the results wouldn’t impact my treatment options. Hence, my exact staging was unknown].
I’ve had six rounds of CHOP-R in the Winter/Spring of 2005/2006, three rounds of RICE in spring of 2009, and a couple of rounds of a European chemo cocktail in the Fall of 2009. I also did 2 years of rituximab maintenance.
Zevalin pre-reqs
To be eligible for Zevalin treatment, you can’t have any bulky disease (defined as tumors greater than 2.5 cm across), and the smaller your tumors are, the better your chances are for a lasting remission. Further, your bone marrow has to have less than 25% cancer infiltration.
After my last round of chemo, my largest tumor was 1.7 cm across. On September 30, 2009, I finally gave in and succumbed to a double bone marrow biopsy (yeah, ouch). One sample showed 3% infiltration and the other sample was 5%.
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