i went with L to her infusion this week because her husband was very sick with a flu bug (he’s okay now). doc is using a drug, rituxan, to knock out the anemia that landed her in the hospital over christmas. here’s the manufacturer’s short blurb on how this drug works:
rituxan works by binding to a particular protein (the cd20 antigen) on the surface of normal and malignant b-cells. from there, it recruits the body’s natural defenses to attack and kill the marked b-cells. stem cells (b-cell progenitors) in bone marrow lack the cd20 antigen, allowing healthy b-cells to regenerate after treatment and return to normal levels.
and here’s what the manufacturer says about side effects:
serious infusion reactions can happen during the infusion or within 24 hours of receiving rituxan. the doctor should give the patient medicines before their infusion of rituxan to decrease the chance of having a severe infusion reaction. if a serious reaction occurs, the infusion may be stopped and the patient should receive medical care. patients must tell their doctor or get medical help right away if they get any of these symptoms: hives or rash, itching, swelling of the lips, tongue, throat, or face, sudden cough, shortness of breath, difficulty breathing or wheezing, weakness, dizziness or feel faint, palpitations, or chest pain.
and guess what happened. before the infusion, doc explained the side effects and had L sign a consent form. then the nurse re-explained what the drug was doing and what they have seen with patients when they have used the drug. she said things like, “it’s a tiny number, maybe 10%” and “sometimes people get an itchy throat about 15 minutes into the infusion, but it goes away.” she also said they have seen patients get the itchy throat about 1.5 hours into the infusion (it’s a 4 hour infusion).
they gave L benadryl before the infusion, then the nurse stayed in the room for the first few minutes to make sure everything was fine. everything was fine. she left, saying that everything should be just fine from there on.
not so fast. about 1.5 hours into the infusion, when it looked like everything was humming along, something started to happen. L and i were talking and i could actually hear her voice change and her throat start to close up. then she suddenly got a cough. she let the nurse know immediately and like a well-rehearsed dance, the nurses stopped the drug, started fluids and administered an anti-histamine and paged the doc. L felt better but not fast enough so they administered another anti-histamine. then epinephrine. L’s throat started to feel better, but she was cold and tired and a little scared. they bundled her up in warm blankets and let her drift off to sleep. i had to leave the room.
this level of medical shit is scary stuff. L had been doing so well post-transplant and getting stronger all the time. then the anemia and the cascade of stuff that has to be done to treat that and here she is again in the infusion suite of the cancer wing.
after an hour of fluids, they started the rituxan again and everything was fine. they said everything should be fine for the next infusion and from here on out. she’s feeling better today.
i haven’t gone with L to treatment in over a year (she hasn’t had to go or P has taken her), and i’d forgotten how it feels and how it smells and how the cancer patients look in the waiting rooms or the infusion suites. but i always remember how much i hate that our daughter has to have this as part of her life.
the part that helps with the sadness and anger is how amazingly good people in the medical profession are at what they do. what brilliant minds and dogged work it has taken to develop treatments for patients. what skill, compassion, composure and hard work it takes to be a nurse or a doctor. how much their professionalism and smarts make all the scary stuff easier.
why is it again that all those sports guys, wall street guys or movie stars get paid all the big bucks?