This past Wednesday I had an appointment with my oncologist. She confirmed, at the time, that while my scan results were kind of 50-50, she could make a case with the Ontario funders that Sutent was still being effective and should be continued. She sent me for additional bloodwork after the appointment to check on my platelets.
After the bloodwork, I received a phone call to come into hospital Thursday morning to do more bloodwork to check platelets. The hospital then called at noon Thursday to ask me to come into hospital. I met with the oncologist on duty in the chemo bays. She told me that my platelets had gone very quickly very low (below detectable levels), and I was at high risk for bleeding or internal bleeding. Initially she proposed a platelet transfusion; however, after speaking with hematology this plan was revised. Since my immune system appeared to be attacking platelets, they had to find a way to shut down this response rather than just giving the immune system more platelets to attack.
I was admitted to hospital Thursday – Sunday, and had two courses of immunoglobin treatment overnight on Thursday and Friday. I had a strong reaction to the blood in which the immunoglobin IV treatment was delivered on Thursday, having a high fever and inability to take in enough oxygen. I did not get a wink of sleep Thursday or Friday. Friday night I did not have such a strong reaction, but was still kept awake by the constantly changing IV bottles, beeping machine, and vitals checks every 15 minutes. I slept from 2:30 to 5 a.m. and was then awake for Saturday.
It was odd to feel so much worse after treatment than I had felt coming into hospital. My platelet levels did come up to 17 and then 23 by Saturday morning. I understood that I’d be released home (for a decent meal! and sleep!), but was told by a junior fellow helping the doctor that I was to stay for one more night. I was put on steroids temporarily (for 4 days) to continue to suppress my immune system and prevent more attacks on platelets.
Luckily, I put out a call asking for visitors and my Ottawa friends responded in spades. My aunt and cousin, and several groups of friends and families were very kind to come by and keep me occupied and happy while I waited to be able to go. My son and husband were sweet enough to take me out for a walk in the hospital gardens in my PJs. It felt really good to get a little fresh air.
Investigations were conducted, but the hematologists were unable to tell us whether there was a cause for this sudden immune system glitch (whether brought on by chemo meds suddenly = unlikely; could be the body idiopathically doing this on its own?). I have about three weeks off Sutent while they continue a course of steroids (4 days), 10 days off, steroids(4 days), and continue with blood tests every three days. I am worried about whether this is something that can be treated and contained on an ongoing basis. I am also worried about how this will affect my mid- or long- term cancer treatment and survival. So far, lots of questions. but also so far, glad to make it home last night and be cozy this morning pre blood test and echocardiogram.