So I posted before that I was worried about not having side effects. Now I have them but they don’t know what is.
- October 16, 2019 at 11:12 am
I had those minor cold symptoms one night when I posted. No cold symptoms the next day thought ii was probably getting flu. I started developing a progressively harsh headache and having an occasional headache. On Saturday, my husband calls on call doc and they send me to hospital. They check me for all regular side effects a large variety, I have brain MRI (tumor grown) and Ct with contrast showing others have not.
The headache is most gone but I am developing very cyclical high fevers (104+) at least twice a day. They don’t have an answer other we think it is an immune response. My neurosurgeon want brain surgery Friday but my head must be clear.
Anyone have experience with this? Very frustrating.
sks2019ParticipantJudiAU, My mom started fever 2 weeks after her first combo (ipi/nivo) , her fever went upto 100- 102 with body aches , headaches and jaw aches. Blood work was normal but urine analysis showed a UTI.
- October 18, 2019 at 5:05 pm
Antibiotics helped to get rid of it and the fever. She is on prednisone 10 mg/day and its been 2 weeks since her second combo dose. She still has fatigue and cant really chew.
After I posted this I spent 4 miserable days at one and the next five days at hospital with terrible fever spikes, mostly 104 but I even got a 107. And I also had an awful and escalating headache. It was unrelated to any known side effects and they couldn’t find a source of infection. I finally figured the very specific schedule of the fever and combination of better scheduled drugs and starting steroids I am now home. I had a CT which very little progression but no real progress. My Brian Tumor showed so I’ll be having a crainiotomy Thursday. Of I’ll things I dread this the most.
- October 19, 2019 at 5:17 am
Everything was eventually just called immunotherapy adverse event so I guess I join the world of side effects. .
jennunicornParticipantI was in a similar situation where I hadn’t had any major side effects and then BAM fevers. Mine were also cyclical, they would start around sundown, 5-6pm and last all night until the morning, about 6am. I would be up all night fighting off a fever, then be exhausted during the day so I slept all day while I didn’t have a fever and it would start up again in the evening. This lasted about a month. It was miserable. That was the only big side effect I ever had on immunotherapy, so I am grateful it wasn’t worse. Went to the hospital when it first started, was tested for everything like infection and all else. It was just my immune system ramping up. Skipped an infusion during that time until my body calmed down. Sending lots of good vibes for your craniotomy and for you to feel better soon.
- October 20, 2019 at 4:31 pm
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