I’m at day +11 now. Things started to kick off on September 1st, which was day +7. My blood pressure dropped significantly and I started a low grade fever. I usually run in the 97’s temperature wise, and I bumped up into the 99’s. Those things remained for 3 days, so I was feeling pretty miserable at times.
At midnight, between day +9 and +10, my fever finally spiked into a true fever at 101. My hornet’s nest had finally been kicked after a few days of it just being gently shook. Inflammation took off and blood counts dived.
They have done a lot of tests looking for infection. I’ve been hooked up to a running IV of various things for 2 days straight, including constant IV antibiotics. I find it a bit odd. I’m having the expected response of fevers, low blood pressure and blood counts. And yet they have to assume its an infection and carpet bomb all the bacteria in my body, even though it’s expected to be a cytokine release syndrome.
I get why they do it, but it’s frustrating. I just have some work to do to try and restore it afterwards.
I don’t have a confirmed CRS rating yet, since my blood cultures haven’t finished growing to rule out infection. If it was graded, it would be rated as mild, since I did not lose any cognitive function other than a bit of spaciness. I suppose overall, so far, I’m getting through this on the easier end of the CAR-T scale (knock on wood (another funny saying)). The drug they used to calm the CRS did work quickly. So far, a second CRS hasn’t come, which I didn’t know was a thing.
My blood values seem to still be falling in the good places and are still elevated in a few wrong places. Seems like they are going to keep me here in the hospital longer than initially planned to keep monitoring. I’m at a really high infection risk with my ANC numbers. Hopefully I can get released by tomorrow.
Here is some of my more interesting data, in case you are curious.
I’m giving myself a pass and not proofreading this, so you will just have to suffer with any bad grammar or mistakes, sorry 😜.
Carrots Over Cancer 
Hi Jothi,
Sorry to hear about your fever. Hope you get past this soon. Nila did not get a fever with her Car-t cell transplant.
Your neutrophils are much better than hers were. She stayed around 0.1 to 0.2 and was released from the hospital with only 0.1 neutrophils, where yours are already 0.44. This could be that Nila was 77 when she went through this, and your younger age may help build them back faster. The highest she ever got in the last 6 months has been 1.5 almost up to low normal. Now they have dropped to 0.7 which concerned us, but her 6-month PET scan last week showed she is still 100% cancer free!! Your WBC is quite low, but that and the Hemoglobin, Platelet and Hematocrit will probably continue to rise.
She was in the hospital 10 days, and I thought she was released too early since her neutrophils were only 0.1, but she got through the next three weeks living in a hotel room in Sacramento with me preparing everything she ate, and getting her neutrophils up to 0.9 before leaving.
Your numbers look in good shape to me, just need to get over whatever your immune system is fighting.
Thank you for the update.
Iraja
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Thanks for writing and sharing the data. That is super awesome that Nila is cancer free 🙌🏼🙌🏼🙌🏼!
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