My last post was about how good I was feeling after Car-T cell infusion and how I had had no symptoms which are loften reported in the first 2 weeks post infusion. Then I began having stabbing sharp pains all over my body plus chills and a headache. That went on for 3 or so days at which point I began to feel better. Now I believe I must be in the Neurotoxicity phase of just feeling slightly off and a bit slow and lethargic. Of course, some of that could be a result of lack of sleep and exercise. I am reluctant to report any of this to the staff since I don’t want to delay going home in a couple of days. My husband has been with me for all but 2 nights so I think if I were really getting goofy, he would notice and report to the staff. I have not had a fever at all; the main concern my nurses have is how low my blood pressure has been dropping at night. If all goes well, I think I will be able to go home in a couple of days. It will all be worth it if it works. I’ll report more in a few days.
Car-T Adventure, Take II: My last post was about... - CLL Support
Car-T Adventure, Take II
So glad to hear that you are inching towards a successful recovery and have plans to go home soon.
Hang in there.
Jeff
Thanks, Jeff! “Inching toward “ certainly describes being in the hospital for 2 weeks!
I'm sorry to say that I really feel that you must report any signs or symptoms like this to the healthcare staff so that they can decide if ou need treatment for it. Please do not ignore these things as they need careful monitoring and may not delay your discharge but better safe than sorry.
It's known as ICANS or Immune Effector Cell-Associated Neurotoxicity Syndrome and treatment typically involves supportive care, corticosteroids like dexamethasone or methylprednisolone, and in severe cases, anti-cytokine agents like tocilizumab or anakinra, along with seizure management with levetiracetam or benzodiazepines.
Jackie
Thanks, Jackie. I actually have reported some of them when asked. It’s very difficult to know what exactly to report as it varies so much hour to hour. But I think I know myself and the symptoms to watch for well enough to differentiate between things that may happen when I’m not on treatment and things that are alarming. And, as I said, I’m lucky enough to have my husband watching me like a hawk. The staff also does an orientation assessment twice a day as well as numerous other tests which I have successfully completed each time. I would never risk doing anything to jeopardize the efficacy of this treatment.
Morning I am in Addenbrookes hospital atm day 8 after my T cell infusion. Currently, coming up to 72 hours of fevers.
I know you want to go home, I can understand that. As I need to be with my wife who was diagnosed with breast cancer and she is being treated at Ipswich hospital.
However, I am telling my medical staff all my symptoms and will only go home when they say it's safe. It's hard on our sons, but they agree.
Please please inform your medical team, a few extra days in hospital is worth not having complications at home.
Sorry if this offends it's not meant too, just a concerned fellow CAR-T er.
I hope you get better soon.
I hope to write a post once I feel well enough, but I felt I needed to reply
Stay safe.
Totally can relate to not wanting to delay going home. No way to get any sleep in a hospital room. I didn't have the worst neurotoxicity issues until I went "home" (I rented an apartment close to the hospital). I had one afternoon of not being able to think clearly day 18 I think. I had considerable hand shakes and they were pretty bad the day they let me go but resolved a week later. I also had BP run low and also oxygen at night with both of these symptoms past day 10. For me it was worth it but keep in mind it will take time to get back to your regular self. I felt pretty noraml 3 weeks after I got out of the hospital but 2.5 months post infusion and my immune system is still trying to fight back and my hemoglobin is still about 9.
Yes, I can see with the variable symptoms coming at different times that it may indeed take some time before you are back to normal. Last night I had intervals of my legs shaking uncontrollably which alarmed me but hardly caused a ripple in the nursing staff. I was given a muscle relaxant which helped and today no follow up so I guess this is one of the symptoms of something but not that concerning since they still say I’m on track to go home tomorrow. I am hoping there is a tutorial of some sort before I leave the which will tell me when to be concerned about symptoms and when to just deal with them. It sounds like in your situation, it was not unusual to develop symptoms for some time after leaving the hospital. I will be aware. Best of luck to you.
You probably have something buried in the packet they gave you when you went through "training" but my guess is you will "know" when something is wrong. When I had my afternoon mental lapse I could tell I was not right but I also decided to wait a few hours before I reported and I got better and I didn't need to rush back. You will also be back 3x for check ups the first week if you have the same schedule I did so they will be on top of you. PS you are lucky you didn't have symptoms right away. I had high fevers from day one and the neuro stuff started after the fevers resolved. But it never got really bad thankfully. Good luck getting out soon!!!
Yeah, I think you have to use your own judgment since you know yourself better than anyone else. I hope it will all become more clear during discharge instructions. I also have to care for the radiation wound which needs daily wound care and probably will for the foreseeable future.
I understand wanting to go home but you really need to be honest with the nurses and doctors about everything! They will likely tell you those are common side effects but better to be safe than sorry. I’m praying health and safety over you.
Second Rituximab infusion.
Obinutuzumab and Venetoclax update
CAR-T update and more
Flair trial. Report from the field. 
On Venetoclax for 3 weeks, no issues
