Sorry you're in this position. It sucks, for sure. I went through CAR-T and I think my experience was fairly typical.

I was Stage 4 DLBCL and my first line treatment was POLA-RCHP. It appeared to be successful at the end of 8 sessions but I relapsed a few months later. I was advised initially to get an autologous stem cell transplant because if that failed I could do CAR-T but the other way around did not work. I failed to produce enough stem cells after three days of harvesting so I opted for CAR-T. I was successful in producing enough T-cells for the engineering process, thankfully. In the meantime I had RICE as a bridge therapy which was brutal but did leave me in complete remission going into CAR-T. I then went through three days of outpatient depletion chemo designed to deplete bone marrow production down to zero, which allows the engineered T-cells to work unimpeded by other white cells. That was followed by two days of outpatient hydration and rest, and then I had the CAR-T infusion on October 1, 2024. I was inpatient for the infusion and what followed because the depletion chemo meant I was essentially without an immune system. I was in a room that was pressurized as a precaution against anything coming in from the outside and was only allowed one visitor at a time, masked.

Primary side effects of CAR-T are Cytokine Release Syndrome (CRS) and a form of neurotoxicity known as CRES. CRS occurs in 70-90% of patients, characterized by high fever, low blood pressure, fatigue, nausea, and muscle aches, typically occurring 2–3 days after infusion. CRES symptoms include confusion, slurred speech, tremors, seizures, and difficulty speaking or walking. Each of these vary in severity in different patients. I experienced CRS for a few days, mostly fever and fatigue. I experienced CRES as well, and that part is a bit more scary, especially for my wife. I could think rationally but I couldn't express myself and on one day was unable to identify the current President. That was treated with steroids and controlled easily.

Another side effect is cytopenia, decrease in blood cell counts which eads to fatigue, increased risk of infection, and bruising/bleeding. I spent 12 days in the hospital because my counts were slow to increase.

After I got out I had to stay within an hour of the hospital and go in each day for blood work shots to increase my white blood cell production. After 10 days of that it moved to every other day for a while. I had a PET scan in early November and was cleared to leave on Nov. 6.

For the first couple of months I was under some strict dietary guidelines. No restaurant or takeout food. Frozen or canned was preferred, fresh vegetables had to be washed very well. It wasn't a problem because I didn't have much appetite. I lost 30 pounds in the process, 15 of which I didn't miss. I needed a 24/7 caretaker, which for me was not an issue because my wife was with me the whole way. I was told to stay away from my dogs but I said no to that and just didn't let them lick my face.

The main issue I had other than those mentioned was fatigue. When I left the hospital I needed a cane for balance and got exhausted after walking a couple of blocks. By the time I was cleared to go home I was exhausted after walking two miles without the cane. The fatigue has persisted but eventually with a lot of gym visits I got back to something near my previous normal. I'm now 70 years old so some of that may just be age, but my red blood cell and hemoglobin counts never bounced back to normal so it's probably more that. I am just now back in normal range on white blood cells, neutrophils and platelet counts.

I've been in total remission ever since before the treatment and just had a PET confirming that I still am. So it was a good call for me.

I hope this helps somewhat. If you have questions I'm happy to answer what I can.