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Thread: Car t

  1. #81
    Moderator Top User
    Join Date
    Mar 2010
    Hi good to see another positive post, I nearly shared this earlier but have the doctors considered if James may be suffering with delirium ? I have seen this at first hand with a relative who was in hospital for 11 weeks and who had serious infections, he experienced this whilst in hospital and we would have the oddest of conversations and when he told us what he saw on a night time especially it was both weird and bizarre.

    Just a thought, here's to more good news and you both catching a break at around 6 months

    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  2. #82
    Experienced User
    Join Date
    Dec 2017
    I have had concerns myself about delirium but his doctors never mention it. He is detailed about what he sees and , yes bizarre is a good word to describe it. Mostly, shapes and figures. Very odd. We see his pain med doctor but I really don't think its his medication. He has been on the same pain meds for the last several years and never experienced anything like this. Thanks for your reply.

  3. #83
    Experienced User
    Join Date
    Dec 2017
    Day 101

    Last Wednesday, James wasn't feeling well. He was having a lot of pain in his legs. He was sick early in the morning Thursday but we attributed it to the dose of neupogen. By Friday morning, he woke up with a sore throat that prevented him from drinking. Long story short, we drove back and forth Friday, Saturday, Sunday and today to receive fluids. Nothing grew in cultures and everything else checked out ok so we do not know what happened. He did have a low grade fever.

    One thing I didnt know is that James ANC dropped to 50 last week. By Friday it was 250. Today his preliminary was between 1000-1500. I asked why his red blood cells were ok but his white cells are continuously low. They do not know if he still has engineered cells in his body or if the engineered cells trained his new t cells to act like they did. I am not sure if his new t cells are now trained to fight CD19 which is in all of our b cells. Perhaps this is whats happening and why his ANC is so low.

    James is feeling much better today but it took a full week of rest and fluids to get him back to feeling good.He is also on Bactrim which lowers his white count so starting in June, he will stop teh Bactrim and start a new monthly treatment. It is a once a month breathing treatment to add antibiotics into his lungs.

    We left today without lab reports, so I will check on them in a few days and edit to include on this post. I hope everyone is well and enjoying life.

  4. #84
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Good that you are both off the roller coaster for now and have your bearings once again. This has been the year for unknown viruses. Candid doctors will readily admit that they are very relieved when unknown illnesses resolve on their own, as they could only treat symptoms and not causes. CAR-T seems to resemble transplant inasmuch as blood numbers fluctuate wildly and that is accepted as the normal course of things.

    Well, so far, so good.


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