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Thread: Car t

  1. #31
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    Day 8

    James had a good night last night. No fevers! Yay! Around 5am his heart rate was lower than normal. It sustained around 52-57 and has continued the same throughout the day. He also has a lot of confusion. I think today is worse then other days. Steroids continue as well as antibiotics and keppra. James needed a little insulin too. He's never had a blood sugar issue but I guess the steroids raise the glucose level. The drs said he wouldn't need insulin in the future.

    He expressed to the doctors that he wanted to go home today. They said absolutely not today or tomorrow and needless to say, James was upset. He's actually angry. I think most of the anger comes from him not being in control of his life. They have bed alarms on his bed, chair alarms on his chair and a very intrusive camera at the foot of his bed. Someone is watching at all times. He does not like this at all and wants to go home. He can not move freely in the room without an alarm going off or someone speaking to him over the camera. I understand why its here, but I understand why James feels the way he does. It has been a very long road.

    We walked one and half laps today. He was exhausted and ready for a nap. Before he goes home, he must be stronger physically, be off all IV meds and the neurotoxicity, must be better. Three to four weeks in patient is standard for ALL CAR T. I'm hoping for Valentines Day.

    I cant wait to see the bone marrow biopsy report. I really feel like he's going to be cancer free. I think this is working really well for him.

    WBC 1.24
    Hgb 8.4
    Platelets 23
    Ferritin 1997
    C Reactive 4.02

  2. #32
    Super Moderator Top User po18guy's Avatar
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    Let us hope that the worse he feels, the worse the leukemia feels! I felt like I was in jail post-transplant, and I was there only two weeks. The transplant did not kill me, but the time in "lock-up" almost did! Having the camera and the mysterious voice must be almost Orwellian for him. Ugh.

    How to motivate him? The only way out is to exercise his way out. Is he eating well?

  3. #33
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    Yes he is eating pretty good. He loves the western omelet here. They have a food court downstairs. It offers anything and everything you want. Of course, his food is prepared separately, his menu offers more than you can imagine. Thats one thing he doesn't complain about. He does not tell me he's hungry though, I actually have to tell him I'm going to order him breakfast or lunch. He usually eats twice a day and maybe 75% of his meal.

    Speaking of jail, have you ever slept on one of the cots? I always say it feels like a prison bed. There is nothing like home. Its the best medicine ever.

  4. #34
    Super Moderator Top User po18guy's Avatar
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    You mean those Soviet Bloc torture devices? DW tolerated one of the folding chair/beds for the same two weeks. A wonderful compromise, being neither a good chair nor a good bed. Perfect! Good that he is eating. Are energy drinks out of the question?

    We rented an apartment for the 100 days post-transplant and furnished it rather sparsely, for obvious reasons. But, that cheapo Wal-Mart mattress never felt so good! Half of it is the what (sleeping) and the other half is the where (anywhere but the hospital room).

  5. #35
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    Every day there is a neurological test given. Questions like year, month, what city and state, where are you, counting backwards by ten from 100 and writing a sentence. They are extremely difficult for him. Today was the most difficult however, I see my husband finish regardless of how long it takes to complete the counting and the writing. One day writing the five word sentence took close to an hour but he finished. I thought it was admirable that even though the drs leave before he completes, my husband perseveres to finish the task.

    Today a mid level explained to me that its classic in the CAR T treatment. so my new word is :

    Perseverance:
    steady persistence in a course of action, a purpose, a state etc. especially in spite of difficulties, obstacles, or discouragement. continuing in the state of grace to the end.

  6. #36
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    Hi again, some real insight from what your sharing which will be invaluable for those that will follow, very different from reading the reports and conference papers.
    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.

  7. #37
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    Day 9

    Another night fever free. Heart rate continues to stay 55-58 range. Labs were drawn to check for any cardiac issues but all was clear. James continues with neurotoxicity. He has a lot of random thoughts. It's still pretty bad. The drs say it will all reverse. Thank God.

    He hasn't been able to walk the floor because of his orthostatic vitals. He has about a 30 point difference between laying down and standing. This is why there are bed and chair alarms as well as the "eye in the sky." James continues to receive 10mg of Dex twice a day but they are cutting the dose tomorrow. He is extremely irritable while on Dex. The drs also believe he's a little shaky from the steroids too.

    A year or so ago, I watched a documentary called First In Human. Its about 5 patients that underwent the "first in human" clinical trials. One patient had the same exact diagnosis as my husband. He was the first to receive CAR T for leukemia. I believe it was in 2016. I am having a hard time remembering the exact dates. Anyway, he ended up receiving steroids and he was upset because the steroids stopped the process of the CAR T cell. When James started the steroids, I worried for the same, but the drs told me they do not stop the process of the engineered cell.They said its a small dose. I am sure they've improved so much in the last few years.

    The bone marrow biopsy report is not back yet. I am anxiously waiting for it. With everything he's been through this last week, I believe its going to be really good.

    If you are reading this, please remember everyone is different and may respond differently. This is just an account of James' treatment and his response.

    WBC 2.14
    Hgb 8.4
    Platelets 25
    Ferritin 1413
    C Reactive 2.24

  8. #38
    Super Moderator Top User po18guy's Avatar
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    Good! Now, to work on those pesky details! As I understand it, the T cells used are mature, peripheral blood T cells. Thus, immune suppressant drugs would not affect them (or very little), as dex, pred and the other nasty poisons act on the marrow and its production of immature cells.

    It is somewhat surprising - but then again maybe not - that CAR-T and transplant seem like parallel journeys in many ways. I forget how much pred I received in-patient, but it was 95mg daily once released. If not for my faith, I believe that the three years of steroids would have me in the loony bin by now.

    There are so many new and developing aspects of this cancer journey that it is difficult to keep up!

  9. #39
    Moderator Senior User IndyLou's Avatar
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    abeucher, I remain fascinated by the story of your husband, and find myself really looking forward to your updates. I'm interpreting what I've read about the last few days, is that maybe the worst is behind him? Can you tell us more about the neurotoxicity issues? What's causing them, and is that leading to the confusion and irritability? Is it from the cart T, or something else?

    Anxiously awaiting good bone marrow results!

  10. #40
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    Day 10

    James had another fever free night. His heart rate stayed in the 50's however he did drop at times to 46-48. I believe the drop in the heart rate is from CAR T and the neurotoxicity. Since your brain sends signals, I assume that if you have toxicity, it must affect how your brain is communicating with your heart, organs etc. I will have to ask the doctors about that.

    James continues to be extremely confused this morning. He does not know the year, what month it is or the day of the month. On Day 0 - he was asked to write a short sentence that he would continue to write every day. Its five words. The first four days he wrote the sentence without any difficulties. Day five , his writing started to get larger and was slanted. Day six, he took almost an hour to complete the sentence and its barely legible. The following days are legible but it took so much to get the words on the paper. Today, he could not get started. He's still working on it now. Over the weekend, he had three pieces of paper that he shuffled through for an hour and a half. He never wrote on the paper. He methodically straightened them and shuffled them around. He sees animals, people etc. It is extremely difficult for me to see him like this but I trust the drs that this is working for him and everything is going well. They said they are pleased with everything so far. They explained again the toxicity will subside and go away.

    It is my understanding that the steroids suppress the immune system. So because James' immune system is suppressed, that means the CAR T cells are suppressed. Today they started to reduce the Dex. Does this mean that the CAR T cells will not be suppressed and the neurotocxity will be even more dominant then it is now? Honestly, I cant imagine. I asked his dr if this is what other patients have gone through and he said yes but not to the degree James has. James has more irritability and is easily agitated, the team believes its from the steroids. He threatens every day to walk out of here. Hes not in the right frame of mind and he just wants to go home. He does stay though because I think he realizes he needs the treatment to live. For me, this is a full time job (24/7) trying to keep him in the right frame of mind when truly he has no reasoning ability at all. I don't know how to explain it.

    I believe the worst is over in regards to fevers. I am just not sure about the neurotxicity. I think it could get worse if thats even possible.

    If you are going through CAR T, I would suggest your caregiver have plenty to do to keep you busy. We read, watch movies, play cards but sometimes we do nothing but talk. Please remember, everyone is different. Each persons response could be different.

    On a good note, James walked three laps today with the PT and the OT. I didn't think he was capable of making it out the door. I was wrong. James continues to impress me every single day with his perseverance and strength.

    WBC 2.53
    Hbg 9.6
    Platelets 35
    ANC 240 (dropped from 490 yesterday)
    Ferritin 1207
    C Reactive 1.53

 

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