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  1. Thread: Car t

    by abeucher
    Replies
    88
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    6,662

    IndyLou, No. Not yet. Because his immune system...

    IndyLou, No. Not yet. Because his immune system is so low, we have not been able to travel. Hopefully this fall. I imagine it will depend on the weather.

    James seems fine today. It certainly has...
  2. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day +129 (Monday) James went in for his...

    Day +129 (Monday)

    James went in for his check up Monday morning. He was also scheduled to start monthly Pentmadine treatments. Shortly after treatment started, James began choking and then he...
  3. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 118 Hello. We've had a few weeks off (from...

    Day 118

    Hello. We've had a few weeks off (from apts) and everything has been good. We haven't been able to travel. James' dr wanted us to stay close unless we had a place to go for labs and since...
  4. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 101 Last Wednesday, James wasn't feeling...

    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...
  5. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    I have had concerns myself about delirium but his...

    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...
  6. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 94 Post 90 day biopsy " No evidence of...

    Day 94

    Post 90 day biopsy " No evidence of malignancy in this sample." Yay! How about that? The next biopsy will be at 6 months post CAR T. James asked for the next three months off and the...
  7. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 80 Nothing but good news to report. James...

    Day 80

    Nothing but good news to report. James is doing really well. He had a check up today and his lab work looked good. We scheduled his 90 day post CAR T biopsy for May 1st. James is feeling...
  8. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 67 Biopsy results are in (post 60 days) he...

    Day 67

    Biopsy results are in (post 60 days) he remains cancer FREE. Yahoo! He's feeling better too. We're not sure what happened last week but his dr cancelled the LP and MRI. His lab work looks...
  9. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    I will ask about the medication, thank you for...

    I will ask about the medication, thank you for the suggestion. James could barely stay awake today during his appointment. He was exhausted. He actually had a hallucination during his appointment. He...
  10. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 58 I saw a few things today I haven't...

    Day 58

    I saw a few things today I haven't seen in a while. In church this morning, James was speaking out loud a few times. He didn't realize what he was saying and I couldn't understand what he...
  11. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 53 Yesterday's visit went well. Dr Shah...

    Day 53

    Yesterday's visit went well. Dr Shah went over James' molecular report from his 30 day biopsy. There are no signs of molecular leukemia. This specific test also identifies if the...
  12. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 46 James continues to do well. He's...

    Day 46

    James continues to do well. He's getting stronger every day. His ANC remains low ranging from 400-700 last week. He did not receive any help from nuepogen so this is his own immune system...
  13. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 35 The report says : No evidence of...

    Day 35

    The report says : No evidence of residual b lymphoblastic leukemia. Patient is in complete remission at this time. Yahoo!

    We will continue with 2x weekly labs and follow up...
  14. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 34 Thank you IndyLou. James had a bone...

    Day 34

    Thank you IndyLou.

    James had a bone marrow biopsy last Friday (3/1). We had an appointment yesterday but we didn't get any preliminary results. His next appointment is Friday and we'll...
  15. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 26 We've been off for the last few days...

    Day 26

    We've been off for the last few days from office visits. James has been seizure free and seems to be doing well. He continues to depend on oxygen and his walker but he is getting stronger...
  16. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 20 After spending a few days in the...

    Day 20

    After spending a few days in the hospital, James is back home. Tuesday he had some seizure activity but they did a carotid check, a lumbar puncture and another eeg. All checked out ok so...
  17. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 17 Back too soon - This morning James had...

    Day 17

    Back too soon - This morning James had a check up. Everything looked really good. He continues to have mild toxicity and relies on oxygen to keep him above 92. He just finished high fiving...
  18. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 14 Zuma Zuma Zuma - We are home! Today...

    Day 14

    Zuma Zuma Zuma - We are home! Today James' Co2 level was 38 so they wanted to do a ABG test just to check and see if it was something other then not enough hydration. Once we got the...
  19. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    po18guy - I sure hope you are able to be off...

    po18guy - I sure hope you are able to be off steroids someday. My husband was a different man on them. I have heard the term "roid rage" and I understand it now. Ugh I truly wish the best for you...
  20. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 13 James' neurotoxicity continues to get...

    Day 13

    James' neurotoxicity continues to get better. He's getting better and better with his assessment answers. He seems so different now though. He's vey soft-spoken and doesn't really say too...
  21. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 12 I am starting to see signs of the old...

    Day 12

    I am starting to see signs of the old James : ) Much better today. With deep thought and concentration, he was able to count backwards from 100 by ten. There were a few stumbles but much...
  22. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 11 Found a lucky penny in the parking lot...

    Day 11

    Found a lucky penny in the parking lot today. : ) The team came around and although James is not going home today, I'm excited to report the bone marrow report came back as .5 after only 7...
  23. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    IndyLou - I will have to ask again, but I think...

    IndyLou - I will have to ask again, but I think the CAR T cells affect the central nervous system and the toxicity in the brain is when the brain barrier fluid is affected. I will try to get a better...
  24. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 10 James had another fever free night....

    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...
  25. Thread: Car t

    by abeucher
    Replies
    88
    Views
    6,662

    Day 9 Another night fever free. Heart rate...

    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...
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