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  1. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    We have a follow up tomorrow to monitor last...

    We have a follow up tomorrow to monitor last months results. It also has been five years since the bone marrow transplant and just over five year diagnosis. James seems to be doing well so I donít...
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    Yes. Check with your oncologist. If anything, it...

    Yes. Check with your oncologist. If anything, it should ease your mind. Perhaps your having pain from the cold weather. My husband has some arthritis from treatment and his dr just told him the cold...
  3. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    ClonoSeq came back negative. Fantastic news on...

    ClonoSeq came back negative. Fantastic news on our Anniversary. They will monitor the other indicators to be sure he remains in remission.
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    Hello Brucecav - James was having pain in is...

    Hello Brucecav - James was having pain in is lower back. They ran all the usual labs but didn't see any leukemia. They continued to observe with a CT scan and could see something but were not sure so...
  5. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    9 month post CAR T biopsy reveals no leukemia...

    9 month post CAR T biopsy reveals no leukemia however the PCR test shows 0.00050 Philadelphia chromosome. We are waiting for ClonoSeq results to confirm or deny the PCR results. We should hear...
  6. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    Thank you , Mary and congratulations to you!...

    Thank you , Mary and congratulations to you! Po18guy, youíre 100 percent correct and thank Hod for the ability to complain.

    Todayís biopsy went well. I did see some lab work that o havenít seen...
  7. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    Po18guy - Steroids definitely helped. I watched a...

    Po18guy - Steroids definitely helped. I watched a documentary years ago about a man that had the same diagnosis as James. It was called First In Human. Anyway, they were so disappointed when they had...
  8. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    Monday will be Jamesí 9 month post CAR T bone...

    Monday will be Jamesí 9 month post CAR T bone marrow biopsy. We have been enjoying our time together. We havenít been to Moffit in a few weeks and all seems to be going well. Still dealing with a low...
  9. Replies
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    My husband has been treated for ALL at Moffitt...

    My husband has been treated for ALL at Moffitt since 2014. Over five years with Dr Bijal Shah. Yes, ALL and heís in remission.
  10. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    Thank you very much

    Thank you very much
  11. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    Hello Johnr - I tried to find the program you are...

    Hello Johnr - I tried to find the program you are referring to on BBC but what I found is that it isn't available anymore. I could only view the trailers. I really wanted to see it.

    James is...
  12. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    I would say that the biggest differences are...

    I would say that the biggest differences are neurotoxicity did not happen when my husband has his transplant in 2014. Also, my husband's WBC was 0 during transplant and with CAR T , his counts didn't...
  13. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    clonoSEQ results are in, there is no evidence of...

    clonoSEQ results are in, there is no evidence of cancer. : )

    clonoSEQ definition:

    The clonoSEQ Assay measures minimal residual disease (MRD) to monitor changes in burden of
    disease during...
  14. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    6 months Post CAR T Yesterday we received the...

    6 months Post CAR T

    Yesterday we received the results from James' bone marrow biopsy from July 29th. " No morphologic evidence of B lymphoblastic leukemia." Yay! We have not received the flow or...
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    I hope you both are doing better. Brucecav ,...

    I hope you both are doing better.

    Brucecav , I hope you enjoyed Disney. You were about and hour and a half from us.
  16. Replies
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    Hi Brucecav! I am sorry to hear about the nodules...

    Hi Brucecav! I am sorry to hear about the nodules - by now, I'm sure you've seen your dr. I hope all went well and you are getting the care you need.

    My husband is doing really well. He went...
  17. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    Happy 4th Birthday po18guy!

    Happy 4th Birthday po18guy!
  18. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    Hello IndyLou We are a few blocks from the...

    Hello IndyLou

    We are a few blocks from the gulf in Pinellas County so we feel the gulf breeze here too. It is extremely hot right now. Fortunately, we have A/C , the gulf, and a pool and we...
  19. Replies
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    Hello fighterm - My husband is 5 months post CAR...

    Hello fighterm - My husband is 5 months post CAR T for ALL PH positive B cell leukemia trial - ZUMA 3.

    I have a post about his CAR T journey on this forum. Listed as "CAR T"
  20. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    5 months post CAR T ZUMA 3 Today was James' 5...

    5 months post CAR T ZUMA 3

    Today was James' 5 month post CAR T check up. His labs were good and it was a quick visit. I'm not sure if its delirium, but he still talks out loud and doesn't realize...
  21. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    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...
  22. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    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...
  23. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    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...
  24. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    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...
  25. Thread: Car t

    by abeucher
    Replies
    115
    Views
    14,212

    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...
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