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Thread: Car t

  1. #61
    Experienced User
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    Dec 2017
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    59
    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 appointments. Also, bone marrow biopsies at 60, 90, 180 days and so forth. He had a pretty extensive neurological appointment today. He continues to have some neurotoxicity so he will be monitored over the next two months with the neurologist.

    All in all, its been a great day .

    WBC 2.64
    Hgb 12.2
    Platelets 118
    ANC 1200

  2. #62
    Moderator Top User
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    Mar 2010
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    1,265
    Congrats, it must be a relief to have jumped that hurdle here's hoping the remaining issues resolved with time and remission becomes all you both want.

    John
    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.

  3. #63
    Moderator Senior User IndyLou's Avatar
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    Jan 2014
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    445
    This is such amazing news. I'm very happy to hear this...I wish you both a long and durable remission, but most of all, a happy one!
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED

  4. #64
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    10,179
    Excellent news! Upward and onward!

  5. #65
    Experienced User
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    Dec 2017
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    59
    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 working. His dr said that this is common and the fear is always infection, so we keep a low profile for now. No parties for us today but we are enjoying the Irish holiday. Happy St Paddys to you all. Enjoy the day.

  6. #66
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Good, good, good.

  7. #67
    Experienced User
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    Dec 2017
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    59
    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 Philadelphia chromosome or the second mutation is present and it is not. James will have his second biopsy this Thursday and another at 3 months post CAR T. James received a neupogen shot last week. Friday his ANC was 1700 but yesterday it was down to 1000. He is scheduled to receive another dose Monday.

    DR Shah talked about other plans he is working on should we see signs of it returning. He mentioned a new trial of chemotherapy and a trial that would involve James receive a healthy donors T Cells. It is really fascinating to hear his dr speak about whats happening and what options may be available. This time last year, we only new of Blincyto so we are thankful new therapies are being introduced and are possibilities should this come back. I pray every day, CAR T is the cure. James had gone through 7 different therapies over the last four and a half years. Three were extremely difficult with Blincyto and CAR T being the most difficult to go through.

    For now, we continue to live and love life every single day. I hope you are too.

    WBC 2.64
    Hgb 13
    Platelets 108
    ANC 1000

  8. #68
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    An excellent report and an excellent attitude. Thank you very much for continuing this extremely informative thread on a new and not all that well known option in treatment.

  9. #69
    Moderator Top User
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    Mar 2010
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    1,265
    Thats excellent and as good as you could hope for, its been a real insight to follow this thread and understand more about the treatment.

    I do hope this is the magic bullet that's gives a long remission/cure.

    John
    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.

  10. #70
    Experienced User
    Join Date
    Dec 2017
    Posts
    59
    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 was saying but he did realize after the fact and seemed like he had no control over it. Like thinking and talking out loud. Then after church, we went to breakfast and he told me he was seeing two of me. Double vision. He has never said anything like that in the past, so I am not sure if its the neurotoxicity coming around again. He has been extremely tired lately because he hasn't been sleeping well. We have a dr appointment in the morning so maybe his doctor will have some answers. Hopefully we'll get preliminary results from Thursdays bone marrow biopsy. It might be too early though.

    I'll update tomorrow.

 

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