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Thread: Car t

  1. #21
    Experienced User
    Join Date
    Dec 2017
    Day 4

    As expected, late last night, James experienced some neurotoxicity and CRS. At about 9:30pm on Day 3, James registered a fever of 102.6. That was the start of a long scary night. His fever was managed all night with Tylenol but this morning after a rise of 103, he received fluids and CIPRO. The morning was full of evaluations by the team drs as well as neurologists and infectious disease drs. After a chest scan and scan of his brain, all of which were negative, his fever subsided and we had a good day. This evening, I have noticed more neurotoxicity, I must say its head turning. Its difficult for me to talk to my husband and listen to him speak of random untrue happenings. He is so serious and I am left scratching my head often wondering where he came up with what he just said. For example, he was speaking today of his brother and when he came to visit him yesterday. His brother hasn't been to the hospital in the last year. I understand this will pass but its an odd side effect. They have given his current side effects a grade 1, so thats good and we march onward. I hope tonight is uneventful, I'm tired too.

    I'm working on the balance po18guy. Thank you for your comment

  2. #22
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    I consider all of the side effects, all of the discomfort, all of the co-morbidities to be the the new "cost of living." Bear in mind also, as to yourself as caregiver, that it is more stressful and difficult to watch suffering that it is to actually suffer. Stress on one is stress on both. Are you taking good care of yourself? That includes locating a temp fill-in so that you can take some time off to de-compress and maybe schmooze with old friends., etc.

  3. #23
    Experienced User
    Join Date
    Dec 2017
    Day 5

    Today was not fun. During the early morning hours, James had fevers of 102 - 104+. They used cooling blankets and finally had to administer Dex (steroid) and Tocilizunab (TOCI) along with fluids. It was an uneasy feeling for me because I thought that the steroids would reverse the engineered T cells but I was told it wouldnt and that James could still reach remission. The dose was low and the 104+ fever would've done more damage left untreated. James also had so much confusion that they ordered an MRI, eeg and a lumbar puncture. The LP and MRI were negative but the eeg showed pre seizure activity. The drs ordered additional anti seizure meds. He is currently on zeppra and the additional is Lacosamide. The TOSI should keep his fevers under control an hopefully tonight will be uneventful. This is extremely hard to watch your loved one go through but it is his only option. I feel like he's receiving the best care and he's in good strong hands.

    and yes, po18guy, we have a strong support system with our two adult sons but also our friends. Thank you for your thoughts and comments

    WBC .28
    Hgb 9.3
    Platelets 70
    C Reactive 22.23
    Ferritin 1544

  4. #24
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Steroids suppress the marrow, where blood cells are created. But, CAR-T side-steps that process and takes already produced T-cells and re-introduces them. They clone themselves outside of the marrow, so marrow is not even needed for them to be effective. Technically I suppose, CAR-T could be received just after transplant when the marrow was making no cells at all.

    Very good that you have such support. Let those kids be of some use so that mom can de-compress now and then!

  5. #25
    Moderator Top User
    Join Date
    Mar 2010
    Hi I cannot offer advice but can sent some positive vibes to help you all through this tough time. I do hope things settle soon and the fevers subside.

    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.

  6. #26
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Here is a 13 minute video entitled "CAR-T cells for dummies" by Dr. Carl June from Hematology Times:


  7. #27
    Experienced User
    Join Date
    Dec 2017
    Day 6

    Yesterday was another day like Day 5. Reversing drugs had to be administered because of high fevers but especially the neurotoxic side effect. I thought Day 6 was the most difficult until early today, morning of Day 7. Fevers around 8pm last night and all through the night. The nurses took excellent care of James but they worked hard. Today James will have a bone marrow biopsy. Before the trial started, he agreed to this additional test. They like to see the immediate response but it is optional. He agreed for science and research. I'm hoping the side effects subside soon. It is a lot to go through, but it will all be worth it soon. The nurses just left but will be back in less than 12 hours. Nurses are very special people.

    Day 6 Day 7
    WBC .17 WBC .54
    Hgb 8.5 HGB 8.5
    Platlets 43 Platelets 28
    C Reactive 7.4
    Ferritin 2483
    Last edited by abeucher; 02-08-2019 at 12:59 PM.

  8. #28
    Experienced User
    Join Date
    Dec 2017
    Thank you. I shared this with my family. (the video)

  9. #29
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    I don't know a lot about cart-t, but I'm fascinated by the science behind it, and I'm so grateful to you for sharing these accounts with us. Your husband is a true pioneer, and I look forward to hearing good news soon. Best wishes to you both!
    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
    Spring 2019 - NED

  10. #30
    Experienced User
    Join Date
    Dec 2017
    Day 7

    After a difficult night last night, James received Dex today and Tylenol IV. He is also receiving some antibiotics. He had a nice shower (you have no idea how much work goes into getting a shower) and is out walking with PT now. My husband is a very mild mannered, calm, cool and collective man. Today, rightfully so, he's irritable. Compared to others, still extremely sweet and loving.

    The reason for the early update is, two Doctors accompanied Dr Jane today. A Dr from Denmark and a Dr from Italy. The doctor from Denmark observed and smiled mostly, and the dr from Italy asked a few questions regarding neurotoxicity. To hear her accent was lovely. The more beautiful minds we have researching and learning, the closer we get.

    IndyLou - thank you for your comments. I do not have the medical knowledge to write medical terms and some medications however, I do my best from a spouses perspective. My husband is 53 He was diagnosed a few months before his 49th birthday in 2014. He is ALL ph+ with a newly diagnosed mutation in June 2018.
    Last edited by abeucher; 02-08-2019 at 07:12 PM.


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