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Thread: Car t

  1. #11
    Experienced User
    Join Date
    Dec 2017
    Day -2

    They call it "making room" for his new cells. James cells arrived cryogenically frozen last Thursday. The cells are approximately 30ml. He's set to receive them between 10am - 1pm Friday. We haven't been able to get a definitive answer on how many patients with James diagnosis have had Zuma 3. I know its very few, if any, here at Moffitt. I understand there is another therapy called Yescarta (sp) but because of his aggressive disease, Zuma 3 was the best option. Yescarta takes twice as long as Zuma 3.

  2. #12
    Moderator Top User
    Join Date
    Mar 2010
    Hope its all straight forward and uneventful Friday
    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. #13
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Exciting stuff, even if somewhat nerve-wracking for you. Yet, this is something to be thankful for, as we know what the alternative would have been just a few years ago.
    Last edited by po18guy; 02-02-2019 at 05:35 AM.

  4. #14
    Experienced User
    Join Date
    Dec 2017
    Day 0

    12:14pm. Infusion of 1.2 million engineered T Cells - Thank you Lord for this opportunity (ZUMA 3) Clinical Trial

  5. #15
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    As it is with transplant, the re-infusion is pretty anti-climactic. It's what comes after that holds the promise.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  6. #16
    Experienced User
    Join Date
    Dec 2017
    Day 1

    James had a pretty uneventful night. Everything went well no fevers or any signs of neurotoxicity. I spoke with the nurse and she said the earliest she's seen either is Day 2. I believe 93% of the patients experience both at some point. Some mild and some worse then others. Labs look good this morning Hgb 10.1 WBC 3.88 Plat 198. One comment from his night nurse surprised me.... she said when she came in last night and reviewed his chart, she was amazed he has been fighting this type for almost five years. Some nurses are more telling then others.

  7. #17
    Experienced User
    Join Date
    Dec 2017
    Day 2

    Today was a good day. James walked 17 laps beating yesterday 16 lap. He is a pretty competitive guy. I'm really proud of him. Earlier in the morning he did register a low bp at 88/57. He seems to be doing well though. His baseline is normally low 100's / 60's, so it wasn't much a concern. Some slight flushing in is face as well. Morning labs still remain the same. He's doing well.

  8. #18
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    So far, so good. With BP that low, have they considered something to boost it? While walking, there is the possibility that he could faint with such low BP. Don't ask how i know. Since my problem was related to the Vagus nerve, which dumps heart rate and BP, I received Atropine to speed things up a bit. Just musing here, as it may not apply to him at all.

    Good news overall. Glad to hear it.

  9. #19
    Experienced User
    Join Date
    Dec 2017
    Day 3

    As far as I know, they do not want to give fluids. Twice, they've talked about fluids to help with volume but when it comes down to it, they hold off. They did tell us that if they have to, they will and they have something to help with the BP if there is a real issue. Its my guess that volume and medicine interfere with the engineered cells.

    Today the "team" came in and talked briefly with us. Dr Locke explained that he can not guarantee that this will work and if it does, he does not know how long it will work. Because its a new therapy, there is no statistical information to learn from. Of course, we realize this. 9/10 patients at Moffitt receive CAR T for lymphoma. I don't even know if anyone else with my husbands type of leukemia has gone through this specific trial. I just know its rare because its a new therapy.

    Interestingly , the trial name is ZUMA which is a beach in California. (where KITE Pharma is) James is in ZUMA 3. 1,2,4,5, and 6 are other types like large B cell, childhood, lymphoma etc.

    I think I am seeing some neurotoxicity signs however, I'm not sure if its related to pain meds or the CAR T. He just seems a little off at times. The dr told us fevers would be the first signs so I am not sure. Anyway, everything seems to be moving along. There will be a bone marrow biopsy between Day 7 and Day 11.

    20 Laps walked today : )

  10. #20
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Research is interesting, no? Pioneering also. Trailblazing, certainly. Being part of a paradigm shift? At some point, it matters little if no one, or very few, have gone there before. The bright spot, the source of hope is that there is a there to go to. Upon arising each day, consider balancing everything, every breath - even life itself - against the outcomes only 10-20 years ago. The default is that you lose him. Each and every new therapy, clinical trial or risky procedure seeks to destroy that default.


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