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Thread: Car t

  1. #1
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    Car t

    I'm interested to know if anyone here has had CAR T therapy? My husband has been through the first stages (consenting and vital organ testing) of a trial for B cell ALL Philadelphia positive. He is patient 20 out of 100. Although scary, I am excited and completely in awe of the process of the collection and programming of the cells. To me, it is unbelievable what they can now do with cellular immunotherapy. I would love to hear from anyone that has had CAR T and what his/her experience has been.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Pretty new, pretty fresh stuff! Exciting, if somewhat nerve-wracking to begin something so completely new. Sometimes, new therapies feel like parachuting into the jungle - no map and only a machete. After a deep breath and a sigh, we begin whacking at the underbrush, hoping that we are not going in circles. Do let us know how it goes.

  3. #3
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    Hi, I know a couple on other sites, think both were Canadians and the may have been an American who had one two, all seemed to be doing ok and no one reported any major issues. Its a couple of months since any have been on the other forum so that's as much as I know.

    It does seem to be successful but not without risk.
    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.

  4. #4
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    Cell collection (aphaeresis) was very interesting. 150,000 cells were requested but my husband did 282,000. The process took about six hours and a representative from Gilead Pharma was waiting with a cooler to hop back on a plane and take my husbands cells to California. I have to admit I was amazed at the process and what I learned about how his cells will be "programmed." My husband had Marqibo as his bridge therapy and we are now awaiting arrival of his newly programmed cells. The risks are scary but I know he will get through this too. Thanks for listening. I will update during the different stages.

  5. #5
    Super Moderator Top User po18guy's Avatar
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    Balance everything against the acute leukemia - that is your baseline. Rare and/or difficult cancers require that the patient forge their own path through uncharted territory. Where you see uncertainty, others see hope. A few short years ago, before CAR-T, what would the options be?

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Hurry and you can catch this: A CAR-T presentation conference call/webinar later today, Tuesday, January 22nd.

    http://www.lls.org/events/car-t-cell...c1=22346&src2=

  7. #7
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    thanks for the update it would be good to have a thread on this treatment for those who follow, so if you can please keep going with the updates
    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.

  8. #8
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    Thank you po18guy. I am definitely going to listen to the presentation.

    Johnr - I will do my best to update. I am not in the medical field, so my information will come from our/my husbands personal experience. My husband's specific trial targets b cell ALL leukemia. The CAR T targets CD19 in b cell. My husband also has two mutations. (9;22) (q34;q11.2) BCR ABL1
    CD34 Positive CD79a Positive TdT Positive

  9. #9
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    Day -4 Central Line put in and first day of Fludarabine infusion.

    Day -3 (Today) Second infusion of Fludarabine.

    Tomorrow will be another day of Fludarabine, Cyclophosphamide, palonosetron, prochlorperazine, and mesna. Admission is on Thursday 1/31. Then, James will receive his own engineered cells on Friday 2/1.

  10. #10
    Super Moderator Top User po18guy's Avatar
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    Thank you for the update! Sad to say, those chemicals are all familiar. It does seem like they have to beat you up before they heal you - rather ironic. Here is hoping for great results!
    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.

 

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