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Thread: Car t

  1. #101
    Experienced User
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    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 drop that low. He had severe mucositis with his transplant and did not have that at all with CAR T. I am sure there are many differences but honestly, I cant think of anything more than what I mentioned already.

    For me, as his wife, the CAR T was scarier. Even though the neurotoxicity was expected, that was scary to see. My husband also had very high fevers and the seizure activity and the stroke. All of which he fully recovered but that was scary.

    Not sure if you knew my husband had a bone marrow transplant in December of 2014. His older brother was a perfect match.

  2. #102
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    From watching a programme in the UK following 2 patients through treatment I would say the neurotoxicity is the massive difference and some of the issues that develop as part of that,
    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. #103
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    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 about 7 months post CAR T (ZUMA 3) He seems to be doing well except for his low ANC. It was 280. He did receive a neupogen injection and his ANC went up to 2800. James has had neupogen previously but this time was different. He didn't feel well at all. Most bone pain and with the cell production he underwent, it is understandable.

    They will watch his labs weekly and nothing else to report other than we dodged a bullet here in Florida regarding Hurricane Dorian but please pray for everyone in the Bahamas. Pure devastation there and I do not know how they will recover. So sad.

  4. #104
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    Hi if the programme is ever shown again I will try to download it and will see how it may be shared as it was really good and insightful. Fingers crossed that things continue to improve and settle for James.
    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.

  5. #105
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    Thank you very much

  6. #106
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    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 immune system but no fevers or coughs or colds.

    I hope everyone else is doing well too. Please remember to enjoy every minute. 😊

  7. #107
    Super Moderator Top User po18guy's Avatar
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    Good! Was wondering about him. Too late, but did you see that steroids seem to reduce the worst side effects of CAR-T?

    Timing is everything...

    Very good to hear from you!
    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.

  8. #108
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    good to see another positive update, long may it last and fewer hospital visits must feel good
    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.

  9. #109
    Experienced User
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    Dec 2017
    Posts
    80
    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 to administer steroids (in the film) so when they said they were going to with James , I was nervous. I talked to his dr and he said they use a specific dose and itís effective without destroying the CAR T cells. He used more scientific words.

    Thanks for thinking of James (both of you) we are so thankful for the time off and the good days. Honestly, we go about our days and really donít think about cancer. And yes, itís getting harder and harder to go to Moffitt. We just want to spend time at home and with our family.

    Recently a very dear friends husband had a heart attack. Today he had a triple bypass. Heís 58. Its not cancer but I can see the changes in them since this happened. We all have always appreciated life and our family but when something like this happens, I think weíre all a little more vulnerable with our words of love. I make sure I tell my friends and family how much I love them. Iíve always done that but maybe I do it more often now.

    Iíll keep you posted on the biopsy. I know itís going to be good though.

  10. #110
    Senior User
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    Apr 2012
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    111
    Hello fellow CAR T recipient. Dropping in at Cancer Forums to see how everyone is doing and read your CAR story. It sounds like you guys are doing great!!! I know it comes with massive hiccups BUT I want to offer hope and support in telling you that Iím five years post CAR-T (for DLBC NHL) as of Oct 1. You mentioned First in Human a couple of times (i also watched the program and received CAR at nih) and understand how that outcome may frighten you BUT by now you know that every one of us is a unique case and that your husband, with his doctors and your enormous support, has beaten the odds. He is not that patient in that program. And there are many ways to use steroids to great benefit (understandably with side effects). Just want to say congratulations on how far youíve come and very best wishes to you and your family. ❤️

 

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