• clinical trials

    Asked by judithj on Wednesday, July 18, 2018

    clinical trials

    New node is cancerous and resistant to R-EPOCH so...clinical trial seems like only next step.
    I went through 2 sessions of R-CHOP and 3 of R-Epoch before this new node found. All other nodes gone. Dismal news. Anyone out there have ideas?

    8 Answers from the Community

    8 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      I have lung cancer so have a completely different experience, but I was in a clinical trial for 4 years. If I could go back into a trial right now, I definitely would. I loved being in a trial.

      I am so sorry that you got the dismal news. What clinical trial(s) are you looking at?

      3 months ago
    • carm's Avatar
      carm

      Judith,
      I am an oncology nurse. If you failed at these therapies then ask your heme/onc if you are a candidate for CAR-T cell therapy. If the study they are suggesting is not a CAR-T study then ask if doing this study will exclude you from any CAR-T study or therapy. For blood cancers this is the new frontier that really shows remarkable promise. Best of luck to you!

      3 months ago
    • judithj's Avatar
      judithj

      Thank you both. Yes, the CAR-T cell clinical trial was suggested. We now have to find out where and if I fit their parameters. I'm asking UCSF and my Oncologist is looking at Stanford to see if they have any going. Thank you again for your responses, it's comforting knowing there are others out there.

      3 months ago
    • geekling's Avatar
      geekling

      you are looking at great places to be decancerfied.

      Best wishes and excellent luck.

      3 months ago
    • carm's Avatar
      carm

      @judithj,
      I have a few patients in the process of CAR-T cell therapy and things are going great for them. I truly hope you qualify. Best of luck to you.

      3 months ago
    • po18guy's Avatar
      po18guy

      A lot depends upon which type and sub-type of lymphoma you had - and if a biopsy of the new node confirms that it is 1) a malignancy and 2) if it is the same type.

      Once the type is determined, treatment may be tailored, as much as possible, to that type.

      I am in my 4th clinical trial - the first of which made it possible for me to be here. I received what was essentially a clinical trial regimen at my second relapse. Since all three drugs were approved, what I received was a novel combination of existing drugs.

      In 2015, I was actually fighting three simultaneous cancers - two aggressive T-Cell Lymphomas (both with poor prognosis) as well as 20q deletion Myelodysplastic Syndrome (MDS - precursor to leukemia) at 26% of my marrow.

      What I received was intended to treat B-Cell Lymphomas, but was given to me as we had simply run out of lymphoma drugs to use. That combination is called TREC (Treanda, Rituxan, Etoposide, Carboplatin). The Rituxan was removed, as it is not effective in T-Cell Lymphomas.

      Anyway, I was stage IV at that point, with about two dozen tumors and lymphoma invading my spleen and small intestine.

      This is only an anecdote, after only but two infusions, I was in radiological full response. My research hematologist was amazed. There was no evidence of any of the three cancers. It was miraculous. I went on to have a transplant.

      Later, it was found that there was some residual MDS, but my new immune system has eliminated that. Such novel combinations are certainly worth asking about.

      To give some hope, this was my 5th salvage regimen, and arrived after I had failed four other single-agent regimens and had four PET/CT scans in a row which showed "progression."

      Cancer free and have had no cancer treatment for three years as of this month.

      3 months ago
    • judithj's Avatar
      judithj

      Thank you. Mine is NHL diffuse large B-cell lymphoma - double hit (aggressive). The R-EPOCH procedure was very effective for 5 sessions. There is now one new node which was biopsied and shown to be similar to original cancer type. This one is resistant to the chemo I was receiving.

      Your response was helpful as I can see you went through more than one trial - hope is always there. I am hopeful that I will fit a clinical trial for immunotherapy.

      Thank you so much for your response, I really appreciate it.

      3 months ago
    • po18guy's Avatar
      po18guy

      judithj, clinical trials are how medical science is advanced. If TREC is not an option, then I would research trials. It was my 5th salvage regimen that put me in remission for transplant. Dunno if it will fit, but here's the synopsis:

      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 TREC (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.
      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 measureable - 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.
      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.
      05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
      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 of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
      03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
      To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

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

      Never give up hope!

      3 months ago

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