• Urgent : What next?

    Asked by asn2212 on Saturday, July 21, 2018

    Urgent : What next?

    Tried all chemo - RCHOP, Resection, RDHAP, RICE, RGCD, Ibrutinib, Lenalidomide, ileostomy. Indecision about CAR-T due to expenses and risks. What is the next best treatment to try for Refractory DLBCL that has spread given the ileostomy and poor health?

    7 Answers from the Community

    7 answers
    • carm's Avatar
      carm

      @asn2212,
      Hello, I am an oncology nurse. For everything that you have tried you have well exceeded the cost of CAR-T therapy and that is a one time cost. I have a few patients with lymphoma, and with multiple myeloma who have either done CAR-T, or in the process of it with no serious adverse events to date. Otherwise there is an ongoing trial for CUDC-907 that is still in early phase trial and showing promise. You might ask your doctor about it. Best of luck to you.

      about 1 year ago
    • GGP's Avatar
      GGP

      I haven't had those drugs, but I wanted to wish you the best in getting treatment that will help you.

      about 1 year ago
    • BoiseB's Avatar
      BoiseB

      I have a friend who had a new treatment for Lymphoma. She is doing well now. She told me what it was but I have forgotten. Have courage there are a number of new treatments out there.
      May I put you on my prayer list.

      about 1 year ago
    • carm's Avatar
      carm

      Kymriah is the CAR-T cell therapy.

      about 1 year ago
    • geekling's Avatar
      geekling

      No new information. Just wanted to stop by to wish you good luck, a working treatment and renewed good health.

      about 1 year ago
    • po18guy's Avatar
      po18guy

      Three years ago this month, I was fighting three cancers simultaneously (Peripheral T-Cell Lymphoma - Not Otherwise Specified, Angioimmunoblastic T-Cell Lymphoma, and 20q Deletion Myelodysplastic Syndrome, a precursor to Acute Myeloid Leukemia). What was used in my case had very little hope of being effective. The lymphoma (PTCL-NOS) had defeated CHOEP-14, GVD, Romidepsin, Belinostat, Pralatrexate and Alisertib.

      My hematologist gave me a variation of TREC (Treanda, Rituxan, Etoposide, Carboplatin), which is designed to reduce the toxicity of ICE. The Ifosfamide in ICE is removed and replaced with Bendamustine (Treanda). I did not receive Rituxan as it has no effect on T-Cell Lymphomas. So, it was Bendamustine, Etoposide and Carboplatin.

      24 tumors, spleen involvement and invasion of my ileum were eliminated in two infusions. Radiological full response. Quite a relief after four successive PET/CT series revealed disease progression. Worth asking about. If doctor resists, find another! Go to another facility if possible - an NCI designated comprehensive cancer center.

      One other drug which may be more effective than Rituxan is Arzerra (Ofatumumab). It is a monoclonal antibody like Rituxan, but is considered to be more potent, destroying (lysing) B-cells for a longer duration than Rutuxan, as well as killing B cells which express a lower level of CD20.

      Also worth asking about.

      about 1 year ago
    • icrazyhorse's Avatar
      icrazyhorse

      In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of July 13, 2018, she has been in complete remission for 27 months. Clinical trial studies show that CAR-T cells may result in long-lasting remissions for some people who have follicular lymphoma. There is more information on CAR-T for fNHL patients and people considering CAR-T at https://fnhlben.wordpress.com/

      Other non-Hodgkin lymphoma sites I visit often are:
      http://lymphobob.blogspot.com/
      http://www.lymphomation.org/#what-is-new
      http://www.lymphoma.org/ (look for free "Ask the Doctor" meetings near where you live)
      http://www.lls.org/

      about 1 year ago

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