PTCL-NOS Belinostat

IrynMaydin
IrynMaydin Member Posts: 12
in Lymphoma (Hodgkin and Non-Hodgkin) #1

As some of you know, my husband has battled PTCL-NOS for almost 2 years. He was refractory to CHOEP. He had an initial response to Brentuximab Vedotin and Romidepsin, but in less than 6 months, had progressive disease 

We saw Dr Shustov last month and he recommended Belinostat. After 5 infusions (one cycle ), his nodes swelled substantially. We're certain its progressive disease. We have an appt with our local onc today. We're almost certain they're going to insist my husband complete 2 more cycles. Has anyone taken Belinostat, experiencing substantial node swelling, but tge drug was actually working?

The last time we met with our local onc, we asked that he touch base with Dr Shustov, but he refused. Our local onc is at an NCI cancer center and there are no other NCI cancer centers in our city. We feel like they have us over a barrel. We were going to make another trip to see Dr Shustov about what we should do next, but he's on sabbatical until the end of October 

 

Feeling we're losing the battle and can't get help....... If anyone has experience with PTCL and Belinostat, please chime in. 

 

 

 

Comments

  • po18guy
    po18guy Member Posts: 1,509 Member
    #2
    There is a T-Cell Consortium

    There is a T-Cell Consortium that Dr. Shustov and others are actively involved in. They collaborate and exchange information and ideas. If your doctor is not a member of it, is unaware of it or refuses to communicate with them, I would drop that doctor. If your doctor is an oncologist, I would run for my life. A hematologist is needed for hematological malignancies. There seem to be two mindsets in hematiology: the old school philosophy that "it's cancer but we can try to stop it", and those others who hate cancer and will do whatever it takes to stop it.

    If this requires sacrifice and travel, then so be it. After 63 cycles, the lymphoma found a way around Romidepsin - probably by the lymphoma's mutation into a different sub-type. Belinostat, Pralatrexate and trial drug Alisertib all allowed progression. At the end, it was Bendamustine, Etoposide and Carboplatin (TREC) that finally placed me in full response - my 5th salvage regimen. Dr. Shustov recently told me that there is now a better regimen that TREC against T-Cell Lymphomas, but I have no further details. 

    Am guessing that members of the T-Cell Comsortium would know. I am not privy to the membership, but if I had to guess, it would include Dr. Barbara Pro at Northwestern University in Chicago, Dr. Steven Horwitz at Memorial Sloan Kettering in New York City, Dr. Owen O'Connor at Columbia University and Dr. Lauren Pinter-Brown at UC Irvine. 

    You are only over a barrel as long as you remain with your current doctor.  

  • Evarista
    Evarista Member Posts: 336 Member
    #3
    Contacting physician

    Hi Iryn, so sorry he is struggling with this.  About contacting Dr. Shustov: a) if he is on sabbatical, someone is covering his service.  That's who you need to reach out to.  b) most medical centers have an online medical records/communication system.  If your husband has not registered for that at UW, he should do that ASAP.  We have found our system (happens to be MyChart) extremely useful in contacting my doctors.  Cannot imagine being told "no" by my doc, unless that was specifically requested.  Good luck.

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