Nov 08, 2011 - 11:43 pm
I have only recently joined, but can offer hope for those who are diagnosed with this rare and aggressive cancer. The prognosis is consistently given as poor, although this is changing. In mid-2008, I was diagnosed with Peripheral T-Cell Lymphoma - NOS. This cancer is rare, so there exists no standardized therapy to use against it. It is aggressive, and so time is of the essence in combating it. CHOP is often mentioned, or even administered, but PTCL, in the words of my oncologist, "laughs at it". But, there is nothing else to offer, is there?
Yes, there is, but it requires an oncologist with the confidence of experience in treating it. At that time, doctor decided on two different courses of aggressive chemotherapy, given back to back over four months. The first course was CHOEP (cyclophosphamide, doxorubicin, etoposide, vincristine and prednisone), followed by GVD (Gemcitabine, vinorelbine, and pegylated liposomal doxorubicin). This course of therapy may not be appropriate for any other individual, since this cancer's immunophenotype can vary widely within its rather broad ("NOS") category.
In any event, my disease responded to the combination of eight anti-cancer drugs. I was blessed with what appeared to be a complete response after four months. I do not maintain that this was an easy course of therapy, but that it was a necessary one. It was discontinued at the end due to cumulative toxicity. A scan two months later showed that the cancer had come right back. At that time, I was offered the "salvage therapy" of in-patient ICE (ifosfamide, carboplatin and etoposide). This offered only limited effectiveness, since I had already received etoposide, one of ICE's components, as part of the primary therapy.
Providentially, at that time, two clinical trials were offered to me. One did not appear to be suited to my case, but the other seemed to offer promise. It was for a biological (non-chemotherapy) drug called Romidepsin (aka Istodax, Depsipeptide, FK228). It offered a high-30% chance of response. I entered into the trial and subsequent scans revealed that the disease responded well to it. The median time of response to the drug was 13 months. After that, half of the patients relapsed.
Well, to shorten this, it is now 33 months after I began treatment and I remain cancer-free. Doctor states that the prognosis improves with the passage of time. Quite a change from the "very poor" prognosis I received in February, 2009 after the immediate relapse. Romidepsin is now FDA approved for both Cutaneous T-Cell lymphoma (CTCL) and PTCL. Additionally, there is a cousin of Romidepsin (Belinostat) available, as well as a new chemotherapy drug, Folotyn (Pralatrexate).
None of these is a guarantee, and all have risks, but hope is on the rise.