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Peripheral T-Cell Lymphoma (PTCL-NOS)

po18guy
Posts: 245
Joined: Nov 2011

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.

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Thank you for sharing your story and the information on treatment. This will be a great help for those with PTCL-NOS. I read your about me page and hope others will also to see that there is ALWAYS hope. Best wishes for continued remission....Sue
(FNHL-stage3-grade2-typeA-diagnosed June 2010-stable) age 61

po18guy
Posts: 245
Joined: Nov 2011

Thank you, Sue! As of last Monday, I have been re-consented for single monthly treatments. There are just a few of us long-termers left in the study, and we are essentially experimenting with dose frequency reductions. The re-write of the protocol has been in the works for about one year, but has finally arrived. For those whose scans have remained clear, it is thought that a reduction in the frequency of the dosage is appropriate. I freely admit that I am just a tiny bit nervous about this, although I welcome the reduction in side-effects, even though they are moderate and do not appear cumulative.

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Please come back and share how the change in the protocol works for you. I hope you continue to do well and wish you all the best. Less side effects will be nice, especially with the holidays upon us. Keeping good positive thoughts for you.
Sue (FNHL-2-3A-6/10)

po18guy
Posts: 245
Joined: Nov 2011

My oncology nurse refers to me as the poster boy for Romidepsin (Istodax) at the treatment center. I am very grateful to be responding to the drug after 33 months, as median response time is 13 months. This is a blessing, since there is no marrow donor in the world registry, and I have no family left. I do have my own cells in storage, though. On a 28 day cycle, after one year of day 1/day 8/day 15 treatment, then a year and a half of day 1/day 15 treatment, it is a somewhat strange feeling to have 3 weeks to recover post-treatment. The drug is hard on potassium and magnesium levels in the blood, but it's harder on the cancer. For someone who essentially began on salvage therapy, life is good, indeed!

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

I'm happy for you :).

Thanks for the update.

Hugs,

Jim

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Yes..life is good indeed and you definetely have much to be grateful for. Enjoy your 3 weeks of recovery! Getting a break from it all will do your body good. Thanks so much for sharing your story..very inspiring. Best wishes for continued success...Sue
(FNHL-2-3A-6/10)

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Thanks for your post. Please feel free to
continue visiting here and "join the gang".
We can always use positive news and support!

Hugs,

Jim

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