Peripheral T-Cell Lymphoma (PTCL-NOS)

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po18guy
po18guy Member Posts: 1,487 Member
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.

Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
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    Thanks..
    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
  • jimwins
    jimwins Member Posts: 2,107
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    Thank you
    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
  • po18guy
    po18guy Member Posts: 1,487 Member
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    allmost60 said:

    Thanks..
    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

    Treatment reduced
    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
    allmost60 Member Posts: 3,178 Member
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    po18guy said:

    Treatment reduced
    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.

    Let us know..
    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
    po18guy Member Posts: 1,487 Member
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    allmost60 said:

    Let us know..
    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)

    Happy to be anywhere
    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
    jimwins Member Posts: 2,107
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    po18guy said:

    Happy to be anywhere
    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!

    Good news!
    I'm happy for you :).

    Thanks for the update.

    Hugs,

    Jim
  • allmost60
    allmost60 Member Posts: 3,178 Member
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    po18guy said:

    Happy to be anywhere
    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!

    Indeed!!
    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)
  • Fiat127
    Fiat127 Member Posts: 10
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    po18guy said:

    Happy to be anywhere
    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!

    how are you doing

    Hi po18 guy,

    I have been posting since last year and find your experiences and knowledge in this matter very informative and greatly appreciate it.

    How are you doing?

    I was diagnosed in Jan 2017 with PTCNHL NOS in the bone marrow. Stage IV.

    After 2 CHOP treatments there was no longer evidence of cancer but I still went for the full 6 cycles and various BM biosies as wel as a PET at the end.

     Al clear. However CR lasted a few months and it caame back shoeing a tumor in my L3, probably protuding from BM and lesions on my femur.

    Went through 20 sessions of Radio Therapy and before I coulld have scans to assess progress, a mass came up under clavivular bone and lesions on liver and lung.

    Have just completed 2 five day cycles of salvage ESHAP chemo and scan reveaed PR of about 40 % on average calculation as the reductio on the clavicular area was not significant but lung was almost full reduction and good in the liver.

    Waiting for ASCT hopefullly in a few weeks.

    Could you kindly share with me your views on the above.

    Thank you and hope you are continuing to respond well and in CR.

    Regards,

     

     

     

  • po18guy
    po18guy Member Posts: 1,487 Member
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    Fiat127 said:

    how are you doing

    Hi po18 guy,

    I have been posting since last year and find your experiences and knowledge in this matter very informative and greatly appreciate it.

    How are you doing?

    I was diagnosed in Jan 2017 with PTCNHL NOS in the bone marrow. Stage IV.

    After 2 CHOP treatments there was no longer evidence of cancer but I still went for the full 6 cycles and various BM biosies as wel as a PET at the end.

     Al clear. However CR lasted a few months and it caame back shoeing a tumor in my L3, probably protuding from BM and lesions on my femur.

    Went through 20 sessions of Radio Therapy and before I coulld have scans to assess progress, a mass came up under clavivular bone and lesions on liver and lung.

    Have just completed 2 five day cycles of salvage ESHAP chemo and scan reveaed PR of about 40 % on average calculation as the reductio on the clavicular area was not significant but lung was almost full reduction and good in the liver.

    Waiting for ASCT hopefullly in a few weeks.

    Could you kindly share with me your views on the above.

    Thank you and hope you are continuing to respond well and in CR.

    Regards,

     

     

     

    Sorry to hear this

    CHOP is generally considered to be ineffective on all but a single rare sub-type of the already rare T-Cell Lymphomas (ALCL/ ALK+). Nevertheless, T-Cell Lymphomas are almost expected to relapse no matter the treatment. Relapse opens the door to several newer single-agent tratments such as Romidepsin, Pralatrexate, Benlinostat and possibly Opdivo. As well there are newer combinations of older drugs (TREC and BGV) that have shown success. In my case, TREC was my 5th salvage regimen and placed me in full respnse for a transplant.

    Speaking of which, an autologous transplant is not considered to be curative in the relapse setting. I know of auto transplants that have failed in 2-4 monthis - before the patient is even fully recovered from the transplant. Auto transplants only re-boot the same immune system which allowed the lymphoma in the first place. An allogeneic (donor) transplant is more risky, has a far higher mortality rate, will probably produce graft-versus-host-disease as a consequence, but also carries a much higher likelihood of a very long-term remission.

    Tough decisions. However, if you are in the states, and are not being seen by a research hematologist at an NCI designated comprehensive cancer center, I would run for my life to such a facility. I am sad to say that many local oncologists and even hematologists are resigned to the the old "You lose quite a few patients, since it is cancer, after all" mindset. To me, this is simply not acceptable, and neither was it acceptable to my hematologist. 

  • Fiat127
    Fiat127 Member Posts: 10
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    po18guy said:

    Sorry to hear this

    CHOP is generally considered to be ineffective on all but a single rare sub-type of the already rare T-Cell Lymphomas (ALCL/ ALK+). Nevertheless, T-Cell Lymphomas are almost expected to relapse no matter the treatment. Relapse opens the door to several newer single-agent tratments such as Romidepsin, Pralatrexate, Benlinostat and possibly Opdivo. As well there are newer combinations of older drugs (TREC and BGV) that have shown success. In my case, TREC was my 5th salvage regimen and placed me in full respnse for a transplant.

    Speaking of which, an autologous transplant is not considered to be curative in the relapse setting. I know of auto transplants that have failed in 2-4 monthis - before the patient is even fully recovered from the transplant. Auto transplants only re-boot the same immune system which allowed the lymphoma in the first place. An allogeneic (donor) transplant is more risky, has a far higher mortality rate, will probably produce graft-versus-host-disease as a consequence, but also carries a much higher likelihood of a very long-term remission.

    Tough decisions. However, if you are in the states, and are not being seen by a research hematologist at an NCI designated comprehensive cancer center, I would run for my life to such a facility. I am sad to say that many local oncologists and even hematologists are resigned to the the old "You lose quite a few patients, since it is cancer, after all" mindset. To me, this is simply not acceptable, and neither was it acceptable to my hematologist. 

    Thank you again for your

    Thank you again for your reply. My Oncologist wants to plan the ASCT for after Easter and given the PR and sensitivity to the ESHAP two treatments I received a Third cycle of 5 days having concluded it last Saturday. First fewdays thereafter are not so easy but it gets better from experience.

    According to the Prof Oncologist the HD Chemo to be used in the process of the ASCT is called BEAM.

    Do you have any information about it and if any data shows higher Remission success rates.

    I live in South Africa so at this stage I am pretty stuck to plan any visit to the States.

    My Daugther is a MD and she is compiling my clinical and pathological history so hopefully i can search alternatives once I am feeling capable and allowed to travel.

    Regards

  • anantven
    anantven Member Posts: 11
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    Mini CHOP

    My father was put through Mini-CHOP. He has completed his first regimen on March 8th.

    He showed tumor lysis and increase in his kidney creatinine but both have stabilized.

    Our problem is that he is always sleeping and not eating much. We have to wake him up for food.

    Yesterday was good and he ate quite a bit but last nigth was rough. They found a blood clot in his right hand and they are giving him platelets, haemoglobin and also mild anti-clotting medication.

    His pleural effusion has come down but still exists.

    Any ideas on how to get his energy levels back quickly ? Short of placing a food tube in him ?

     

     

  • po18guy
    po18guy Member Posts: 1,487 Member
    edited March 2018 #13
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    anantven said:

    Mini CHOP

    My father was put through Mini-CHOP. He has completed his first regimen on March 8th.

    He showed tumor lysis and increase in his kidney creatinine but both have stabilized.

    Our problem is that he is always sleeping and not eating much. We have to wake him up for food.

    Yesterday was good and he ate quite a bit but last nigth was rough. They found a blood clot in his right hand and they are giving him platelets, haemoglobin and also mild anti-clotting medication.

    His pleural effusion has come down but still exists.

    Any ideas on how to get his energy levels back quickly ? Short of placing a food tube in him ?

     

     

    No easy choices

    Frankly, he is in a fight for his life. I would focus more on survival than energy levels. Post-transplant, I was constantly encouraged to get up and exercise. I told them that I would rather survive than exercise. In my case, it worked and energy slowly returned. As to eating, doctor might prescribe Marinol, a synthetic THC that stimulates appetite. I used it for about a week post-transplant when I had zero desire to eat. Once my appetite was jump-started, I discontinued the drug and ate on my own out of a sense of duty. That worked as well. In your dad's case eating will probably cause some energy return, but it might be unreasonable to expect overnight or substantial change. Our resiliency diminsihes with age and this might take longer than expected.

  • anantven
    anantven Member Posts: 11
    edited March 2018 #14
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    PO18Guy

    Thanks Po18Guy!

    Here is the latest on my dad.

    He suffered a crash two nights ago.  He is on a ventilator even though it is not for O2 levels - its primarily to ensure that his air ways remain open.

    His kidney suffered post chemo so they have him on a CRRT - continuous dialysis. They believe that given a few days, kidneys are resilient and will return.

    He is very fatigued and wore out as well.

    Can you advise me as to when his recovery from chemo will begin ? I have heard 7th to 14th day is when the recovery begins but can you please give me some range on when the recovery from the first chemo can start ?

    However, I am actively hunting for the non-toxic alternatives with your help so that as he recovers in a week or two, when he is ready for the next chemo, we can hopefully prove this first chemo experience and determine that the best option is the non-toxic alternatives.

    Thoughts ?

     

  • po18guy
    po18guy Member Posts: 1,487 Member
    edited March 2018 #15
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    I was given two months to recover...

    ...but I had just finished two months of five drugs followed by two months of three drugs in as much dosage as they dared give me. Your father's blood work will tell when his marrow is recovering. As to the rest of his body, it will respond to healthier blood as it appears. Impossible to put an accurate time frame on it, as there are numerous variables involved.  I think that you will notice a difference in a couple of weeks.

  • anantven
    anantven Member Posts: 11
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    po18guy said:

    I was given two months to recover...

    ...but I had just finished two months of five drugs followed by two months of three drugs in as much dosage as they dared give me. Your father's blood work will tell when his marrow is recovering. As to the rest of his body, it will respond to healthier blood as it appears. Impossible to put an accurate time frame on it, as there are numerous variables involved.  I think that you will notice a difference in a couple of weeks.

    Thanks po18guy

    aha.. so the blood work will tell when the marrow recovers..interesting. did not know that.

    Thank You PO18Guy

  • po18guy
    po18guy Member Posts: 1,487 Member
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    anantven said:

    Thanks po18guy

    aha.. so the blood work will tell when the marrow recovers..interesting. did not know that.

    Thank You PO18Guy

    Blood work is an indicator of

    Blood work is an indicator of recovery, as his counts should rebound as his marrow heals. However, there are other factors, including his attitude about all of this.

    As a male, his most immeidate statistical threat is his heart. Therefore, simply enjoy and be thankful for each and every moment spent with him.

  • anantven
    anantven Member Posts: 11
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    Blood work is an indicator of....

    Hey PO1Guy:

    You are correct sir. My father's blood work has recovered for the most part and is continuing to improve. His liver numbers have improved but his kidney is yet to recover. He is still on the ventilator. Even though he is fighting well and responding well, how much longer do you think we have to wait to see some recovery ?

     

     

  • po18guy
    po18guy Member Posts: 1,487 Member
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    anantven said:

    Blood work is an indicator of....

    Hey PO1Guy:

    You are correct sir. My father's blood work has recovered for the most part and is continuing to improve. His liver numbers have improved but his kidney is yet to recover. He is still on the ventilator. Even though he is fighting well and responding well, how much longer do you think we have to wait to see some recovery ?

     

     

    Patience pays off

    At 82, he is not as resilient as he was in years past. 82 for me is a pipe dream, as my dad pased at 66 and I am a few months from that age point. The future is really out of our hands and, while we hope and pray for the best, we cannot know what may come to pass. Life has forever changed and can never be what it was. For that reason, and others, I say to simply spend as much time with him as you can, enjoying every blessed minute.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,815 Member
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    anantven said:

    Blood work is an indicator of....

    Hey PO1Guy:

    You are correct sir. My father's blood work has recovered for the most part and is continuing to improve. His liver numbers have improved but his kidney is yet to recover. He is still on the ventilator. Even though he is fighting well and responding well, how much longer do you think we have to wait to see some recovery ?

     

     

    Be aware...

    anantven,

    I was following yor discussion here. He has numerous quite serious comorbities that render his prognosis poorer that would otherwise be the case. Chemo for an 82 year old, even without those comorbities, would be a challange.

    When I was 30 I was crushed when a car rolled over me (flail chest and pneumothorax), and was on a ventilator myself for 16 days. 

    I learned then that while there are no absolute timeframes, 14 days is regarded as "a long time" on a vent. Chest muscles begin to atrophy, and it is hard to regain the ability to breath spontaneously.  I had severe shortness of breath for many months, and was too weak to even speak more than a few words for about two months, so he may have a tough time.

    Overall, his situation sounds dire. I would say that Po's recommendations are well-made,

    max

  • Donitaj61
    Donitaj61 Member Posts: 1
    edited July 2018 #21
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    Peripheral T-Cell Lymphoma

    Good Morning All-

    My husband was diagnosed this past February with T-cell lymphoma. After 5 treatments of CHOEP therapy his cancer went refractory. Thanks to his oncologist at Vassar, he's been referred to Columbia for a clinical trial that uses Pralatrexate and Romidepsin together. It's had a good success rate so far, but of course no guarantee.

    He has had numerous complications along the way, hospital stays for a stent, fevers from undetermined sources, and high calcium.

    i, as his caregiver, understand the emotions and anger that he's experiencing but it's difficult for our 20 year old twins to cope with.

    Thanks all, just for listening.

    Donitaj61