PTCL NOS

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

Is there anyone currently being treated for Peripheral T Cell Lymphoma NOS?

Comments

  • po18guy
    po18guy Member Posts: 1,509 Member
    #2
    Extremely rare type of lymphoma

    I have been treated for it, but not currently. Where are you located (continent/country/state)?

  • Blaundier
    Blaundier Member Posts: 6 Member
    edited November 2017 #3
    PTCL NOS

    My 64-year-old husband was diagnosed with PTCL NOS in August 2017.  He has had three chemo treatments with CHOP-E and just today, we went into Dana Farber in Boston for his 4th treatment.  Prior to the 4th treatment, he had a petscan to see if the chemo was being effective.  While it had eliminated a large group of swollen lymph nodes in his abdomen, it had not been effective against other lymph nodes in his neck, chest, and pelvis.  The doctor decided to stop the chemo and gave us the option of proceeding with Romidepsin alone, or participating in a drug trial that involved using Duvelisib first (which is a trial drug), followed by Romidepsin.  I have seen your success with Romidepsin, po18guy, and have also read very favorable information on the internet regarding success rates with Romidepsin.  What advantage would it serve us to participate in the Duvelisib trial instead of going straight to the Romidepsin?  I would be interested in your thoughts on the subject.  Thanks.

     

  • po18guy
    po18guy Member Posts: 1,509 Member
    #4
    Blaundier said:

    PTCL NOS

    My 64-year-old husband was diagnosed with PTCL NOS in August 2017.  He has had three chemo treatments with CHOP-E and just today, we went into Dana Farber in Boston for his 4th treatment.  Prior to the 4th treatment, he had a petscan to see if the chemo was being effective.  While it had eliminated a large group of swollen lymph nodes in his abdomen, it had not been effective against other lymph nodes in his neck, chest, and pelvis.  The doctor decided to stop the chemo and gave us the option of proceeding with Romidepsin alone, or participating in a drug trial that involved using Duvelisib first (which is a trial drug), followed by Romidepsin.  I have seen your success with Romidepsin, po18guy, and have also read very favorable information on the internet regarding success rates with Romidepsin.  What advantage would it serve us to participate in the Duvelisib trial instead of going straight to the Romidepsin?  I would be interested in your thoughts on the subject.  Thanks.

     

    A tough call

    It really depends on how deeply the pathology lab has investigated the clone cell at work in your husband. I hope this is not the case, but the inconsistent response "may" indicate that the lymphoma has mutated into two sub-types, as happened to me. If response is not as expected, it could be time to biopsy another node. Refractory disease opens the door to more alternatives. Have they mentioned the single agents Pralatrexate of Belinostat? Both are known to have a certain effectiveness against T-Cells.

    As a salvage regimen, I received a miraculous response from Bendamustine, Etoposide and Carboplatin - three of the four drugs in the recently developed regimen called TREC. It normally also contains Rituxan, the "R", but that has no effect against T-Cells. Further out into research land, there is also a new regimen called BGV, which is Bendamustine, Gemcitabine and Navelbine. However, such research-based regimens are often frightening or intimidating to hematologists. 

    As to trials, they are crucial to the furthering of medical science. There is a chance that the Duvelisib conditions the tumor cells, making them more susceptible to the Romidepsin. There is also the chance that it will not be effective. As to trials, they are the first recommendation in systemic T-Cell Lymphomas. You can drop out of the trial and switch to Romidepsin as a single agent, or pursue another avenue - it largely depends on your hematologist.

    Here is a link to the better-known centers which have T-Cell specialists. I cannot recommend visiting one of them highly enough.

  • Blaundier
    Blaundier Member Posts: 6 Member
    edited November 2017 #5
    T-Cell Specialist

    My husband is actually under the care of one of the T-Cell specialists on the link you provided, Dr. Eric Jacobsen at Dana Farber in Boston.  He is requiring both a lymph node biopsy and a bone marrow biopsy before we continue with either of the recommended treatments.  Those biopsies will probably be scheduled for next week.  So I would guess they are going to do the pathology homework.   My husband also has a recently discovered genetic condition, Alpha 1 Antitrypsin Deficiency ( a protein that is manufactured in the liver and provides the lungs with their elasticity), which is the underlying cause of just about all cases of emphysema and COPD.  There are various phenotypes of the deficiency, and most will cause no problems unless the person is a smoker, which then triggers COPD development.  P (my husband) has never been a smoker, but unfortunately, he has the worst possible phenotype of the disease, and after being treated with external beam radiation for prostate cancer last year, lung problems started occurring. The Duvelisib can sometimes cause respiratory infections, so the doctor said it may be possible that P won't qualify for the trial anyway, but he will let us know in a day or two.

    As yet, he hasn't mentioned any of the other treatments you have mentioned, although etoposide has been a part of the chemotherapy that P has already received.  

    Your story is truly amazing, and I so admire how you have dealt with all that you have been through.  That you have taken the time to document in detail all the various things that have happened to you on your journey, the drugs you have tried, the results you have gotten, the side effects you have developed -- I'm sure it was no easy task, particularly since it obviously is a journey that has still not provided a nice happy ending where you get to say, "It's over, I'm cured!" It has not been easy to find survivors of this disease on the internet, and it is infinitely generous of you to share your time and knowledge with others.  Thank you very much.

  • po18guy
    po18guy Member Posts: 1,509 Member
    edited November 2017 #6
    You are very kind

    There is always a complication of some sort. Fortunately, the possibility of a side effect is often not realized. A top notch doctor at Dana Farber probably knows about the alternative regimens and single agents, and may already have considered them. Worth asking about. As to me, I am living the life that was intended for me. 'Cure" is neither in my vocabulary, nor in my expectations. I am now attempting to survive the "cure", and I consider it to be the 'new cancer.' But, challenges make champions, and I am just a beginner.

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