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Thread: Father diagnosed with AITL

  1. #21
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    Thanks Deb, thatís exactly what Iíve learnt from talking to you guys and itís really helped me.

    Your brothers story really gives me hope!

    X

  2. #22
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    Romidepsin post first relapse

    Hi All,

    I was wondering if anyone could tell me why Romidepsin is only given after relapse and not at
    Diagnosis? If first line treatment for Periperhal T Cell Lymphoma almost always fails, then why isnít it being used before?

    I also wondered if anyone could tell me why it hasnít been authorised in the UK yet and only in America? Is it because of the cost?

    Many thanks,
    Lillie

  3. #23
    Super Moderator Top User po18guy's Avatar
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    Lillie, I moved your thread here, as it was under leukemia, which(fortunately) is a rathert slow forum. Anyway, even though there is no standard therapy fo nearly all T-Cell Lymphomas, the FDA in America demands that older drug regimens be tried first. An antiquated line of reasoning to be sure, but that is slowly changing. I believe that it is another case of B-Cell Lymphoma thought being (mis)applied to T-Cell therapy. It may even trace back to before T-Lymphocytes were recognised as a separate entity.

    I see that same reasoning applied to many of the new drugs. One would tihnk that the new drug would now be first in line with the older treatment as salvage therapy, but not so. About three weeks ago, Adcetris was approved for first line use, but only in combination with other, older drugs. However, this is a sea change in lymphoma therapy, as no such modification has been made in perhaps 40-odd years.

    I do believe that Romidepsin is approved now in Canada, as I spoke at some length with Lymphoma Canada regarding that issue in 2012, IIRC.

  4. #24
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    Guys,
    Does anyone know how long it takes for Romidepsin to kick in? Dad started his first batch a couple of days ago but is still having these fevers/chills!
    What causes these chills? They are terrible!

  5. #25
    Super Moderator Top User po18guy's Avatar
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    The chills are possibly an immune response by his body to the tumor cells, although they are one of the known side effects of the drug. I did not have chills, but they are a known side effect.

  6. #26
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    Quote Originally Posted by LZP1991 View Post
    Guys,
    Does anyone know how long it takes for Romidepsin to kick in? Dad started his first batch a couple of days ago but is still having these fevers/chills!
    What causes these chills? They are terrible!
    Not quite the same as fever with chills, but for me, I always have chills on the second day after treatment.
    Dx April 2012. Stage 4 AITL with B Cell involvement
    5 Rounds of EPOCH
    AUTO SCT November 2012
    Relapse confirmed Oct 2013
    1st round of Romidepsin Oct 2013
    68th round May 2019
    Latest PET scan - NED

 

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