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Thread: Romidepsin

  1. #1
    Regular User
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    Jun 2012
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    Romidepsin

    Reached a milestone of sort. Just had my 60th round of treatment. 5 years. Not sure if itís a record, but a milestone nonetheless.
    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
    58th round July 2018
    Latest PET scan - NED

  2. #2
    Super Moderator Top User po18guy's Avatar
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    4 more cycles and you will be tied for the silver! A fellow in France, one of Dr. Bertrand Coiffier's patients, still holds the #1 spot. I am going to ask about Romi for some skin issues that I have related to GvHD.

    Great to hear from you. Good that you are doing well.

    And, may it never happen, but look at the options you now have that did not exist before.

  3. #3
    Regular User
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    Thanks. I’ve been doing once a month for almost a year. Doc floated the idea of stopping altogether. Is there any data to support either way?
    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
    58th round July 2018
    Latest PET scan - NED

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Siopping is somewhat of a gamble, as the Romi seems to suppress the lymphoma. You very well could be done with lymphoma. Yet, the possibility exists that a dormant/sleeper/lymphoma stem cell may be hiding somewhere. But this is only conjecture based on the behavior of relapsed disease. There may be the risk that Romi, which is involved in DNA synthesis, might actually cause a mutation. Indeed, that may have been what occurred in my case as it had been 4 1/2 years (so close to that magic 5-year mark!) when I both relapsed and mutated into two sub-types.

    Even though there has been no sign of the lymphoma in your case, it is prudent to have several plans on the back burner in case of a relapse. There are some new drugs (Opdivo, Poteligeo come to mind) that can be used, as well as new combos of existing drugs. T-Cell is not a huge profit maker, so development seems to be slowing a bit, after a surge over the past decade. Still, there are now more options that ever.

    Ultimately, there is no way of knowing without making the leap.

 

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