• anyone have an experince with Romidepsin? Had a series of CVS the lymphoma went away and in a few short months it was back. Starting Romidepsin tomorrow.

    Asked by Spideyman on Tuesday, March 27, 2012

    anyone have an experince with Romidepsin? Had a series of CVS the lymphoma went away and in a few short months it was back. Starting Romidepsin tomorrow.

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    8 Answers from the Community

    8 answers
    • po18guy's Avatar
      po18guy

      Glad you asked. I was in the phase II clinical trial of Romidepsin, being started on it in March, 2009. Once the trial closed, I remained in a long-term study of it. I have just started my fourth year on 'Romi' with my last infusion being this past Monday, March 26th.

      Main effect: It has kept my aggressive non-Hodgkin's Peripheral T-Cell Lymphoma (NOS) in hiding for nearly three years. While the objective (overall) response rate to Romidepsin is 25%, 15% of patients received CR/CRu for a median response time of 17 months. There are four patients who are the longest-term responders to the drug, of which I am the second longest in response. I am now in my 37th month of response to the drug, and in my 34th or 35th month of complete response.

      Side effects: These are anecdotal, and may or may not apply to you. Initially, I experienced some nausea, which was well controlled with Zofran. In three years, I have vomited exactly once, post treatment. There may be some intestinal cramps the day of treatment or the day following, and this occasionally manifests itself in constipation or diarrhea. More frequently, I have experienced indigestion, and use OTC Omeprazole to control that. There has also been some fatigue, but that has been moderate, and not at all comparable to that which I experienced while in chemo.

      After about one year of use, I voluntarily discontinued the Zofran, due to its side effects. I experienced no notable nausea after that, and have since resorted to the use of Zofran on only one occasion after my treatments were dropped to a single monthly infusion. I have not experienced any of the serious side effects, such as altered heart rhythm or infections. I have occasional shortness of breath, but it is more noticeable than limiting in nature.

      The drug is tough on your blood numbers, and for that reason it is usually given on day 1, day 8 and day 15 of a 28 day cycle. The break after day 15 allows the patient's blood numbers to rebound. It seems to deplete the level of potassium in the blood, so an increased intake via dietary adjustment is advised. The most notable effect in my case has been anorexia, normally beginning one day post-treatment and tapering off until it is mostly resolved about 4-5 days later.

      A most unusual effect that I experience is that most foods will be absolutely unappealing post-treatment. However, if for some reason, a certain food seems appealing, I would need to consume it at that time. Earlier, or later, it might not be appealing. Protein drinks or milk shakes have been the most palatable forms of nutrition for 2-3 days post-treatment. If you have ever practiced fasting, this time period will not be much of a problem.

      The blessing of the drug in my case has been to completely control a rare and aggressive cancer for which there is no standard treatment. It had defeated eight different chemotherapy drugs when it relapsed immediately post-treatment. While Romidepsin is not a perfect drug, in my case it has been the perfect solution. I say this because I was not expected to live beyond mid-2009 had the Romidepsin not been effective.

      As well, I am not a candidate for an allogenic stem-cell transplant, as there is no available donor. My own stem cells are in cryogenic storage, but an autologous stem-cell transplant is not considered to be a cure for this T-cell lymphoma. Recent studies have indicated that those who respond long-term to novel therapies such as Romidepsin receive the benefits of a transplant without the associated risks.

      about 5 years ago
    • Spideyman's Avatar
      Spideyman

      Thank you for the great response...I am really glad to hear you have had such great sucess with the Romidepsin and I sincerely hope it continues...you have provided me with great information....Do you mind if i ask you how old you are and if it was in the bone marrow? I am actually blogging for my mother she is 74 and has angeoblastic T cell lymphoma in the bone marrow as well. CVS help put her in remission for only a few months and now its back. Treatment one was yesterday fingers crossed!

      about 5 years ago
    • po18guy's Avatar
      po18guy

      I was 56 when I started treatment. I had bone marrow involvement before chemo, but we do not know if it was there at the time of relapse. I would say that it probably was, since the relapse was immediate. However, it may not have been an actual relapse, but rather a case of refractory disease, which is not at all unusual in T-cell lymphomas. AITL is a close cousin of the PTCL-NOS that I had. If the Romidepsin is not effective, there is another HDAC inhibitor (Vorinostat aka Zolinza) that might be tried, or a relatively new chemo agent (Praltrexate aka Folotyn) that might also be considered.

      about 5 years ago
    • po18guy's Avatar
      po18guy

      I am not familiar with CVS. Do you know what that consists of?

      about 5 years ago
    • Spideyman's Avatar
      Spideyman

      Sorry I think it was CVP. it is bascially CHOP without the H due to her age. Praltrexate was an option thought we went with the Romidepsin being we were told the side effects are much less servere. the difference is Romidepsin is a 4 hour drip and the Praltrexate infuses over a few mintues...you have to weigh it all out. Do you remember how long it took till the Chemo started to work? i was wondering how many rounds till we know if it is helping.....

      about 5 years ago
    • po18guy's Avatar
      po18guy

      I am guessing that your mom has a T-cell lymphoma? The results should be visible quite soon if it is effective against your mother's cancer. There should be plainly observable activity at the first scan after treatment begins. If she has bulky disease, she may notice the lessening of pressure on internal organs from tumor reduction. In my case, I was only at stage 1 when the relapse was caught, so there were no symptoms at all. Frequent scanning, especially with the aggressive lymphomas, is highly recommended. Fortunately, Romidepsin does not ruin one's health in case it is not effective, like standard chemotherapy regimens do. This gives invaluable time to seek an alternative therapy. There is a cousin to it, Vorinostat (aka Zolinza), which is another HDAC inhibitor, that might also be tried if the Romidepsin is not effective. Additionally, there is also a single agent chemotherapy drug aimed at T-cell lymphomas: Pralatrexate (aka Folotyn). There are more options now than ever, as long as one's health remains relatively stable.

      about 5 years ago
    • Spideyman's Avatar
      Spideyman

      My mother has angioblastic t cell lymphoma stage IV. I have never heard of Vorinostat (aka Zolinza). The doctors talked of 2 treatments to start Pralatrexate and Romidepsin. We went with the Rompidepsin being we were told the side effects are much less servere-hoping it works and we do not need to look furthur. My mother is feeling pretty ill right now so I suppose we will know based on how she is feeling if it is working or not. Thanks for all the great info I will keep you posted and keep me posted as well....Feel good!

      about 5 years ago
    • po18guy's Avatar
      po18guy

      With its conditional FDA approval, Romidepsin will now be tried in combination with other, standard drugs. It may become part of a future standard combo, as CHOP and others are today. May it be just what your mom needs.

      Jim

      about 5 years ago

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