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.