Living abroad, you have the benefit of living in proximity to many pharmaceutical houses like Astra Zenica. It might be worth your while to contact them directly and ask their research department if they are researching any maintenance therapies that you can participate in. Even if you don't fit the inclusion/exclusion criteria, they might allow you to participate off label in a preventative trial. Also, check out www.centerwatch.com. This website does list trials worldwide. Best of luck to you, Carm RN.
Nodal Marginal Zone B-Cell Lymphoma Questions
Clinical trials for relapsed DLBCL (in UK)
Asked by nicegal on Thursday, April 18, 2013
Clinical trials for relapsed DLBCL (in UK)
After R-CHOP x 6 DLBCL returned within ten months. Statistically it is likely to reappear within about half that time. I am currently in remission after 3 cycles of R-DHAP (last treatment end of Jan 13). Not suitable for auto or allo stem cell transplant, due to age and co-morbidities. I also have indolent Marginal Zone NHL (incurable) and several autoimmune diseases. I am 66.
I have checked out some trials but they seem to require that the disease is active again. My oncologist is still looking for me but says he doesn't know of any maintenance drug that might extend my remission.
I was thrilled to read the account by jhale17 who has successfully battled DLBCL four times, his story has brought me hope. Thanks jh!
Is anyone else in my situation?
3 Answers from the Community
This is something I ran across in CURE Magazine’s current issue. Ibrutinib was mentioned by DR Thomas P. Miller, MD, of UA Cancer Center during the recent Lymphoma Workshop in Scottsdale, AZ USA. It is a targeted drug in tablet form providing good outcomes. DR Miller said it is in Stage 2 clinical trials. You should see if it appropriate for your situation on www.clinicaltrials.gov. This write-up mentions NHL.
DR Miller is Professor of Medicine Director, Lymphoma Program, Department of Medicine, University of Arizona Cancer Center
Good luck, hang in there. I am holding good thoughts for you.
Exert from CURE Magazine
“Breakthrough” Therapy for Lymphoma and CLL
By Richard C. Frank, MD
“Everyone always talks about when you have cancer, well if you live long enough there might be a miracle drug that comes out that’s going to go save you. In this instance, I had something that really came along and did the trick.” These are the words of a patient with advanced chronic lymphocytic leukemia treated with the promising new medicine for blood cancers, called Ibrutinib.
Ibrutinib is a promising new medicine for cancers derived from the B-lymphocyte. These include chronic lymphocytic leukemia (CLL) and two types of non-Hodgkin’s lymphoma: mantle cell lymphoma (MCL) and Waldenstrom’s macroglobulinemia (WM). All three of these cancers are very difficult to cure.
Ibrutinib is a “targeted therapy,” and therefore, has few of the unwanted side effects of chemotherapy. Early phase clinical trials with Ibrutinib for the treatment of advanced cases of CLL and NHL have been hailed as “remarkable” by many oncologists. As a result, the US Food and Drug Administration recently granted “Breakthrough Therapy Designation” for Ibrutinib to treat MCL and WM. This designation should help speed FDA approval of Ibrutinib once the clinical studies with the drug are completed (and if it continues to live up to its promise).
Although not given the Breakthrough designation for CLL, the drug’s activity for CLL has also been remarkable. In early phase clinical testing, over 80% of patients with CLL or SLL (small lymphocytic lymphoma) whose disease has grown despite all available treatments have experienced major disease regression with few side effects. Furthermore the cancer control is lasting years in most cases.
A pivotal clinical trial comparing Ibrutinib with the antibody therapy Ofatumumab (Arzerra) is ongoing across the nation and will ultimately determine if Ibrutinib becomes approved for the treatment of advanced CLL. Other CLL trials are testing the use of Ibrutinib as the first treatment for the disease, with or without chemotherapy.
Ibrutinib appears to be an extremely promising new therapy for NHL and CLL, potentially affecting millions of patients around the world. Any patient with CLL or lymphoma, especially MCL and WM should inquire with their oncologists about clinical trials with Ibrutinb that may be accessible to them. Visit www.clinicaltrials.gov to find cancer clinical trials.
Posted by: Richard C. Frank, MD at 7:57 am - end of article
Thank you both for your responses.
Carm, I did look up Astro Zenica but they seem to be in financial straits, plus facing litigation re one of their trial drugs causing diabetes. But it is a very good idea to research other companies in the UK, the thought had not crossed my mind. I had already been on the main clinical trials site and extracted about eight possible trials possibly suitable for me but my doctor says I don't fill the requirements for any of them. The centre watch site did not even bring those trials up for me, unless I was doing something wrong.
Jhale, ibrutinib is mentioned in conjunction with relapsed DLBCL though the clinical trials seem to be centred around mantle cell, WM and CLL. But I will get my oncologist to look into it. He has mentioned Gemcitabine or mini-beam.
At present he still does not think there are any suitable maintenance regimes, but thinks it's a matter of waiting for it to return before I would be considered for any trial. Your DLBCL returned after several years each time, my quick relapse puts me at more risk of a further recurrence, statistically likely within half the length of the first relapse, which puts it any time from June. I hope you don't mind but I told my onc about you and he was very interested in your experiences.
I hope you are still continuing to progress and that the side and after effects of the chemo are not too distressing. Your survival has been an inspiration to me.