Simon's Tale - Ibrutinib for Relapsed WM

Published: 28-Jan-2018

Ibrutinib success after chemotherapy fails

Simon’s Tale: Ibrutinib for resistant WM
I am a twice-relapsed Waldenstroms patient currently on Ibrutininb and in remission. I am currently 58 and was 52 at diagnosis in October 2011.

First Treatment -RCVP then Velcade
When diagnosed I was symptomatic with anaemia and hyperviscosity syndrome. I was immediately put on RCVP but found intolerant of Rituximab due to two hospital admissions with >40C fevers and SVT. I also showed no response to this chemo so commenced Velcade in March 2012. At this time I had given up employment due to the amount of time spent in hospital and on-going twice-weekly appointments. I completed my course of Velcade in Oct 2012 and enjoyed partial remission although my paraprotein started rising again after only a couple of months.

Preparation for a Stem Cell Transplant
In Feb14 I started ESHAP conditioning, with a view to a stem cell transplant, but after three courses the disease in my marrow had hardly reduced so it was decided to try Rituximab once more. Again I suffered SVT (abnormally high heart rate) and fevers with temps >40C. This resulted in a three-week hospital stay followed by weekly plasmaphersis due to paraprotein spike and cardio ablation for SVTs. I started on Velcade again in Feb15 but this had to be stopped two months later due to increasing peripheral neuropathy. At this point I didn’t appear to have any promising options having twice failed to respond to
cytotoxic chemotherapy and being completely intolerant of Rituximab.

Ibrutinib treatment
In June 2015 Dr D’Sa at UCLH made a submission to my medical insurers demonstrating that Ibrutinib offered my only real chance of remission and they agreed to supply on a three monthly review basis. I started the drug in July 2015. It simply comprises three capsules taken with a large glass of water each morning. My paraprotein level immediately started to fall and was down to an insignificant value within three months, where they have remained. In addition I am no longer anaemic – for the first time in five years. I do have the MYD88 gene mutation and no evidence of CXCR4 mutations which, from research results, are deemed to be conditions for best response to Ibrutinib. I continue to have low IgA and IgG but otherwise blood results are good. We are yet to determine how the disease in the bone marrow is responding.