Hi. Although I'm in Australia the treatments used and paid for by our governments are similar. For my initial treatment (aged 52) I had the standard Nordic 2 and some maintenance Rituximab 2017-8. I had very few side effects and seemed to respond well. Early this year (2021) I developed a lump on my neck. Small at first, but ended up the size of half a mandarin. A few tests showed the MCL is back.
A standard treatment for a relapse is Ibrutinib which would (on average) give you about 4 years before more issues crop up. However my haematologist in Tasmania found there is a trial in Melbourne of a very new T-Cell treatment from the US. I was the last of 20 patients to get on the trial (very lucky). It's a combination of Ibrutinib and genetically engineered T-Cells (Tisagenlecleucel). Very high tech and very expensive (like US$480,000 plus the cost of the Ibrutinib!). This is the brave new world of cancer treatment. Brings up all kinds of ethical questions like just how much should you spend on one person?
https://www.clinicaltrials.gov/ct2/show/NCT04234061
https://www.nps.org.au/australian-prescriber/articles/tisagenlecleucel-for-b-cell-cancers
'This product is prepared using the patient’s own T cells. These are harvested from blood, then, in the laboratory, a transgene is introduced which encodes a protein called chimeric antigen receptor (CAR). This receptor is expressed on the surface of the T cells and allows them to bind to the CD19 antigen on B cells and precursor B cells. This binding activates inflammatory cytokines and destroys the CD19-positive cells.'
