In 2010, and at the age of 44, I was diagnosed with Waldenström’s macroglobulinaemia, a low-grade non-Hodgkin lymphoma.
I had worked for the NHS for 27 years but had noticed I was getting really tired. I put it down to the stress of the job, so decided it was time to leave that role. But the tiredness continued and in addition I started to develop stomach pains. I went to see my GP who referred me for tests. I was fortunate that my lymphoma diagnosis of Waldenström’s macroglobulinaemia (WM) was picked up straightaway.
My father-in-law had had low-grade non-Hodgkin lymphoma and tended to need treatment every 2 years or so. I thought the same scenario would be the case for me too.
After diagnosis I was put on active monitoring (watch and wait) which lasted for 6 years. In 2016, after developing symptoms, it was decided that I should start chemotherapy and was treated with RCP (rituximab with cyclophosphamide and the steroid prednisolone).
Unfortunately the RCP only managed to give me a partial remission until May 2019 and I then started treatment with ibrutinib, which is a BTK inhibitor (oral medications that block Bruton's tyrosine kinase, a protein crucial for the survival and proliferation of B-cell malignancies). I took this targeted drug daily as a tablet and had a really good response; it was keeping my WM under control well.
In March 2020, at the beginning of the pandemic, I contracted COVID-19, which was a really frightening time. I ended up in hospital for 4 weeks and had blood clots in my lungs which needed to be treated with anticoagulants. Because of the COVID, I had to stop the ibrutinib as it was an immunosuppressant. It was a fine balance for the medical team to decide when to start me back on ibrutinib while I was still on the anticoagulant for the blood clot.
The ibrutinib continued to work well for me until 2021 when I got some joint pain which they thought was related to the ibrutinib.
My treating team talked to me about a clinical drug trial called the LOXO-305 trial to evaluate the safety and efficacy of pirtobrutinib. The ibrutinib I had previously been treated with is a BTK inhibitor and pirtobrutinib is a second generation BTK inhibitor. The trial was designed to compare the drug’s efficacy and safety, including whether people experienced fewer side effects.
The trial has now finished and while it wasn’t approved for use in WM, it is available for CLL/SLL and mantle cell lymphoma. Having started on the drug in 2021, I am continuing to take it as it is still working and I am therefore still eligible to receive it.
I have just celebrated my 60th birthday which feels like a real milestone. When I was first diagnosed with WM, I couldn’t imagine that 16 years later I would feel so well.
I would certainly urge anyone who is interested in taking part in a clinical trial to talk to their medical team about it. They can then explain more about what is available, what is involved and whether you may be eligible. Lymphoma Action have Lymphoma TrialsLink, which is a database of lymphoma-specific trials, which may be of interest. In addition, Blood Cancer UK and Cancer Research UK provide good information on this subject.
You can also watch Sandra talk about her experience of lymphoma in our lived experience film, Having lymphoma: I want you to know.