Katie

Katie talks about people’s reaction to a Waldenström’s macroglobulinaemia diagnosis and shares her experience of a clinical trial.

Katie

In 2010 I was diagnosed with breast cancer. I had so many cards and calls wishing me well with my treatment, my home looked like a florist.

More recently I had a hysterectomy, and my female friends, family and colleagues gave me lots of support. But people don’t seem to know how to react to my diagnosis of Waldenström’s macroglobulinaemia. I wonder why that is? Is it because it is such a complicated disease to understand? Is it because I wasn’t going to receive treatment straight away, so people didn’t understand how serious this was. Was it because I looked no different? The reality for me was that I considered this to be really serious.

My lymphoma story really began after my hysterectomy in 2019. The operation went smoothly, and I was recovering well. After the operation, I had to inject myself with heparin, a blood thinning drug, to avoid blood clots. I noticed a strange patch of skin which turned very dark. I happened to have a nurse friend visiting and shared my concerns and showed her what I was talking about. She said she’d never seen anything like it before and urged me to go to my GP.

The GP referred me to a dermatologist who initially thought this strange skin colouring was due to an allergic reaction, possibly to the heparin. However, several tests were organised to look into this and, through a process of elimination, I was eventually diagnosed with blood cancer summer 2019.

I was diagnosed with Waldenström’s macroglobulinaemia (WM) and was put on active monitoring, or 'watch and wait', with a review planned every 3 months. I thought this would last for months and hopefully years, but unfortunately it became evident fairly quickly that I would need to start treatment.

My Consultant spoke to me about a randomised clinical trial called the RAINBOW trial for people who hadn’t had any prior treatment. RAINBOW is a phase 2/3 trial comparing ibrutinib plus rituximab with the standard treatment of dexamethasone, rituximab and cyclophosphamide.

It was at this point that lockdown happened due to COVID-19, and the trial was suspended. I had a  decision to make on whether to start standard treatment or to wait for the trial to restart. My doctor felt it was safe for me to hold back treatment for the time being and even though I thought it may not happen, I was keen to wait and see.

 
As someone currently undergoing treatment as part of a clinical trial, I would recommend to anybody to consider it as an option if it is a possibility for you.
Katie

In October I was notified that the trial had restarted. I had several discussions with my clinical team and was given all the details about the clinical trial. Although the information looked daunting, I am used to technical information in my job so I didn’t find it intimidating or scary. However, I can imagine for many people the paperwork around clinical trials might seem that way. My thoughts were that I would get more monitoring and it felt like something important to do to move treatment forward.

The trial was randomised so I couldn't choose which treatment I had and neither could my doctor. I knew the options were the chemotherapy I would have had as a matter of course or a new immunotherapy drug (ibrutinib plus rituximab). I was actually quite pleased when I heard I had been placed on the immunotherapy arm of the trial and so far indications show that the WM is responding well.

As someone currently undergoing treatment as part of a clinical trial, I would recommend to anybody to consider it as an option if it is a possibility for you.

The research nurses on my trial are fantastic and I notice extra tests and checks. For example I have a chest and lung function test prior to treatment as part of the clinical trial protocol and also a one-to-one with the pharmacist to discuss the medications in detail.  I really feel part of something.

3 March 2021