Nicky’s story

I’m Nicky and I’m from Australia. I’m 42 years old, married, with two amazing kids. I’m studying to be a Clinical Nutritionist with the plan to help FL Patients learn to eat well and live well.

I was diagnosed in 2014 with Stage 4, Grade 2 FL. I had been waiting more than two weeks for the results of a fine needle aspiration and figured it wasn’t urgent so I must just have glandular fever or something similar. I got a phone call from my Haematologist who told me I definitely had a lymphatic disorder.

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My response was “Is that cancer?” And he said “Yes”. That was a punch-in-the-face moment for me. I immediately went into shock.

My youngest child was less than a year old and I noticed about 30 lumps on my neck. I didn’t think too much of them but got checked out. The GP did a blood test, and I didn’t hear anything back as it didn’t show any abnormalities. I then noticed a lump in my groin and was referred for testing where they diagnosed NHL but didn’t know what type. I was sent for a neck dissection where they removed the largest lymph node that confirmed FL. At that time, I was told that with treatment, my life expectancy was approximately ten years. 

I was advised to immediately start treatment and was accepted into a clinical trial called ‘Hot MabThera’ where I was injected with Radioactive Iodine, coupled with rituximab. I was placed under house arrest for ten days and then continued rituximab maintenance for one year. I battled side effects like fatigue, mouth ulcers, geographic tongue where my taste buds moved the edge of my tongue and I couldn’t taste for almost a year, my platelet levels dropped quite low so I had to have a platelet infusion.

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My PET scan, three months after my treatment started, showed no evidence of disease (NED) and we celebrated. When I finished treatment I was told to expect a relapse within 3-5 years. It is now almost ten years since I was diagnosed, and I am still NED.

The biggest challenge for me was finishing treatment with the news to expect a relapse. I was told if I relapsed within two years my prognosis was not good. I went into a deep depression and experienced severe anxiety. Even though I have a very supportive family, I didn’t have the right kind of support. I needed to connect with others with the same condition.

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Almost a year after I finished treatment I set up the Facebook group ‘Living with Follicular Lymphoma’ and felt the immediate relief of community support as I connected with others also facing this disease from all over the world.

This is why I am so passionate about connecting all FL patients so we can support each other in a way that no one else can. If I could offer guidance to others in the FL community, it would be to find your people, connect with local FL patients in your area as well as build a support base online to help you get through the bad days and to give you the opportunity to support others on your good days.