Sinead’s story: DLBCL

I went back to work in mid January and tried to see my GP again. He was on holidays so I saw a new doctor in the practice. She was onto it straight away especially when I told her that I had asthma like symptoms but my preventative puffer wasn’t really working. She ordered numerous tests which confirmed my lymphoma diagnosis and she referred me to Genises Care to see a haematologist. More tests were ordered to determine the sub type.

I was diagnosed with stage 3 DLBCL.

Whilst waiting for my chemo treatment to start based on test results, my leg swelled up like a balloon as the lump was clearly blocking blood supply. I was really sick and scared. I called Genises Care and they saw me immediately. I was started on a dose of steroids, medication to protect my kidneys, and blood thinners. Tests confirmed that there were no clots and my heart was in good working order.

I was fast tracked to Chemo: 6 cycles plus two top up doses of targeted therapy. I was offered the chance to go on a clinical trial across the city but there was no guarantee that I would get onto the trial and the risk around blood clotting was too high to wait so I decided to go with the standard treatment which started on 1 February 2023.

My treatment involves 3 days of infusions involving many chemo drugs at fortnightly intervals. This was supported by 5 days of steroid medication and others to protect kidneys, bacterial pneumonia and shingles. After cycle 2, I came out in an almighty rash which was an allergic reaction to the antibiotic and the medication for my kidneys. These were discontinued and the antibiotic was replaced by another drug provided by infusion once a month. I hated it. My breathing was impacted and I had a strange feeling of numbness or cold on my face. Symptoms disappeared quickly though. I also discovered that this antibiotic was not covered by Medicare. I was lucky enough to claim some of it through private health care.

Now for symptoms. I have to say I was pretty lucky even though I had some real rough days. I had one day of diarrhea, nausea and allergic reaction. I had bad reflux but that can be managed. Skin was generally good but I moisturised twice a day and more when I was getting dry patches. I was super sensitive to the sun so I only went outside early morning or late afternoon during the summer. Sunscreen was part of my daily routine.

I have just finished my treatment with one maintenance dose of immunotherapy to go (May 2023).  Cycle 5 and 6 were the hardest for me. My body had enough and the symptoms had peaked plus I needed a blood transfusion. Fatigue, a burning tongue and hands plus reflux were my worst enemy. Dental hygiene is so important and I was hyperfocused on it. Still got the odd mouth ulcer which I managed with orabase protective paste.

I haven’t experienced severe pain or tingling in my hand and legs. I did exercise as much as my body allowed. I took walks with my dog and swam in the salt water ocean pools on good days. Yoga was also really useful to keep my legs and hands moving.

With one treatment to go, scans are showing that the treatment has worked. I first noticed the benefit of my treatment in the first cycle. It was like a miracle. The lump in my groin just disappeared and the swelling in my leg went down. I just could not believe it. As with many patients I did lose my hair but not my eyebrows or eyelashes. I just didn’t really care about losing my hair. Survival was and still is my goal.

I have had great support from friends and family and I have a young teenager in the last year of school who is coping remarkably well and was my support crew for one of my chemo sessions. I was lucky enough to have a lot of annual leave accrued at work because I have been there a long time. I also got a lovely support kit from Lymphoma Australia and regularly look at the resources available.

My most recent scan was completely clear. This means I’m free of this awful disease. I just need to stay that way and focus on building my mental and physical strength. That is my story so far.