Personal experience
An eye operation that led to a diagnosis of CNS lymphoma
Penny talks about her treatment with chemotherapy, an autologous stem cell transplant and radiotherapy.
In 2020, and at the age of 61, I got uveitis in both eyes. Uveitis is an inflammation of the middle layer of the eye which can cause pain and changes to vision. It started as black dots in the eye, and I was put on high-dose steroids to manage it. The steroids took over a year to clear the uveitis up and left me with debris in my eyes which made my vision blurry, making it difficult for me to work.
In November 2021 and May 2022, I had vitrectomies on both eyes, which is surgery to the middle portion of the eye where the vitreous jelly is removed and the body replaces it naturally. I was told that they would biopsy the vitreous jelly and that the pathologist ‘checks off’ a number of conditions, including multiple sclerosis, sarcoidosis and lymphoma. I now understand that uveitis can be a masquerade for intraocular lymphoma.
In June 2022, I received a phone call from the ophthalmologist telling me that the sample had tested positive for lymphoma. I now needed to have an MRI scan and blood tests to identify the type of lymphoma. The MRI scan revealed a lesion on my brain and I was diagnosed with primary intraocular lymphoma, which is a type of primary central nervous system lymphoma where lymphoma cells invade the retina, vitreous or optic nerve.
I was told that although this type of lymphoma is usually aggressive it is also very treatable and that the aim was cure. Because it is also very rare, my treating team consulted with other specialists throughout the country. This seemed to me to take a long time, but I understood it was important that the best treatment was agreed upon.
By August 2022, I started to have symptoms, including having problems with speech, not being able to find the right words for even common things and forgetting names. In addition, my left foot dropped and I could not lift my toes up. I thought these things would improve, but after a couple of days I called the haematology non-emergency number. They said I should come in straightaway and told me not to drive.
I had another scan which showed the brain lesion in my parietal lobe that they saw on the earlier scan had tripled in size to 25mm. I was admitted into hospital and the first round of chemotherapy was started a few days later, after I had a PICC line fitted.
My doctor explained that treatment would be a combination called MATRix, which involved the chemotherapy drugs methotrexate, cytarabine and thiotepa together with rituximab which is a targeted therapy. The methotrexate can go through the blood/brain barrier to attack the brain lesion. This would be followed by a stem cell transplant and radiotherapy. They believed this would be the best option and most likely to be successful.
I had four rounds of MATRix between September and November 2022. Then I had a gap to recover in preparation for an autologous stem cell transplant, using my own stem cells.
“All the way through I felt I had excellent care and trusted them to do the best for me.
Before the chemotherapy started, I had a PICC line put in and would really recommend having one. I have difficult veins and am a bit queasy with needles, but the PICC line made everything so much easier and less stressful.
I found the chemotherapy manageable at first and although very tired, I felt surprisingly robust at the beginning. By the fourth round I felt weaker and picked up infections like flu and C. diff which sapped a lot of my energy. I had a blood clot in my left arm near the PICC line, but this cleared up.
My first harvesting of stem cells didn’t yield enough, so I had to have injections to help, and in February 2023 I had my autologous stem cell transplant.
I found the stem cell transplant was actually quite manageable. However, a few days later, I developed mucositis (where your mouth and gut are inflamed) which was so painful that I couldn’t eat or drink. I was given morphine, but still struggled. There were several days where I lost track of time and got to the point where I was beyond making any decisions for myself. I am so grateful to my best friends and cousin as they supported me through this time, creating a network so that friends could be updated without me having to talk through what was happening.
I had been in isolation through all this treatment and couldn’t wait to get home. As I live on my own, I organised for someone to come and stay with me for three weeks when I went home. I don’t think I would have been discharged without this in place and wouldn’t have been able to cope without it. My carer was wonderful, helping me enormously with my recovery; it was really tough when she went. I was given several aids for the house like a seat in the shower and a frame around the toilet which were really helpful as I recovered.
I was advised to have radiotherapy after the chemotherapy and stem cell transplant. Because the target for the radiotherapy was my eyes, I needed to have a face mask created. I am a bit claustrophobic and thought this would freak me out. Although it was tight over my face, it had holes in it, and I could breathe easily through my nose. I was only on the table for 10 to 15 minutes for each session and the nurses were fantastic, so I found it manageable.
At the end of treatment, fatigue was extreme. At first, I would go to bed at 6pm and wake up at about 8 or 9 in the morning. Despite all that, I still needed to have an afternoon nap. I was exhausted and I had to come to terms with the fact that it was going to be a really long haul. I tried to go out every day for a very short walk around the block and was loaned a mobility scooter which has given me independence, enabling me to go to the supermarket.
“I miss jumping in a car and going places, as I had to surrender my driving license for two years because the lymphoma was in my brain.
Having said that, I have only recently regained my nerve to use trains or buses. During treatment I confined myself to home to avoid infections.
My medical team had given no promises about how long recovery would take, but it has taken longer than I would have thought to regain my strength. I am strangely grateful to my cancer, as it has reminded me how precious life is and makes me want to make the best of everything.
Lymphoma Action have been a lifeline to me. I got their books and leaflets – in fact I got multiple copies so that I could give them to friends who wanted to know more about my condition. I also joined their Facebook group which I find really valuable as they are such a wonderful, supportive group of people who offer so much encouragement. I also attend the virtual coffee mornings and enjoy talking with people there.
