Kat

Kat shares her story of double-hit lymphoma, including talking on film about her experience of an allogeneic stem cell transplant.

Kat

The first thing that strikes you about Kat when you meet her is her energy. When we interviewed her she had just got back from visiting her family in Hong Kong - a trip that seemed unimaginable a year ago. She was also looking forward to returning to work. As she commented, ‘For me, not being able to be the busy and active person I am normally was one of the worst side effects of being treated for lymphoma.’

Before she was diagnosed with lymphoma, 33-year old Kat spent her spare time running, cycling, swimming and in the gym – and going to as many rock gigs as possible! In August 2012 Kat completed a double triathlon, winning the ‘most improved time between two triathlons’ award despite the fact that, unbeknown to her, she had lymphoma in her abdomen. After the triathlon, however, Kat was in so much pain that she went into A&E at her local hospital and it was from then that her world was turned upside down.

Early signs

‘Before the triathlon, I hadn’t had a day off sick for over 8 years. For some time, though, I had been experiencing night sweats. They were so bad that sweat was running off me and within half an hour my duvet was wet. It was happening so often that I put a bath towel down to sleep on, getting up to change it once it was drenched. I was sleeping with a stack of bath towels next to my bed!

I had also noticed that my energy level had changed dramatically. I am a keen reader and always have my head in a book on the way to and from work, but I was falling asleep on the Tube. What finally prompted me to go to my GP, though, was a lump that appeared on my neck.

The doctor suggested that my lymph nodes were doing what they are designed to do - fighting an infection – but I felt sure that something was seriously wrong. After the triathlon I had excruciating pain in my spleen so decided to go back and see another doctor. The second GP referred me to the haematology team. But while I was waiting to see the haematologist, I was in so much pain that I went to A&E and they called the haematologist to come and see me. He said that the pain was being caused by an enlarged splenn and that I probably had a non-Hodgkin lymphoma. He organised for a biopsy to be taken to find out whether this was what was causing all my symptoms.

My lymphoma diagnosis

The biopsy came back showing that I had a rare type of lymphoma - B-cell non-Hodgkin lymphoma, a ‘double-hit lymphoma’. This type of lymphoma has two genetic abnormalities in the cancerous lymphoma cells. My lymphoma showed a mix of features, meaning it was somewhere between a diffuse large B-cell lymphoma and Burkitt lymphoma. I had several other tests and the results showed that the lymphoma was stage IVB.

Because it was such a rare type of lymphoma, following the tests I was transferred to a hospital that had treated lymphomas like this before. I had Googled my type of lymphoma and had lots of questions for the doctors there. My new consultant explained that there had not been many studies done in this type of lymphoma yet, and that information on it on the internet might well just be discouraging and unhelpful. The conversation with him was reassuring – he explained my condition and filled me with a lot more confidence.

Despite that, I can still recall the conversation I had afterwards with my wonderful husband Ade, asking him to make sure my family were looked after if anything happened to me.

How we coped

Neither Ade nor I wanted to have to go through all the details of my illness with all our friends and family on a daily basis. Ade suggested I write a blog, so that anyone who wanted to know how things were going could read it. I decided from the word go that I would be honest, with a no holds barred approach, and found writing the blog really therapeutic. It was a way of getting a lot of anger and fear off my chest. I didn’t want to upset people, but I felt there was no getting around the fact that this was a cancer and that it was a fast-growing kind. Writing the blog helped me get through the whole process and maintain a level of sanity. There were still time, though, when I feared I was slipping into a depression.

What I have found out since then is that other people around the world who have been diagnosed with double- or triple-hit lymphoma found my blog enormously helpful. As my consultant warned me early on, there is very little information about these rare lymphomas online and people reading my blog apparently found comfort in reading about someone else who was going through it.

I discovered the Lymphoma Action forums early on and started a dialogue with another young woman who had been treated with the same chemotherapy regime my doctors were suggesting for me. We are still in contact, and I honestly don’t know what I would have done without her support.

Starting treatment

I was treated with the R-CODOX-M/R-IVAC regimen and this involved being in hospital for up to 16 days at a time - I began to feel like the hospital was becoming my home.

I coped well with the first round of treatment, although I did have a reaction to the rituximab the first time I had it. I started to feel more and more unwell as the cycles went on, however. I had problems with not being able to sleep and with pain, inflammation and ulceration of my mouth, throat and stomach lining, due to mucositis (which can cause painful mouth ulcers to develop). This made it difficult for me to eat. One thing that really helped with the mucositis was sucking on an ice lolly while I was being given the chemotherapy - this made an enormous difference, especially when I was having the melphalan.

After the chemotherapy had finished, the plan was for me to have an autologous stem cell transplant so the doctors needed to harvest my stem cells. To make sure my bone marrow was completely clear and to help get more stem cells into my bloodstream I was given a different chemotherapy regimen known as R-IVE. Unfortunately I got an infection while my white cells were low after this treatment and this meant I didn’t have enough stem cells in my bloodstream to carry out the harvest.

Change of plan

Before giving me another cycle of chemotherapy, the doctors arranged a PET scan to check that my lymphoma was completely under control. Unfortunately, it showed instead that my lymphoma had returned – my remission had only lasted 6 weeks. The doctors therefore decided that an autologous transplant wasn’t going to work for me and that I should have a donor transplant (this kind is called an (‘allogeneic’ stem cell transplant) instead. My brother had been tested as soon as I was diagnosed and we knew that unfortunately neither he nor anyone else in my family was a match. I was concerned about finding a donor through the Anthony Nolan Trust because of my ethnicity, but a donor was found really quickly.

This time I was given a different chemotherapy regimen known as ESHAP to control my lymphoma before the transplant. That worked a bit but the doctors wanted my lymphoma well controlled before my transplant so next I was given a regimen known as mini-BEAM. It was a huge relief when the PET scan showed this had done enough and I could move onto the transplant stage.

During this time I was learning more and more about lymphoma and found the Lymphoma Action website invaluable. I needed to do something, and reading about the different types of lymphoma kept my brain active. I found it astounding that there are more than 60 types and yet I hadn’t even heard of lymphoma before my diagnosis. This was perhaps a strange choice of reading material, but I found it all fascinating.

Having the donor transplant

Before I was given the stem cells, I had another 5 days of chemotherapy and was also given total body radiation (TBI) over 4 days, which took a lot out of me and made my skin very sensitive and dry. It was explained to me that you need to have these very strong treatments to kill off the cells in the bone marrow, in readiness for receiving the donor stem cells. Knowing this made me feel very vulnerable and although I knew I would have injections of a special ‘growth factor’ called G-CSF to help boost the numbers of white blood cells my bone marrow would be making, I did feel scared.

The team also discussed fertility with me, and I was told that the high-dose chemotherapy and TBI would make me infertile. I was offered support at the hospital, but found the greatest support in talking to other people who have been through this themselves.

The transplant is given intravenously and the stem cells are mixed with a solution called DMSO, which has a strong smell but stops the cells being damaged when they are frozen. I was also given the drug Campath to help me accept the donor cells into my body. This wasn’t fun – a reaction to Campath made me feel like I could not breath, so the infusion had to be stopped several times.

Then came the waiting until the donor’s stem cells started to grow within my bone marrow. During this time, I was isolated in my own room and felt a bit like I was just one big lab sample at times! The biggest problem for me was the boredom. I didn’t have the energy or the concentration to read and, although the internet is wonderful, even being online becomes boring after a while. I found the music I have always loved helped enormously. It helped to drown out the bleeping and the air conditioning and it blocked out an empty-feeling echo in the room.

I waited anxiously for the donor cells to start grafting into my body. It was an amazing feeling when the counts started to climb up from zero. I started to think there would be a time when I could be outside again. They had suggested I would be in hospital for around 8 weeks, but I was able to leave hospital after just 3 weeks and 2 days.

I don’t seem to have problems with graft-versus-host disease (GvHD),  although they are investigating whether I may have GvHD in my bone marrow as my neutrophil numbers remained low and I needed to be supported by G-CSF injections. The plan now is to wean me off them and see if I can manage without them.

Going through treatment, I kept a lot of people away, especially my family. I really didn’t want them to see how ill and frail I was and this was the way I wanted to deal with it. My parents wanted to help and did a lot for us, but I wanted to protect them. I just wanted Ade. It has changed things, and he now wraps me up in cotton wool, ‘Are you feeling OK? Are you cold?’ He really doesn’t want to see me like that again.

Moving forward!

I can’t wait to go to a gig again and being able to visit my family in Hong Kong was a real milestone for me. I am so grateful for the fantastic treatment, but I am someone who cannot sit still, something I seem to have inherited from my Dad. Before my diagnosis, I was careful about things, but this experience has made me far less cautious. If I want something, I buy it, if I want to do something, I start planning it.’

Kat received a Beacons of Hope Award from Lymphoma Action as a result of many nominations received from people all over the world who had found her blog inspirational.