Jennifer Gavin

Chronic myeloid leukaemia (CML) usually affects people over the age of 60. So, when Jennifer was diagnosed with CML at the age of 18, she was shocked. Now 30, Jennifer recounts her experiences.

My mum was the first to raise her concerns as I had lost a lot of weight over a short period of time leading up to Christmas 2006. Being an 18-year-old, I hadn’t really noticed the weight loss, and felt that I was constantly eating. She thought I may have an eating disorder and booked a doctor’s appointment for me.

The doctor weighed me but wasn’t overly concerned. They said to monitor me over the coming months to see if I lost any more weight. I then started to get headaches and double vision but put them down to working full-time and being at evening school to study for my degree. I also had pain in my lower back, which I thought was from overdoing things, and swelling on the left-hand side of my abdomen (I couldn’t see it myself, but it was very noticeable to others). This was my enlarged spleen where the additional white blood cells were being stored.

It was on the 18th January 2007 that I started to vomit and made an appointment at the doctors to see if I had a stomach bug. Whilst I was at the doctors, I mentioned that I had been having headaches and double vision and the doctor looked in my eyes. It was at that point that she said, “Can I phone a family member to come and meet you as I want you to go straight to the hospital.” She phoned my mum and asked her to come and meet me at the surgery and gave me a letter sealed in an envelope to give in at the hospital. At this point I didn’t have a clue as to what was wrong with me.

My GP could see the white blood cells and swelling behind my eyes and had written an estimated diagnosis in the letter that I had to take with me. When I arrived at the hospital, I waited in A&E for four hours and eventually had bloods taken. I was then admitted to a ward and put on a fluid drip.

It was the following morning when the doctor and his team came to my bedside. I was all alone at this point as my mum and dad had gone home to try and get some sleep. The doctor asked if I wanted to wait for my parents to come back before he explained what was wrong with me. I said yes. When my parents arrived, the nurse took us down to a private room and brought us tea and toast. The doctor then came into the room and explained that I had a condition called chronic myeloid leukaemia (CML). I couldn’t really take it all in and didn’t know anything about leukaemia apart from it was a type of blood cancer. He explained that I was quite a rare case as this type of leukaemia normally affects people aged 50+. He explained about treatment options and life expectancy, which were positive for such a shocking diagnosis. My parents had questions for the doctor which he answered where he could, and he informed me of two options: I could either stay at Whiston Hospital, which is my local hospital, or move to the Royal Liverpool Hospital where there was a Professor who was a specialist for this condition. I opted to move to Liverpool Hospital and was transferred via ambulance later that day.

After being transferred to Liverpool, I was fitted with a central line in my leg. I was then started on an apheresis machine which took my blood and started to separate the white blood cells from the red ones. I had to have six attempts at the machine as the white cells kept coming back. This was trying to bring down my white cells to a normal level. At the same time, I also started on a drug called Hydroxyurea. This drug was trying to stop my bone marrow from producing more white cells.

I was in hospital for a week taking the Hydroxyurea and having sessions on the apheresis machine. I was discharged from hospital after a week, with daily and then weekly blood tests required for the next few weeks. I was sent home with lots of leaflets about my condition from Leukaemia Care and Macmillan Cancer Support. I found that reading these leaflets helped me to understand what I was going to be living with.

Following the shock diagnosis, my family have supported me so much. My three sisters and one brother volunteered to be tested to see if they were a bone marrow match. Following the results, it was revealed that my little brother was a match should it be needed.

In March 2007 it was decided that my blood levels were improving with Hydroxyurea and I could be put onto a clinical trial for a drug called imatinib (Glivec). I started on the Spirit 2 Trial taking 400mg of Glivec daily. There are side effects of the drug such as feeling nauseous, headaches, tiredness, and bone pain. After trial and error, I found that taking the medication after my evening meal meant that the side effects started when I was going to bed and they didn’t bother me as much as I was asleep.

I reached MMR (Major Molecular Response) shortly after starting Glivec. I am monitored every three months at the Royal Liverpool Hospital, where I have blood tests and a PCR test to check the amount of leukaemia cells in my body. The care and attention that I have received at that hospital has been second to none. I am so grateful for all that they have done for me.

I am now 11 years after diagnosis, and I’ve learned to live with my condition and try not to let it control my life. I have continued to work throughout and also completed my degree with honours in 2012.

In 2010, I met my now husband. He has taken time to research my condition and supports me endlessly. We got married in 2012, and then in 2015 decided we wanted to start a family. After undergoing some tests, it was revealed that we would have to undergo IVF to help us to achieve this goal. I stopped taking Glivec and was monitored closely throughout the IVF and pregnancy and my levels remained within a safe boundary. In July 2016, we welcomed our beautiful baby boy into the world.

I was lucky enough to be able to stay treatment free until November 2016 when my levels started to rise again. I went back onto Glivec and it quickly started to bring my levels back down and I have been at MMR ever since.

I feel like the luckiest person in the world to have the most supportive family, husband and now our beautiful little boy. The medical teams who have looked after me for the past 11 years are amazing! They acted so quickly and have saved my life. I try to cherish every minute now, as I know others aren’t that lucky.

Spot Leukaemia is important as it should hopefully help people to spot the signs and symptoms of leukaemia in the early stages so that they can be treated straight away. The initial symptoms are not always obvious that it could be a serious illness. Hopefully this campaign will help to raise awareness of things to look out for.


Leukaemia Care Support Groups

Support groups at Leukaemia Care provide invaluable spaces for members to come together to share experiences, speak openly about challenges and share information. The results can be astounding with members often trying new things and feeling more positive.

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