Living with Late Effects

In this article, we take a look at late effects: side effects that do not occur for months or even years after treatment ends. We explore examples of late effects, how they impact a patient’s life, and what type of help is available for these patients.

What are late effects?

Some patients are left with long term health issues or late effects of previous treatment as the treatment leukaemia patients receive can be toxic and harsh. Late effects are side effects that do not occur for months or even years after treatment ends. These late effects can be physical or emotional. Not everyone gets late effects, the risk depends on the type of treatment, the dose of treatment and the patient’s age at the time of treatment. Examples include fatigue; eye, hearing and mouth changes; skin and nail side effects; bone and joint issues; endocrine and thyroid changes; cognitive or thinking effects; lung toxicity; heart toxicity; nerve side effects; kidney and urinary toxicity; secondary cancers; mental health effects. Patient Ellen explores these side effects in more detail, sharing her personal experiences of late effects, including chronic fatigue and left ventricular systolic dysfunction (LSVD).

Do both acute and chronic leukaemia patients get late effects?

It is not just acute leukaemia patients who can suffer from late effects, both acute and chronic leukaemia patients can experience late side effects. For example, there are childhood patients of CML who have reached 0% leukaemic cell levels and now suffer from late effects from their treatment e.g., a bone marrow transplant.

Why is it important to raise awareness?

There’s lots of focus on side effects during treatment, but not so much on the late effects post-treatment – these are still as important, especially in a world with improving survival rates. These survivors have complex health care needs that need specific supportive care.

Additionally, to increase the accessibility of this supportive care for late effects, we also need to raise awareness of the issue itself.

What help is available?

So, what support is there for patients experiencing late effects? How accessible is this support? And how aware are patients of these clinics?

Late effect clinics or long-term follow up services, care for people who have undergone curative treatment for cancer, to ensure that further health issues are spotted, monitored, and where possible, prevented. For example, for patients with childhood cancer that may require long-term surveillance to improve their mental, physical, and general well-being.

An example is the Late Effects Service in Sheffield which was one of the first to be established in the UK and provides ongoing care for survivors of childhood cancer. They hold monthly team meetings to discuss patients attending for late effects (LE) follow-up at Sheffield Children’s Hospital and the Teenage and Young Adult LE clinic for older patients whose care has transitioned to the Royal Hallamshire Hospital.

These meetings are attended by a paediatric oncologist, paediatric endocrinologist, specialist nurse, physiotherapist, occupational therapist, psychologist, CLIC Sargent Social Worker and an MDT coordinator. All patients receive an individualised Long Term Follow Up Summary and Surveillance Plan on entry to the service.

If you’d like to learn more about how Late Effects Services work and about the Late Effects Service at the Royal Hallamshire Hospital, here is an NHS booklet that explains more.

Now, we’ll hand it over to Ellen who underwent treatment for acute promyelocytic leukaemia (APL) twice in her childhood, she’ll be sharing her experience of late effects.

Patient Perspective – Ellen Bisci

Are they something that you’ve heard of? Are they something that you currently have?
And finally, are they something that was discussed with you at your clinic follow-ups?

The answer may be no for all or one of these questions, but I feel that late effects are something that we should all be aware of.

My name’s Ellen, I’m 25 and the founder of ICAN.CER, and I’m someone who has had APL twice myself. I have been left with multiple late effects from the treatment I had in childhood and I feel that there just isn’t enough awareness, understanding or support for those who like me are living with late effects, so that’s why I started the Instagram page @ICAN.CER to highlight these issues, and connect with others going through the same thing.

I was first diagnosed with acute promyelocytic leukaemia (APL) when I was 9. I’d had some bruising and my family took me to my local hospital where I had blood tests. I was due to go on my first big school trip for the week a few days later. The hospital told me to go and that they would be in touch if there were any issues. Unfortunately, there were, and my parents had to collect me from my school trip and the next day we arrived at GOSH (Great Oldman Street Hospital) – the rest was history.

The treatment was tough, really tough, and I know that I certainly wasn’t prepared for just how gruelling it would be. But I got through the 4 blocks of intense chemo, with my family with me every step of the way and when treatment finished, life pretty much returned to normal. I had a couple of weeks where I did half days at school as I was pretty fatigued after 6 months off school, but apart from that I had no other late effects, and I honestly thought that my cancer was gone forever.

Unfortunately, just under 3 years later (when I was 12) I relapsed. I’d had pains in my legs for some time and the GP dismissed it thinking that it was just growing pains. I ended up in A&E due to the pain worsening and a severe headache and once again I was told to go home and that I just had a migraine. A couple of days later a consultant from the hospital called and we were told that I had “spots on the brain.” I was sent straight to GOSH and I was told that the leukaemia was back. I was older this time and more aware of what I was facing and the consequences.

The treatment this time was very different. I was put straight on intensive chemotherapy, and it almost felt tougher as I knew what was to come. I also had a massive stroke, meaning that I was unable to walk/talk/communicate or do anything for myself and I can honestly say that that was the toughest time of my life. Being previously an A star student to suddenly not even being able to say my name or ask for a glass of water was horrendous – they never thought that it would return. I had daily physiotherapy/occupational therapy and speech and language therapy, and I am fortunate that it worked. I still have memory issues and weakness in my right leg and arm which can be really frustrating, but I know that I am very fortunate to have had such a miraculous recovery.

I went on to have arsenic treatment which was a relatively new treatment at the time, and I continued on ATRA which collectively has a very high success rate for APL, and therefore I have been in remission ever since.

My late effects started pretty much straight after my treatment had finished. I’d had some leukaemia killing medications, but which also caused headaches and it wasn’t until I came off of them and the side effects continued that it was all investigated. I was diagnosed with intracranial hypertension (high intracranial pressure) and my first shunt was inserted (tubing to drain the fluid in the brain) in 2010. I would say that this was when my first late effect occurred – it was unusual for these symptoms to occur when the medication had finished and therefore my family and I had a real battle to get a diagnosis. Eventually, we had to go privately as I just wasn’t being listened to or getting any help for the debilitating constant headaches that I had – it turned out that my shunt had broken and needed replacing. Since then and up to now I have been under the same team and have had 12 brain surgeries.

I have since been diagnosed with epilepsy, chronic fatigue, chronic migraine, hypothyroidism, urinary dysfunction, postural tachycardia syndrome (POTS) and LVSD (heart failure) all of which I didn’t have prior to my cancer diagnosis. It was the LVSD that was only diagnosed 2 years ago that really surprised me and hit me emotionally, as I could not believe that chemotherapy, I’d had 11 years previous could suddenly affect my heart all these years later.

Since my late effects began to the current day, I have really battled to be heard, acknowledged and be treated. There seems to be a real lack of knowledge and understanding about late effects. People seem to think that once initial cancer treatment is finished, you are automatically the person you were pre-treatment and for a lot of us this just isn’t the case. It took a long time for many of my late effects to be diagnosed (even my heart failure which I had all the classic signs and symptoms for), and my family and I had to resort to going privately to get answers and diagnosis’. I feel fortunate that we were able to do this but whatever your circumstance, finding a supportive team of medics is so important.

I know that there are a lot of people in my position with multiple late effects and it is tough as it impacts all aspects of our lives, but I don’t want my story to feel like a negative one because I feel so lucky to be alive and where I am today. Late effects do not affect every single person, it seems pretty random on who does get them and who doesn’t, but we need research and less invasive treatments for the risk of late effects to reduce. There need to be more resources for late effects clinics and medical professionals need to have more knowledge in this field.

A piece of advice that I would give to anyone going through late effects (or any cancer treatment for that matter) is to push. Keep pushing until you have answers because you know your body better than anyone. I’m also a huge believer in being kind to yourself. Days vary and we live in a world where everyone is striving to achieve the most that we can but sometimes it’s important to stop, reflect on the little wins, and always, always be kind to yourself.

 

Are you struggling with late effects from your cancer treatment?

We have a range of services and support available to you:

Late Effects Information Booklet

This booklet is designed to provide you with information about the late effects you may experience, what to expect and how they may be managed. If you need specific advice or are concerned about a particular late effect, please contact your medical team or Clinical Nurse Specialist.

Webinar about Survivorship and Late Effects of Acute Leukaemia

This webinar will explore potential long-term effects of acute leukaemia treatment, such as physical side effects and mental health issues. We will also provide tips on coping if you are affected by any of these issues and where to seek further support.

Helpline and support – 08088 010 444.

If you’re a patient struggling with late effects, you can contact us for the advice and support you need. Whether you want to talk to us about your late effects or just want to chat with someone who understands what you’re going through, don’t hesitate to get in touch with us on freephone 08088 010 444.

Our helpline is FREE from landlines and most major mobile networks.

Buddy Service

Our Buddies are people just like you who have a personal experience of a blood cancer. They are not trained therapists or medical experts, but they do understand what you’re going through.

Our one-to-one buddy support service matches you with one of our trained volunteers for regular or one-off telephone calls or emails.

Show your support

We’re calling on the NHS and UK governments to work with us to improve awareness of the issues faced by leukaemia patients in getting diagnosed early.

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