Maintenance: the Good, the Bad & the Ugly

I'm currently on my final, longest, and least aggressive phase of chemotherapy treatment for ALL, which is called maintenance. 

What Is It? 

I started maintenance treatment in January 2014. For boys, this phase lasts 2 years and 7 months, and for girls it lasts 1 year and 7 months. 
Because I'm on a clinical trial, my treatment isn't the same as patients who were randomised to other experimental conditions. For me, maintenance treatment means the following: 

• Oral chemotherapy every evening
• Additional oral chemotherapy once a week
• IV infusion of chemotherapy once a month
• 5-day block of steroids every month
• Intrathecal chemotherapy every 12 weeks

However, some people on the trial get randomised to not receiving the latter three. 

The purpose of maintenance treatment is mostly preventative care; most of the leukaemia cells are killed in the intensive stages of treatment, and this is mostly to make sure they stay that way. 

The Good

Maintenance treatment is a lot easier on the body than the intensive stages. People will be put on different doses of treatment but in general, all of the side effects of the chemo slowly get a bit better and more manageable. Your hair grows back and the sickness and nausea aren't as incessant. 

As well as the meds getting more manageable, so are the hospital visits. I still need to go in for chemo, clinic and blood tests (fun fact: Google Maps has automatically marked the hospital as my "place of work") but this has gone from being nearly ever day to about every other week, which means hospital visits aren't running my life as much any more. 

Both of these mean that you can do more. This differs from person to person, depending on their situation, but I myself have been able to take on some voluntary work which I wouldn't have been able to do beforehand. Because my immune system is a bit stronger, I'm able to go on short breaks away and more social events, as well as a lot more freedom with what I can eat! 

A lot of the opportunities offered by cancer charities aren't suitable for patients on the intensive phases of ALL treatment, but maintenance gives you that bit more flexibility to take part in them. For example, you can see some of the stuff I've been up to with Teens Unite here. 

The Bad & The Ugly

One of the common complaints I hear amongst my ALL friends is that "people assume you're okay now, but you're not".

Basically, maintenance makes me feel like I've got a constant hangover. I can have the best night's sleep ever and still wake up feeling tired and drained of energy. This is something I have got a little accustomed to over time, but it still takes its toll. I often find I can't join in with things which are early in the morning or late in the evening, as I will be too fatigued, which goes against the grain of a 21-year-old's ideal social life. 

Most of the side effects are pretty manageable, and nothing I should complain about, but they are all still there. I spoke previously about how my hair is thin and falls out easily, and nausea and vomiting will affect me about once a month. Because my immune system is still pretty poor, I'm more susceptible to things like colds and infections, which hit me harder than they would a normal person. As I said, they're nothing I should complain about, but I still have unpredictable "bad days", which (in conjunction with day-long hospital visits) means that at the moment I couldn't even consider getting a part-time job. 

It was at the maintenance stage that I realised the longer-term implications of cancer. As many of you know, my steroids had to be stopped because of avascular necrosis in my ankles. This means that, in the past year, I have had to give up running and my gym membership: two things which I loved doing and really helped with my mental and physical wellbeing. (I've been struggling to find forms of exercise which I'm physically able to do, and am currently trying to give swimming a try, so fingers crossed!)

The most frustrating thing I've found with maintenance treatment is that I try to fit in to normal life again - the life that my school friends and other people my age are living - and find I'm not able to, or I don't fit in any more because I've been sat in hospital not doing anything for a few years whilst everybody else has been moving forward, which is unbelievably disheartening. 

Many patients, myself being one of them, enter maintenance and "try to run before they can walk". I've found this applies to most aspects of life: social, fitness, romance, work, etc. - like you're running through mud and getting nowhere fast.

Finally... 

Despite the good, the bad and the ugly, maintenance is something which I try my best to just get on with, and haven't really spoken (or moaned) about much until now. Of course, I have much to be thankful for, I guess I just wanted to put across the whole picture and both sides of the stage which I am at right now. 

As always, a reminder that everybody's experience of cancer is different, and I have seen so many different experiences of people going through maintenance. This is just about my own experiences! 

Feel free to add a comment or question below, or fill out the contact form!

Thanks for reading 

Pete

Spinal Tap

I've just had what I estimate to be my 27th spinal tap.  

Lumbar puncture, IT, spinal tap, intrathecal... a rose by any other name would smell as shit. 

For those of you who don't know, these play a big role in my treatment, as unpleasant as they are. 

What It Involves 

The procedure involves sitting on the edge of a bed and bending forward, so that the lumbar vertebrae of my spine open up. A doctor then prods and pokes around to find a good spot, then injects local anaesthetic into either side, to numb the flesh. Once numbed, the doctor inserts a needle into the gap between my vertebrae to puncture the spinal cord and collect spinal fluid. 

This is then swapped for a syringe if the chemotherapy drug methotrexate, which is injected into my spinal cord. I then need to lie down for around 30 minutes so that the chemo can "slosh around" in my spine. 

Why I Hate Them

Due to the number of these procedures I've had, it's not always straightforward and because of having had so many needles in it, the lumbar section of my back has formed tough scar tissue. This means that it has become increasingly hard to penetrate with a needle, each procedure now usually takes several attempts, sometimes by numerous doctors, and a few bent needles. As you can imagine, this makes these procedures more painful and lengthy than they should be. 

Because the spinal cord is surrounded by nerves, this also serves a problem, as if the needle hits a nerve it sends a painful "electric shock" through your body, which is very unpleasant. Sometimes, after an intrathecal, I'll be fine and able to carry out my daily activities. Other times, I'll be struck with a bad backache or headache, which means I'll have to recline or lie down for a few days, and restricts me a lot with what I can do, until it has passed. 

All of these, combined with stories of other people's experiences, have made intrathecals a cause of great anxiety for me, and so I always have somebody accompany me to appointments and take sedatives, as well as gas and air, to help me relax for the duration. 

Why They Are Important

The blood system and the central nervous system work independently. However, in some cases, leukaemia can transfer from the blood into the CNS. This is why spinal fluid is collected, to be examined, and chemotherapy is then administered as a precaution, to kill any leukaemia cells which may be present and to prevent any leukaemia cells from transferring. 

Because I presented with headaches and visual disturbances at diagnosis, the doctors were extra cautious with me, and gave me an intrathecal every week for the first 5 weeks of my treatment, which is probably why my scar tissue is so bad. Now that I am on maintenance treatment, I have them every 12 weeks, as per the standard protocol. 

And Finally... What To Do If You're Expecting

If you are reading this and you are due to have the same or a similar procedure, please do not be put off by what I have said. Everybody's experiences are different, many of my friends have gone through the same thing without any complaints, and most of the problems which I face with intrathecals are due to the abnormal amount of them which I have had. If you are worried or anxious at all, don't be afraid to discuss sedation options with your doctor, or to take somebody with you. 

To find out more about lumbar punctures, check out the NHS Choices website. 

Pete

Being Diagnosed

February 2013

It's Throwback Thursday, and also apparently "world cancer day", so this seems like as good an opportunity as any to go back to where it all began...

At the beginning of 2013, I'd not long turned 18, so was enjoying nights out and looking forward to becoming more independent. I was studying for my A-Levels, and I was probably the fittest I'd ever been in my life, with my daily routine including bodyweight circuits, a 3-mile walk to and from school, and running throughout the warmer months.

A week before I was diagnosed

During the Easter holidays, I took some time off from all of this to spend the whole two weeks at home, working on my Media Studies coursework. When that was all done, I got back into my school routine, but was surprised at how unfit I had apparently become due to being inactive. I found myself becoming exhausted after only 10 minutes of my walk to school, and found I needed to nap during the day just to function properly. I assumed that this was all due to over-working myself for my upcoming A-Level exams and coursework deadlines.

Things started getting worse, I saw a woman drop her ID, and found myself unable to run the short distance to give it back to her. I also started getting headaches, and people were commenting that I was looking visibly more pale. I didn't know what was wrong with me, but I was pretty sure it was something to do with my blood. My headaches got progressively worse and were accompanied by dark patches in my vision, so I went to see my GP. He thought it this was a "migrainoid" and prescribed some migraine tablets. 

That afternoon was the first sunny day of the year, so I dusted off a pair of shorts for the first time. That's when I noticed my ankles were covered in tiny marks, which looked like small freckles. When I went back to see my GP the next day, he thought this was an allergic reaction to the migraine tablets, but luckily took a blood test anyway. 

My first overnight stay in hospital
2nd May 2013

Within a few hours, I got a phone call, calling my back to the GP surgery. I remember sitting in the waiting room, worrying that I had diabetes and that I wouldn't be able to eat chocolate. My GP explained that my blood results had come back as "bizarre", I was very anaemic, had low platelets, and my white blood cells were very high. After being examined by my GP and a student doctor, he sent me to the hospital for further tests. On my way out, he asked me "what was it your dad had again?". This started ringing alarm bells, as my dad was treated for Hodgkin's Lymphoma a few years before. 

When I got to the hospital, I was escorted into a great newly-furbished private room, where I was asked a load of questions and had "an armful of blood" taken off me. I was told that I would need to have a bonemarrow biopsy the next day. I knew that this was a diagnostic test for cancer, but I thought that it was being done to rule cancer out as a possibility, before finding out what was really wrong with me. 

I was worried about the notorious pain of bonemarrow biopsies, but my main concern at this point was that I hadn't printed off my final draft of my Media Studies coursework, and that I didn't have my phone charger with me. 

It was explained to me that my excessive tiredness, lack of energy and pallour was because of my low red blood cells. The marks on my ankles were pinprick bruises which hadn't been able to clot due to my low platelets, and the patches in my vision were caused by similar bruises occurring on the retina of my eyes. 

The next day, my mum and auntie came to visit, who were shortly followed by a group of doctors. They turned off the TV and told everbody to sit down before breaking the news. They said that they had looked at my white blood cells under a microscope, and had identified them as cancerous, and told me that I had acute lymphoblastic leukaemia. 

I was a little shocked, but my first reaction was the pragmatic one: "okay, this is what I've got, what can we do about it?". They asked if I had any questions, so I asked the obvious one whenever cancer is brought up: "how early have you caught it?". Apparently this doesn't make much of a difference with ALL, as symptoms only present when the bonemarrow is roughly 100% leukaemia, and therefore every patient is diagnosed at around the same point. 

Overnight drip in Bristol
3rd May 2013

After dropping that bombshell, the doctors decided to drop another: I would need to be put on a clinical trial called UKALL 2011, which was only available in Bristol, and that the haematology team up there were expecting me in just a few hours, so that they could take a bonemarrow sample and send it away for analysis before the bank holiday weekend. 

This meant that we needed to leave straight away and drive to Bristol, in what was an emotional whirlwind, and I needed to tell most of my family members and friends about my diagnosis over the phone... 


I guess that was chapter 1 of my cancer journey throwback, I'm sure I'll post more in time. 

Pete

What Is ALL?

In May 2013, I was diagnosed with Acute Lymphoblastic Leukaemia. The ins and outs of it can be hard to understand, and equally as hard to explain to other people, so I thought I'd explain exactly what it is, as simply as I can... 

Acute Lymphoblastic Leukaemia (ALL) is a cancer of the white blood cells. Here, the term "acute" means that the condition progresses rapidly and aggressively and requires immediate treatment.

ALL is caused by a DNA mutation in the stem cells, causing too many white blood cells to be produced. The bonemarrow (where blood is made) releases these white blood cells before they have been allowed to develop properly, making them "faulty".

As the number of faulty cells increases, the number of healthy blood cells and platelets fall, which cause many of the symptoms of leukaemia, such as fatigue, weakness, bleeding and bruising.

Because leukaemia is cancer of the blood, it is not localised to a specific area of the body. This means that treatment can differ greatly from other forms of cancer which form solid, localised tumours.

Around 650 people a year are diagnosed with ALL in the UK, making it an uncommon cancer. Despite this, it is the most common cancer to affect children, with 85% of ALL patients being under the age of 15.

I hope that's been informative! If you want any more information, the best place to check out would be the NHS website.

Pete