Guest Post - Leukaemia & Lymphoma Research

Acute Promyelocytic Leukaemia (APL): From Diagnosis to Treatment

We are the blood cancer charity Leukaemia & Lymphoma Research. We work to improve the lives of patients with blood cancers such as Acute Promyelocytic Leukaemia (APL). Our research aims to stop people dying from blood cancer and even prevent people developing blood cancer in the first place. For over 50 years now we have been working to beat blood cancer and we won’t stop until we do. We’re honoured to have heard Emily’s story and see the people that she has inspired through sharing her experiences in dealing with APL.

Acute Promyelocytic Leukaemia or APL is the M3 subtype of Acute Myeloid Leukaemia (AML). Although the symptoms of APL are similar to the symptoms of AML the treatment is usually very different. Many of the symptoms of APL are a result of cancer cells interfering with bone marrow and the production of healthy red blood cells, white blood cells and platelets.

APL can develop at any age and usually develops very quickly, with symptoms appearing in a matter of days or weeks - Emily was diagnosed at age 20 after she developed symptoms that could be confused with tonsillitis.

The most common symptoms of APL include:

• Unusual bleeding and bruising – bleeding is a serious symptom of APL and needs immediate attention

• Paleness

• Tiredness and breathlessness

• Frequent infections and difficulty in fighting them off

Other less common symptoms for APL:

• Bone pain

• Swollen glands

• Abnormal pain

• Occasionally some patients may develop chloromas, which are small lumps under the skin caused by leukaemia cells clustering

Treatment

The treatment for APL is begun as soon as possible after diagnosis to combat the excessive bleeding (caused by the lack of platelets which clot blood) that is so common amongst patients with APL.

Chemotherapy

The main treatment for APL is Chemotherapy. Chemotherapy will consist of a combination of anti-cancer drugs, these drugs are administered in a precise order depending on the patient’s age, general health and the severity of their condition.

Stem Cell Transplant

Patients who are generally in good health are considered for stem cell transplant. Stem cell transplant is a very strenuous form of treatment that is only recommended for patients who have relapsed or have an aggressive form of APL. Older or weaker patients may be offered a less invasive form of the treatment.

Supportive Care

As infections and treatment complications are quite common amongst patients with APL, supportive care is a key factor in a patient’s recovery. Supportive care for patients with APL most commonly includes treatments for anaemia caused by lack of red blood cells and treatments for Thrombocytopenia which results in excessive bleeding.

Prognosis

The likelihood of being cured is very much dependant on factors such as the subtype of APL, how far the disease has progressed before diagnosis and treatment, age and general fitness.

Although younger patients with good fitness levels are likely to respond better to treatment, the prognosis for patients with APL is one of the best within the AML diagnosis. Following the correct treatment over 70% of patients with APL were cured.

In the spirit of National Cancers Survivors Day, which was on the 1st research has helped in adding more success and inspirational stories such as Emily’s. Charities like us will continue to invest in research to beat blood cancer. If you are struggling to deal with blood cancer, visit our website for patient support resources to help you get through Acute Promyelocytic Leukaemia and other blood cancers.

How I Told My Friends I Had Cancer...

Taken 6 days before I was diagnosed.

I was thinking back the other day, about when and how I told my friends that I had cancer.. in hindsight I probably could have handled it better and probably should have told them straight away. But I didn't. Telling my friends that I had been diagnosed with cancer, I knew, wasn't going to be easy. I'm not one of those people who likes to tell others every single last detail of their personal life, or 'you'll never guess what happened to me today.. well I'm going to tell you!' kind of person... I see a lot of people, especially on facebook, documenting every single little thing that has happened to them either with a 'selfie' or a picture of the incident taken literally as soon as it has happened... be it a nosebleed, a paper cut or falling down the stairs.
So when it came to me telling my friends, I literally just dropped it into conversation like it was completely normal and something that happened on a daily basis. I was diagnosed on the 20th June 2013 and the majority of my friends didn't find out until the 1st July 2013... so a good 12 days later. I put up a status on my facebook profile, thanking the handful of friends who already knew about my leukaemia diagnosis for their love and support. The exact message was..

 'Just wanted to say a massive thank you for the love and support since I came into hospital with Leukemia. I really appreciate the messages and I shall get back to you as soon as I can, so thank you.  xxx'

Now, I know putting it up on Facebook a lot of people won't agree with. Something as serious as cancer should probably be told in person or over the phone, not something to be stumbled upon as your friends are scrolling through their newsfeed. However, I didn't want to call anyone. I didn't want to say that I was in hospital. I didn't want to see anyone. I just didn't want to have to verbally communicate with any of my friends. I knew that if I called one person, I'd have to call them all... and in doing that each call would end up progressively worse than the last and I would have ended up either a hysterical mess at the end of the conversation, or a complete mess as soon as they picked up the phone, unable to get any words out.

Prior to breaking my cancer diagnosis to my friends, I'd been texting them whilst I was in hospital acting like everything was wonderful... conversations of, 'How are you?' and 'How has your day been?' My response was, 'I'm great thanks! How are you lovely?!' and 'Yeah, it's been pretty boring actually! Ha! You had a good day?' ...for me this was so much easier to do than actually a) acknowledge the situation I was in, or b) send back an essay of a message, all about my day of lying in bed, being checked over by doctors and nurses and continuously having blood and platelets and drugs pumped into me. I didn't want to bother anyone. I didn't want to burden them with how my life had suddenly been turned upside down. I didn't want them to have to feel how I was feeling... so for me, it was easier to act like nothing was going on and I was lounging about at home like I'd normally be doing during the summer, watching Jeremy Kyle and Honey Boo Boo! Ha! A handful of my close friends did find out several days after I was diagnosed as my Mum had sent them a message, although she had asked them not to say anything until I was ready, as I was reluctant for her to tell anybody in the first place.

Once more and more people started to find out, there were messages, cards, presents and 'get well' wishes... one thing about being critically ill, is that a lot of people start to pop up who you haven't spoken to in years... people who you know weren't bothered about you before.. people who had treated you really badly.. so why were they bothered now?! But I'll post about that at a later date..

I don't know if there is a right or wrong way to go about telling your friends when you're critically or seriously ill. For me, this was the only way I could deal with telling people. If it happens to me all over again, honestly, I think I'll end up doing exactly the same thing and won't tell anybody until I feel like I'm ready to tell them, or I feel that they should know what is going on. I'm good at putting on a smile and acting like everything is okay. I don't want to put my friends in a situation where I know that they'll feel upset or scared for me. All those emotions that I went through when I was first diagnosed... the tears, the sleepless nights, the fears that I wouldn't see tomorrow... I didn't want them to feel the same way, which was why I held off telling them.

It's always going to be hard, no matter how you tell people.

The Bone Marrow Biopsy

Considering the amount of biopsies I've had done and that I still have to have done, (every 3 months for the next 3 years.) I haven't really mentioned them before now.. my first experience of a bone marrow biopsy was pretty soon after I was admitted... I cried the whole way through it, pretty hysterically, whilst holding tightly onto the nurse's hand by the bed and covering the white pillow case with my black mascara tears.

I listened to the doctor explaining to me how the biopsy procedure would go, how it would be performed, that they were hoping to get a specific diagnosis out of it, the possible risks.. essentially everything I needed to know. I signed the consent form after everything had been explained, but if I'm honest, I was such a mess that I hadn't really taken on board any of the information I'd just been told. I understood, but I didn't want to. I never really wanted to know how bad my cancer was, or that it was indeed cancer. I just wanted to curl up and for everything to be done and dusted. Just like that. Life back to normal... but it doesn't work like that.
To date, I've probably had around 9 or 10 biopsies... I had one when I was admitted, one after my first cycle of treatment, one after my second cycle of treatment, one after my third cycle of treatment and one after my fourth cycle of treatment and I've had several more biopsies since then. Initially I was having my biopsies under a local anaesthetic, which is the standard procedure... you have a couple of shots in the skin/tissue of your back and then a couple more deeper down.. the needle goes in, (around those nobbly bobbly bits you can feel on your lower back) right into the bone and then your marrow gets sucked out, with a bit of pushing and pulling. With the pushing and pulling and having the needle in your back in general, I experienced a lot of discomfort. The pain shot from my back, straight down my leg and it was a very weird, uncomfortable and persistent sensation, with sharp shots of pain popping up every now and then to add to the pain that was already there. It's really hard for me to accurately describe the pain I experience... but I wouldn't wish it on anybody. Sometimes it wasn't as bad, but other times it was just unbearable and I'd kick out without intending to and have to have my legs held down until the needle was out. The more times I had the biopsy, the more I anticipated the pain and the tenser I got beforehand which didn't help at all. The first couple of times, I felt so rough that I don't think I was fully aware of the pain. It does also depend on who's doing the procedure, as some doctors put more anaesthetic in than others... there is also the option of having gas and air, but that didn't really work for me. For the majority of my biopsies I was crying so much that I was a big mess of tears, snot and dribble, I couldn't really grasp the whole 'breathe in breathe out' technique, as well as squeezing my Mum's hand and trying not to concentrate on the pain... I wasn't very good at multitasking. It might be because of my lack of multitasking, or because my pain tolerance got progressively worse with each biopsy, that the last two I've actually had done under a general anaesthetic. I'm slightly torn by this, as it does mean I spend the majority of my morning in hospital, (arrive at 7am, then I get home by about 12/1ish) although I am fast asleep and pain free with no clue what's going on during the procedure.. however a part of me thinks it might be easier to grit my teeth and just cry my heart out for 20/30 minutes, then I can run off home straight afterwards.

Obviously, everyone's pain threshold is different.. you might be reading this about to go for your bone marrow biospy, go in, have it done and then come out thinking that I must be one of those people who cry when they tread on a lego brick. I've sat on the day unit waiting to go in and have seen people three times my age go in and out of the room for their biopsy like it was nothing. It totally depends on the person and mine have definitely gotten worse the more I've had done, but that is probably down to me working myself up over it days before I know it's going to happen. For the type of cancer I had (Acute Promyelocytic Leukaemia) now that I'm in remission, having a bone marrow biopsy done every three months is the easiest and most effective way of monitoring the cancer if it comes back, which is why I have the biopsy and bloods done and not just blood tests.

It may not be as bad as you think it will be, my first handful of biopsies, pain wise, were bearable.. they just got worse with time. As with all procedures, if you're worried about scarring, it isn't too noticeable... like a faded dot to dot along your lower back!

Acute Promyelocytic Leukaemia (APL) - Symptoms

Something I realised the other day was that I hadn't actually done a post about the signs and symptoms that come along with having Acute Promyelocytic Leukaemia, (which is shortened to APL or APML... let's be honest I don't know if anyone can actually pronounce the full name, haha!)

Before I was admitted into hospital last year in June, all I'd experienced was feeling completely run down and generally feeling rather rubbish. I'd been helping out the art teacher at the school where my Mum works, so I'd be up in art all morning breaking for lunch and then back up in the afternoon and finishing when my Mum was ready to go home. It was your average school day. But thinking back, even standing for too long caused me to feel worn out and by the end of the day I was completely drained. Mother nature was doing her monthly rounds and I was losing a lot more blood than usual, but I honestly didn't think anything of it. Standing for long periods of time was causing me to feel breathless and being on my feet for just one school day was completely wearing me out. Looking back, I probably should have realised something was wrong, but I didn't. I'd only just finished my second year at uni and had pulled several all nighters to get my work completed for my portfolio deadline, so I assumed I was over tired. I'd also had a persistent headache/ sore throat, which is why I was sent to A&E to begin with because the doctor thought it was a nasty case of tonsillitis.

I was given a lot of information and booklets to read in hospital once I'd been diagnosed and admitted. Once I'd read the basics, (I didn't read all of it and I still haven't. To me cancer was cancer and I didn't really want to know how bad it was, which is also why I never asked many questions.) But once I had read the basics, it all started to fall into place and I understood.

'The signs and symptoms seen most often in APL are:

Anaemia (lack of haemoglobin), causing:
- Fatigue and limited capacity for exercise.
- Breathlessness on exertion.

Low platelet counts and low clotting factors, causing:
- Bruising within the skin.
- Bleeding from mucous membranes (e.g. gums), from wounds or from the gut.
- Bleeding into the brain.

Low (normal) white cell counts, high numbers of abnormal cells and high metabolic rate, causing:
- Persistent infections.

- Fever - This is often present even in the absence of clear signs of infection.'

These are the main signs and symptoms printed out in my little APL booklet from Leukaemia and Lymphoma Research and when I read them I did do the whole "Oh yeah, that makes sense now" for the majority of the list. I had a lot of unexplained bruises on my legs that wouldn't go away, I'd been feeling overly tired doing the slightest thing, spitting up blood after brushing my teeth.. and my Mum had thrown a packet of sweets at me in the car, (I was supposed to catch them, but they'd hit me smack bang on the head which she actually found really funny, ha!) The corner of the packet had cut me, only the tiniest amount, but it took at least 20 minutes for it to stop bleeding completely.

Obviously, there is so much information online nowadays for symptoms and signs and all of that, but this is what it says in my little booklet, which is from a registered charity, so it is a reliable source. I'd always say though if you're concerned about anything, definitely go and get it checked out by your doctor.