September is blood cancer awareness month. To mark this important date, I wanted to shine a spotlight on the young people within the MPN community who each have their own story and journey to share. This month, I am therefore passing the blog baton to 12 young people from across the world who have very kindly agreed to share their experiences of being diagnosed and living with an MPN.
I am really excited to share this special collection of young patient stories with you. I have no doubt you’ll be touched reading their wise words and invaluable guidance, and I hope their profiles move you just as much as they moved me.
It is not always easy being one of the few young people in the MPN community. We have a long way to go before we fully understand how MPNs manifest in younger, as well as older, generations but I am hopeful this blog post represents a small step towards that effort.
Over the course of the 12 stories featured below, you’ll discover there is no single MPN journey. Everybody’s experiences differ just as much as they overlap, but the more information we share with each other, the richer our understanding will be of these complex and diverse diseases. I hope this is the start of us building a young MPN patient network in which we can all connect and support each other.
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Name: Abbi Age: 21 Diagnosis: PV
Story: I was diagnosed with Polycythaemia Vera in 2017 after almost a year of feeling ill, having migraines, feeling so tired and achy and never knowing why. If it wasn’t for the lovely GP, after so many others saying I was fine and it was anxiety, I never would have been diagnosed and had the support I do now.
Living with MPN has its good days and bad days, some days I feel as if I’m able to almost do things a normal 21 year old can do but the day after/other days I know I won’t be getting out of bed, I won’t be able to talk to anyone and I have to depend on family. Coming to terms with the fact I’m not going to be able to do as much as I’d like or do the things I’d planned to do with my life was incredibly challenging at first, however now I am beginning to understand and give my body the time it needs to recover and rest. I have come to terms with the fact that it’s okay if your life doesn’t go to plan as long as you’re doing all you can to be happy with the life you have been given it’s okay.
My symptoms range from day to day. For example, some days I won’t have certain symptoms but from most to least significant personally would be the tiredness, migraines/headaches, aching joints, itching skin, red hands/feet with pins and needles, blurred vision/confusion and nose bleeds.
I take several tablets daily; these include Hydroxycarbamide 3 x 500mg, Amitriptyline 10mg, Lansoprazole 30mg, Fexofenadine hydrochloride 180mg, Vitamin C 200mg and Co-codamol 100mg as and when needed. These are being reviewed soon however as my platelets have been rising still.
What I’d like to tell anyone who is being diagnosed with MPN is I understand the word cancer and MPN can be terrifying. I was very scared at first but this condition is manageable and as long as you take any medication/look after yourself and put yourself first, I promise you can still be happy and have a life! It just may not be what was planned but please don’t be hard on yourself and above all listen to your body and trust yourself if you aren’t feeling right that’s okay! Your doctors will just be a call/email away.
One other thing I’d like to say is allow the amazing charities out there to let you experience life! There’s no shame in going on the amazing trips or letting yourself have a little bit of light during the darker times. The charities are around to give to people who have cancers and as someone that still feels very guilty taking anything, you truly do deserve it and some of the experiences I have been given have changed my life and I will never forget them.
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Name: Alice Age: 26 Diagnosis: I was diagnosed with PV at the end of 2017
Story: I was rushed to hospital with an extremely bloated stomach, unable to sit or lie down without being in excruciating pain, even eating was impossible. After multiple blood tests and scans they found two blood clots in my portal vein, being 21 years old and a healthy person it sent alarm bells around the hospital as to why, where, and how I’d got the clots.
Flash forwards a few weeks later after being put on warfarin and blood tests, a bone marrow biopsy, a trip to London and a trip to Oxford, I was diagnosed with Polycythaemia Vera.
It’s now been almost 5 years since my diagnosis and life’s basically the same as it was before. We all have harder day than others, days my body aches and I don’t want to move, I’m exhausted – so tired that I can’t string a sentence together, but my life is basically normal.
I live life to the fullest (that my body can handle of course) I work, I go out with friends, I go on holiday, and I spend time in the gym. I just have to remind myself to take a step back and remember to rest!
Since being diagnosed my treatment has generally stayed the same. Warfarin and pegylated interferon every week, in the last year I managed to reduce my interferon to once every three months and I have changed from warfarin to apixaban.
Unfortunately, our cancers aren’t curable and hearing those words at the age of 21 really hurt but I am continuously monitored and thankfully stable.
Telling our stories ensures people read, learn and teach about MPNs.
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Name: Charlie Age: 27 Diagnosis: ET
Story: After noticing purpura (bleeding under the skin) on my legs, I underwent blood tests and genetic testing and was diagnosed with CAL-R positive ET at 25 years old. My platelets were over 1000 × 109/L at the time, but because of my age and lack of other risk factors for thrombosis, I didn’t have any treatment for a while. Over time, I developed more and more troublesome symptoms – purpura, bruising, severe headaches and changes to my vision – so my team and I decided it would be best to start treatment to lower my platelet count. I’ve been having weekly Peginterferon for just over a year and it has brought my platelet count to within normal range (390 × 109/L). My headaches and visual symptoms have improved but are still present, and I still bruise extremely easily (my legs are always covered in bruises!). The two other symptoms I experience regularly are fatigue and aching.
It’s important to say that everyone’s experience of having an MPN is different – they’re a rare group of conditions, especially in young people, and their presentation and impact varies from one individual to another. My key advice for young people with MPNs would be:
- Educate yourself – learn as much as you can about your condition. Ask your Haematology team every single question that pops into your head! Ask to be referred to a specialist for a second opinion. Contact fellow MPN-ers on the MPN Voice forum; more often than not, people with lived experience of MPNs know the most!
- Optimise your health – scrutinise your lifestyle and improve the things you can control, e.g. eat healthily, exercise as best as you can, and do it sooner rather than later!
- Listen to your body and take action – symptoms of MPNs, and side effects of treatment, can be non-specific and vague but they offer key insights into your MPN’s current state, and your body’s needs. If you’ve noticed a deterioration in your symptoms then get in touch with your team because this may be a sign your treatment needs to be reviewed. Also, if you’re absolutely exhausted one day and gentle exercise seems completely undoable, then then take yourself off to bed and don’t feel bad about it! Be kind to yourself.
Living with an MPN and navigating its uncertain course can be challenging, but take each day as it comes and keep your focus on the things in life you can control. Surround yourself with positive, supportive and loving people. Choose a career that brings you happiness and fulfilment. Spend your free time doing activities that fill you with joy! And remember… you’re not alone. We’re in this together.
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Name: Chelsey Age: 35 Diagnosis: I was diagnosed with ET but there are currently ongoing investigations as to whether I could have masked PV.
Story: I was diagnosed with ET in early 2021 after being referred to haematology by my GP as a result of high platelet results from a blood test.
My platelets were over 1000 and are pretty stubborn (at last count they were 858) so I have to inject the highest dose of interferon once a week and also take blood thinners as I’m high risk due to having a blood clot back in 2014 (although we can’t be sure whether this was caused by ET).
Sometimes I feel like I don’t have a chronic illness but some days can be a struggle with tiredness and lack of energy and I do suffer with headaches at times. As someone who is a worrier anyway I do worry about the future, including the possibility of having to change my medication and what side effects I may experience or whether my platelets will ever get down to a safe level. At the same time, it could be a lot worse and it’s helped me realise how precious life is so I try to make the most of things when I can, although that’s easier said than done.
It would be interesting to talk to anyone who has had a similar experience to me but managed to get their platelets down in the end. I think that would give me more hope and reassurance. There is a lot of support on the MPN forum for people going through something similar which helps. I’d advise anyone with an MPN that you can have a fairly normal life and that you’re not alone.
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Name: Christopher Age: 27 (25 when diagnosed) Diagnosis: PV
Story: I was treated at the hospital in March of 2020 for what appeared to be awful abdominal pain. A scan of my abdomen showed that I had a blood clot leading to my liver called Portal Vein Thrombosis. At the time, no one had any idea what was going on with me since I was way too young to be having clots. I was admitted to the hospital where I stayed for about a week doing blood tests and imaging daily. This all happened when Covid-19 started to break out, so visitors were not allowed in the hospital. That whole week, being alone in the hospital, was truly one of the scariest and most difficult situations I have been in. I felt alone and scared.
I was discharged with no answers but told to follow up care with a specialist. So, I did, and about a month later of weekly tests it was found that I had a Jak-2 mutation and was diagnosed with a MPN. I was devastated and confused, since I had no idea what a MPN was and why this was happening to me. I cried with my family, and I cried by myself for countless nights. It was difficult to accept, but over time I did and now I am proud of who I am through it all. It takes a strong person to go through the things we do. I followed up my care with a bone marrow biopsy and a new medication regimen to follow.
I have a lot of fatigue filled days. Some days I find myself ready to take on the world, and others I barely have enough energy to get out of bed. I find myself getting tired a lot easier, especially when going to the gym. I have chronic pains on the side of my abdomen from the enlarged spleen and liver I have, so twisting and turning can bring me to my knees in pain. I also find myself getting an itching sensation when taking a hot shower or going in a hot tub. My eyes have developed a yellow tint to them from my liver complications. I am not saying all of this to say how tough life is, because I love my life, but I do hope these symptoms can connect with some of you so you know that you aren’t alone in all of those feelings and sensations you have. It is common and okay to have these feelings, and I believe we are meant to overcome them and take charge of them, rather than being subdued by them!
I am not currently on any active chemotherapy, but I do take Eliquis daily to help prevent another blood clot from forming.
My advice to anyone who is young and finding this story to be very similar, is to be honest with your feelings. Don’t try to push this aside or to ignore it. Some days you will want to cry, some days you will feel on top of the world, and both of those days are okay to have. Don’t change who you are and what you do and keep living the life you have always wanted. You are not in charge of what other people think, or how they treat you after finding out, but you are in charge of how you treat others and yourself. So, treat yourself and others with empathy and compassion.
I also highly encourage to find mental help through therapy, if that is something you can do through insurance. I went weekly to therapy for months following my diagnosis and that helped me transition from a young adult suffering from cancer to a young strong man who is overcoming cancer.
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Name: Dana Age: 32 Diagnosis: I was originally diagnosed with ET in 2019 but was re-diagnosed with PV in 2020.
Story: I was diagnosed with Essential Thrombocythaemia in June 2019 after routine blood work by my primary care physician revealed very high platelet counts (they were around 800-900 at the time) and my haematologist confirmed the results. I then underwent JAK2 genetic testing and a bone marrow biopsy which later revealed I am positive for the JAK2 mutation. Shortly after my bone marrow biopsy in October 2019, I was re-diagnosed with Polycythaemia Vera in early 2020 after my haematocrit and haemoglobin also began to elevate far beyond normal limits during routine blood work.
Earlier in my life, I was diagnosed with Raynaud’s Disease and migraines with aura, which my physicians never looked into or completed blood work to reveal my elevated blood counts. Looking back on my paediatric records, I experienced elevated platelet counts since 1994. Living as a young person with an MPN is challenging in some ways since I appear to be healthy and active, but I sometimes struggle with debilitating fatigue, brain fog, and migraines with aura. I’m thankful for the support from my wonderful husband, Dan, who has been incredibly supportive and present throughout my MPN journey. He accompanied me to every therapeutic phlebotomy (before I started interferon medication), every haematologist visit, and every blood draw which is currently scheduled every two weeks. He also administers my Besremi injection, which for that I am so thankful! After six months on Besremi, my blood counts are finally stabilizing (with some kinks along the way), but I am grateful for the funding and availability of this medication in the United States to help my body stabilize and reduce my chances of a debilitating blood clot or cardiac event in the future.
If you are a young adult living with an MPN, I want to offer you hope, love, and support. Living with an MPN is just that – living. This is not a death sentence and you can and will live a long, fulfilling life full of happiness and success with proper education and treatment. I strongly encourage you to find a haematologist you trust and an MPN specialist who will work together to support your treatment goals. I opted to start medication early on to provide me with the best chance of longevity, so self-advocacy is key! There are many of us younger patients who are here to support one another with advice, encouragement, and companionship.
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Name: Gabor Age: 31 Diagnosis: PV (initially diagnosed as ET)
Story: I was diagnosed when I was a teenager, so my case feels unusual compared to that of most other MPN patients (who tend to be a lot older). Thankfully with aspirin and regular venesections my symptoms are minimal, so I can lead a completely normal life for now (and regularly forget I have an MPN).
If you are newly diagnosed, don’t be disheartened; you may find the same too. Try to attend some patient forums; they’re great for meeting other young MPN patients (it’s how I met Alice too!) and you may find the information within them useful and reassuring. I found staying informed was the best way to tackle my MPN.
Finally, if you feel a chat would be useful, feel free to reach out to me via Alice.
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Name: Hamzah Age: 24 Diagnosis: ET
Story: Up until a few years ago, I was always an extremely energetic person. I was rarely ever tired, and had a very hectic schedule, commuting via car for up to 3 hours per day for my first 2 years of university (Medicine). I managed this very easily at the time.
Once I started 3rd year of Medical School (September 2019), I was placed much closer to home, with a far shorter and easier commute. However, I noticed I started to feel a lot more tired, despite this expected decrease in commute distance and duration. I spoke to my GP and requested a fatigue screening panel of blood tests.
It was then noticed that I had a platelet count of 900. At the time, my clinical knowledge of medicine wasn’t great, as I was only 2-3 weeks into my clinical placements, so this didn’t mean a great deal to me. My GP thought initially it could be due to an acute illness, as platelets can sometimes go up due to any type of inflammation in the body. We proceeded to investigate this further, with a couple more blood tests in the upcoming weeks and months. However, the platelets seemed to be creeping further up, reaching up to 1200 by February 2020. I had private medical insurance at the time, so we decided to make use of this, and see a haematologist, who initially requested various genetic tests, including JAK2 and CALR. The diagnosis was quickly made of essential thrombocythaemia. Meanwhile, my symptoms of fatigue and muscle aches, among other things, were getting worse. At the time, it wasn’t really explained to me that this is a form of blood cancer, but just something I would have to deal with.
Shortly afterwards, we went into lockdown, and I was then referred under the 2 week wait suspected cancer pathway by my GP to the NHS haematology team, as I had a persistent bleed during the first week of lockdown. This was the first sign I had of an actual vascular event. My NHS haematologist explained the diagnosis in a lot more detail, and by June 2020, my platelet count was around 1400, so we were deciding on the next steps. I decided to take a year out of university for the academic year of 2020-21, due to the potential of having to start interferon.
It was at this point that ET really started to have an effect on my life. I was always someone who didn’t really make a big deal out of any issues I had; I would normally just crack on with whatever needed doing. But I found myself having to cancel outings with family such as cousins, who didn’t actually know about my diagnosis.
The main problem I have had, is that people think that I look okay, therefore there is nothing wrong with me. This is likely due to the aforementioned fact of me not making a big deal out of anything. Fatigue is an invisible symptom, and is arguably one of the most frustrating symptoms due to nobody understanding fully what you are going through. This is particularly annoying when you are young, as there is an opinion in society that you should be full of energy as a youngster.
There is no real way to treat fatigue, and I have never been able to alleviate it completely. However, I have found that I cope best with my fatigue is by being realistic with what I can achieve over the course of a day/week. Keeping a good sleep hygiene schedule and also doing mild-moderate intensity exercise is good, as it can induce a so-called physiological state of tiredness in the body, which I find helps me sleep better.
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Name: Lauren Age: 33 Diagnosis: ET – although originally in the year 2000 I was told I had ‘Myeloproliferative Disorder Polycythaemia Rubra Vera’ a few years ago my nurse said it is really ET as predominantly I have a high platelet count. I am also Jak2+. The test for this was done when it became available when I was in my 20s.
Story: I was first diagnosed with ET in the year 2000, when I was 10. I was originally admitted to Rochdale infirmary with stomach pain and fatigue. They thought I had constipation but when they did blood tests, they came back extremely high. They told my mum that they had gone wrong so had to do them again! When they eventually realised those were my blood results (platelets over 2000!) and my spleen was two and a half times the size of an adult spleen, I was taken under the care of a consultant at Pendlebury Children’s Hospital in Manchester. This is where Doctor (however I have since learnt he is now Professor) Rob Wynn diagnosed me with the rare blood disorder – back then it wasn’t classified as a cancer and I do think that was much better in many ways! I have fond memories of my doctor and the ward there, as up until around 15/16 years old, I did have some stays in hospital when my spleen was playing up and I was in pain. As it was super rare to be so young, and doctors hadn’t heard of many young children having this condition, my blood was sent to London universities to study and journals were written about it… I thought this was pretty cool and at least it is something interesting about myself! I had my last bone marrow biopsy at the age of 16. I haven’t had one since then and I do have to admit I’m not looking forward to the day I do have to have another!
The condition hasn’t affected me a great deal really. I had spleen pain as a child and still do sometimes as an adult, but this is manageable. In year 10 I had my appendix out and unfortunately this caused a large blood clot to develop and this set me back a bit as I was off school for a couple of months and had to have a phased return. However, after sitting my GCSEs and getting two As and a B in my A-levels, I went to Lancaster University to study Psychology in Education and then on to do a PGCE to become a primary school teacher. I have now done this full time for 11 years. In the middle of my career, in 2015, I gave birth to my now 6 year old daughter. The pregnancy was a breeze, no problems at all! My platelets even came down to around 500! I had some minor complications during the birth, with some excessive bleeding, but I made it up quickly and didn’t need a blood transfusion. So all in all, it went well! I went back to work full time when my daughter was five months old.
Over the years I have been on aspirin and interferon (plus medication for migraine), however, after the last course of interferon in my twenties, I decided to come off it as I felt worse with it than without! More recently, my consultant, my nurse and myself have considered other medications (mainly due to fatigue), however we feel this is not necessary yet and that I just have to make a few life adjustments – mainly slow down and try and have rest days! I feel that perhaps as I have got older, and work more stressful (I have moved up the ladder to management), I am more tired than I perhaps was and I do have to be mindful of that. I shielded during the pandemic, so (like for so many people), that was a very stressful time too.
I think the main thing I would say to other young people with an MPN is that you can live your life to the full. Just because they re-classified it as a type of cancer in 2013 doesn’t mean it is that bad. I didn’t even find out until 2018 when I asked my nurse! No one had told me they reclassified it. As I had moved from the children’s hospital to the adult hospital, and then between consultants, everyone presumed I knew! However, I do feel this changes your outlook on things. I have perhaps underplayed the condition in the past (and perhaps pre covid), but a diagnosis of an MPN is in no way a game changer! The word ‘cancer’ hasn’t changed what the condition is. I still went to university, got a career and had a family. My platelets do fluctuate between 700 and 1000 but this doesn’t really affect how I feel. I admit, I need to rest more now than I once did, but maybe that’s because I’m in my 30s now!
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Name: Maëlla Roué Age: 35 Diagnosis: ET
Story: I was diagnosed in June 2019. I had been feeling terrible for a while, feeling ill with inflammations for months. I had asked my GP to run full blood tests and that’s where they saw the platelets level not to a healthy level. After a few more blood checks, I was referred to the haematology department at the Mater Hospital in Dublin, Ireland, where they ran a few more tests including bone marrow biopsy which confirmed the diagnosis.
It’s an everyday challenge, roller coaster, and it has its good parts but also its bad parts. Most days when I wake up, I already know how the day will go. If I feel unwell or if I feel in good form, it’s all very predictable. My symptoms are sights migraines, whole body inflamed, fatigue, cracked skin, pain in the bones and joints, sometimes night sweat. It’s sometimes hard to stay positive, but I feel lucky that I am surrounded by great people in my life that help me be myself and be stronger! I truly believe it has made me stronger and wiser. It had me quit smoking. It had me listen to my body and taking better care of myself. It has given me the opportunity to do things for others (charity work for MPN voice but also for underprivileged communities here in Ireland) I started off on Aspirin but have been changed to Anagrelide 2mg/day for the past 13 months.
I feel lucky that this has not stopped me from having a professional and personal life. I have a job that supports me no matter what, and I wish that same luck to anybody!
If I can give advice to people newly diagnosed, it’s a long journey, take it day by day, listen to yourself, always try to see a positive side of what this has brought into your life. Be open and honest (if you can) with your environment, they will be able to help you get your days easier. Don’t hesitate to go see a psychologist, this may really help you get stronger mentally. And when you’re stronger mentally, it’s easier on the day to day. People won’t always understand why you’re not able to get up in the morning. If you explain them, this might give them a chance to be more accommodating to you. MPN Voice has really changed a lot of things in my journey. Use this resource/community. You will find it difficult to find people that truly understand how you feel and might feel isolated.
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Name: Maya Age: 29 Diagnosis: ET
Story: I was diagnosed with Essential Thrombocythemia in 2019. It started when I had migraines with aura come out of nowhere. After all my years of being “healthy” I never dealt with migraines so when they started to happen out of the blue, it concerned me. I first was given medicine to try and help the migraines, but no medicines were working.
After trying a few medications, they started to run blood tests and saw my platelets were higher than normal. I went to John Hopkins for additional testing as well. I was then diagnosed with ET.
After being diagnosed, they started me on a baby aspirin to take once a day. When I do get migraines, I am be out for the whole day. I feel nauseous and at times can throw up. The only thing I can do is lie in bed in the dark and wait for the migraine to be gone. Even after the aura goes away I still feel absolutely awful the remainder of the day and don’t feel “normal” until the following day.
When I was first diagnosed I tried to play it off as my haematologist told me it is a low grade blood disorder. I am now really wanting to pay attention more to my diet and how I can be proactive with exercise and incorporating more yoga. My diet has always been relatively healthy as Mediterranean food is my favourite, but I want to get a lot more serious about it and cut out red meat and dairy entirely (which really sucks because I am a huge foodie and ice cream is my favourite).
I don’t tell a lot of people about my disorder as I don’t want them to feel sorry for me. And I guess it still hurts to say I have blood cancer as well. I am wanting to share my experience so that it not only helps therapeutically but hopefully can help others as well. I want to live a somewhat normal life even having a blood disorder.
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Name: Megan Age: 24 Diagnosis: ET
I was diagnosed with ET in October 2017 after 6 months of being unwell in my first year at university. I had been unwell with multiple viral infections, tonsillitis, unexplained weight loss, fatigue and excruciating head pain 24 hrs a day. Most of my symptoms I put down to being a 1st year university student but I was very wrong. Many GPs misdiagnosed me as simply a stressed student. In fact, I wasn’t stressed at all, I had blood clots all over my brain and was lucky I hadn’t had a stroke. Through investigation for the reason for my blood clots, my high platelet count of 650k was found and thus, followed a diagnosis of ET.
It was all very scary at first and I remember hearing incurable louder than anything. I also found it really isolating being one of the only young patients after being diagnosed aged 19 and not anyone seemingly to relate to. But I can honestly say that with a positive mindset, 5 years on, I live a really good life even with ET and don’t let it stop me from travelling, working and socialising. ET did however majorly change my career path, as I was training to be a pilot when I was diagnosed and unfortunately now my medical is invalid due me being on certain medications which are banned by the Civil Aviation Authority. Nonetheless I have graduated from university now with both an undergraduate and a Masters degree when I’m very proud of. Although I am not flying anymore, ET is the reason I found a job in the aviation industry in an area which I had never imagined I would work in and which I am very passionate about. I can honestly say that I really think everything in life happens for a reason.
I am currently on 10 tablets a day including aspirin, warfarin and blood pressure medication, in addition to peg- interferon injections. I also find the injection of peg-interferon once every 4 weeks is very manageable. My main symptoms now are chronic fatigue and nausea which can be frustrating at times. But I have come to accept that sometimes, I need to slow down and respect my diagnosis, whilst still ensuring that I don’t let ET take over my life. I find that my chronic fatigue has caused me to be less active and gain weight over time and this has been difficult to manage and getting into a healthy fitness routine has been difficult. I also experience head pain on an almost daily basis due to the blood clots on my brain which will never fully dissolve and I manage this with prescribed pain medication.
So what would I like to say to any young person with ET? You are in fact stronger than you even know. Try to take the glass half full approach to everything life throws at you. Respect your diagnosis and welcome any help that you are offered to make your life a bit easier (e.g. financial grants from charities, lifts to appointments, wheelchair assistance at airports, blue badge etc). There is no shame in admitting you live with cancer, it’s actually very admirable. It is all very scary at first but just take it one day at a time. My diagnosis has given me a new perspective on life at such a young age and I’m very conscious of the fact that life is very short and we have to make the best of it while we are still here. Don’t let ET get in the way of what you want to achieve or be, because believe me, you are so much stronger than you even know.
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We’d like to extend a huge thank you to every young person featured in this blog who took the time to write and submit their story to us. If you’d like to get in touch with Alice about any of her blog posts to date, you can contact her by email at: info@mpnvoice.org.uk
