Today is World Blood Cancer Day
This article was written by the charity Blood Cancer UK (Gibraltar Branch) to mark World Blood Cancer Day (May 28) and raise awareness of the diseases that have had such a powerful impact on their lives.
Today marks World Blood Cancer Day, we aim to raise awareness on this day of the many types of blood cancer in the hope that we will soon find a cure for all blood cancers.
There are many people in Gibraltar who have suffered from a blood cancer or are living with the disease and, sadly, there are many who have tragically succumbed to it.
Whilst there are over 200 types of blood cancers they mainly fall under the umbrella of Leukaemia, Lymphoma, Myeloma, Myelodysplastic Syndromes (MDS) and Myeloproliferative Neoplasms (MPN).
Blood Cancer UK was founded in 1960 and has invested over £500million into research.
They are currently funding over 360 projects which are all looking for the next breakthrough.
They have been at the forefront of creating new and less invasive treatments for blood cancers with recent groundbreaking advances in the use of immunotherapy and blocking proteins in Leukaemia patients, both treatments which are widely used and are currently saving many lives.
Blood Cancer UK Gibraltar Branch members have all been affected by blood cancer. Whether it is a parent, a sibling or a grandchild, we have seen the cruel effects the disease, and subsequently the treatment, has had on our loved ones. Our aim today is to raise awareness of the symptoms to help with early diagnosis.
If you have any of the following symptoms, please contact your GP:
● Unexplained weight loss
● Bruising or bleeding that is unexplained
● Lumps or swellings
● Shortness of breath
● Drenching night sweats
● Persistent or recurrent infections
● Unexplained Fever
● Rash or itchy skin
● Pain in your bones, joints or abdomen
● Tiredness
● Paleness
As part of our awareness and fundraising campaign, we hold various charity events throughout the year which are supported generously by the public. We held our annual flag day this past Friday and on Wednesday, May 29, we will be holiding our annual Walk starting from Commonwealth Park at 6.30 so please come and join in.
Some of our supporters have bravely shared their harrowing journey with us.
Walk to the Beat
Blood Cancer UK (Gibraltar Branch) will holding a charity walk called ‘Walk to the Beat’ on Wednesday, May 29 at Commonwealth Park.
The event will begin at 6.30pm with a £5 fee for registration.
‘My story’
by Andy Watson
In July 2018, whilst seeing the hematologist regarding a totally unrelated blood test, he noticed elevated levels in certain fields regarding my stats. He requested a second blood test which I undertook.
On my second visit to see him, I was shocked and horrified to learn that I most likely had a condition called a ‘Myeloproliferative Neoplasm’ (MPN), namely Polycythemia Vera, (PV). He explained it was basically a type of blood cancer. He didn’t mince his words either.
Apparently I produce far too many red blood cells, white cells and platelets. He explained that a faulty gene had mutated, causing the body to produce too many blood cells and, if left untreated, would lead to a substantial thickening of the blood, which then causes serious strokes and heart attacks.
The condition is permanent and currently incurable. The hematologist went on to say it was, however, manageable.
When he told me it was a shock, I felt as if I had been punched in the stomach and had all the wind knocked out of me. I had absolutely no idea how I was I going to try to explain this to my wife and my daughters. I had thought it was just a routine test to rule out something completely unrelated. When I had first entered his office I didn’t even know I was sick!
A bone marrow biopsy soon followed to confirm the diagnosis, the samples were sent to both Spain and the UK and both returned a positive result. To say the bone marrow biopsy is not a pleasant experience is an understatement!
A lot of venesections/ phlebotomies in short succession followed in order to quickly reduce my excessive and dangerous levels of red and white blood cells and bring them in line with acceptable levels.
This, in turn, had a secondary effect as when blood is removed from the body it also removes vitamins and nutrients. Your iron levels fall sharply as your body tries to replenish the blood that has been removed. This has the effect of causing extreme fatigue.
The extreme fatigue can only be explained as a sudden feeling of extreme tiredness, as if you’ve run out of batteries. Your body has no energy and you feel that you can’t take another step. It can be brought on suddenly and without much warning.
When I had bouts of fatigue I would sometimes go to bed, have 8 hours of continuous sleep, and wake up the next morning so tired my eyes were sore.
I would need to take naps during the morning and afternoon then have 8 hrs of sleep at night and wake up tired again. I would spend days just sitting on the sofa unable to leave the house. This would all repeat again the next day.
When I explained my symptoms to my hematologist regarding the extreme fatigue I was experiencing, I was put on a course of chemotherapy tablets, which are commonly used to treat PV.
This medication is designed to slow down the production of all blood cells within the body and thus reduce the need for venesections or drawing blood.
This, in my case, had the terrible side effect of causing excruciating knee joint pain. So the treatment was stopped.
We tried this medication for a short period again a year later, following another bout of extreme fatigue and it had the exact same effect. This time my knee pain got so bad I had to use a walking stick and I could hardly walk any distance, it took 3 months to subside after stopping the medication.
Venesections or phlebotomies are similar to blood donations, where 450ml (nearly a pint) of blood is drawn from the body, only now it’s thrown away as, due to the diagnosis, it can no longer be used medically.
It was a bit soul-destroying for me as I was a volunteer blood donor here for nearly 28 years, although my condition is not related to my donations. However, luckily, my blood tests from the blood donations were still on record.
In the following years since diagnosis, I have either 5 or 6 pints of blood removed throughout each year.
I have since been put on another type of medication, which has taken 2 years to take effect, which consists of an self-administered injection to the stomach once a week. This medication is also designed to reduce the need to draw blood and thus reduce associated side effects.
I currently have a good tolerance to this medication and have not experienced any side effects to this medication. I have only had 2 pints out so far this year and it has also reduced some of the symptoms.
I now see a Professor in London each year. She is the leading authority in Blood Cancers in the UK and is closely following my progress. I also see my local GHA Hematologist every 4 to 6 weeks and undergo a blood test each time.
My knee joints always hurt, sometimes more, sometimes less, but at least I can walk fine.
A symptom I tend to have with frequency is shortness of breath, but I have accepted it as a common symptom and try to slow down and push on.
I also have an enlarged spleen which is another common symptom of PV. It is monitored and I have had it scanned three times so far, and it currently remains enlarged but stable.
My skin, especially my face, hands and feet, usually tend to be very red in colour due to the excessive concentration of red blood cells.
Other symptoms of PV have included night sweats, where you wake up in the middle of the night soaked in sweat (even in winter), but this symptom has decreased since taking the new medication.
There are other symptoms associated with PV, some of which are quite worrisome, but I have been fortunate not to have experienced them to date.
PV can sometimes progress to other forms of MPNs and other types of blood cancer, but it’s best not to think about it for now.
At first, when I was initially diagnosed, I had a huge thirst for information to try and make sense of my condition.
I used to scan the internet and obtain information from ‘Dr Google’ and other online forums, but this was a huge mistake, as it paints a bleak picture of the condition and life expectancy.
This erroneous information basically fills your head with the worst possible outlook, which just ends up causing stress and depression.
I try to get on with life as best as I can and try not to think about my condition, (sometimes I even forget I’m ill). I’m so lucky to have a supportive wife and family and believe in remaining very positive.
I’m also extremely grateful to all the members of the GHA whose care, dedication and treatment permits me to continue living a relatively normal life.
Surviving lymphoma
By Lian Camilleri
As a Stage 4 Hodgkin’s Lymphoma survivor, I know firsthand how critical it is to recognise the early symptoms of cancer, even when they seem insignificant.
When I think back, I’d say that my earliest symptom was a burning rash on my legs that caused a sensation like being burnt from the inside out.
At the time, I had a three-year-old child and I chalked up my constant exhaustion to the demands of motherhood. Little did I know, this fatigue was also an early warning sign.
As my condition progressed and my symptoms worsened, I began catching every virus and infection my daughter brought home, something which kids of nursery age do pretty often.
In addition to this, I had noticed that my breathing difficulties, which I attributed to my asthma, also became more frequent. However, despite visiting multiple doctors, I was repeatedly told that my symptoms were minor ailments.
I was just prescribed medication for a cold or for my asthma and sent on my way.
Looking in retrospect I still find it incomprehensible that not a single doctor had sent me for an x-ray, even after I visited extremely often and had been told that they’d never heard a chest worse than mine.
However, although I knew something was off, at the age of 30, I can honestly say that having cancer would have been the last thing on my mind.
Thankfully, as fate would have it, Dr. Nadine Perez had recently started working at the GHA and happened to be the only GP with available appointments. I thank my lucky stars for that day.
Dr Perez being the incredibly thorough and professional doctor she is, expressed concern over my severe chest congestion and strange persistent cough and ordered a chest x-ray.
The x-ray she requested revealed large, abnormal shadows on my lungs, and were the pivotal point leading to my diagnosis of Stage 4 Hodgkin’s Lymphoma.
I really cannot emphasise enough the importance of listening to your own body and visiting your GP when you feel unwell and have any concerns. Early detection is key.
If you experience unusual symptoms like persistent rashes, unexplained fatigue, frequent infections or a persistent or strange cough, seek medical advice promptly. Your vigilance could make all the difference.
Chronic Lymphocytic Leukaemia
By Alan Gordon
I was diagnosed with Chronic Lymphocytic Leukaemia (CLL) of the B-cells in June 2017.
During a routine blood test, the GP noticed a high load of white blood cells and she referred me to the Consultant Haematologist in St Bernard’s.
After further blood analysis, a bone marrow biopsy & a whole body CT scan, the diagnosis was confirmed.
I was placed on a Watch & Wait regime & would have clinical reviews by the Haematologist every three or four months.
During the Covid crisis, I was warned to be extra vigilant, as my condition made me very vulnerable to contracting the disease.
Sometime in late 2020, my blood readings were starting to change. In December, I had a blood test to determine whether the CLL had mutated, but the results showed that it had not.
During the first few months of 2021, tests were beginning to show that the disease was becoming active. I started treatment, with Ibrutinib, in March 2021.
Unfortunately, I developed an autoimmune Haemolytic Anaemia and the treatment was stopped.
From March to June 2021, I was transfused 35 units of blood. This, together with the transfused treatments I was receiving, necessitated my having a Port-a-Cath surgically inserted in June 2021, which I still have & use when needed.
I received several treatments, but only after taking a course of very high doses of steroids was the Haemolytic Anaemia brought under control & cured. I was on steroids until November 2021.
During all this time, I would spend spells in hospital, in CCU & in the ward.
As I was getting better, despite taking every care, I very regrettably contracted Covid in December 2021.
I now understood why, at the beginning of the pandemic crisis, I was repeatedly warned to be careful not to get myself to be infected.
I was very ill indeed. I spent three weeks in hospital in isolation and, although I was not intubated, the process of assisted ventilation to which I was submitted was extremely arduous.
In the end, I was able to leave hospital on Christmas Eve. The doctors made it very clear that what saved my life was that I was fully vaccinated against Covid, against the flu & against pneumonia – from the advice I have received from doctors, from the literature I have read, & from my own experience, I have realised that it is imperative that sufferers of blood cancers are fully vaccinated.
My condition again started to deteriorate. At the beginning of 2022, my doctor decided to give me a combined treatment of a two drugs, the first, intravenous Obinutuzumab, to inhibit CD20 (a protein on the B-cells which increase to abnormal amounts in leukaemia).
The other drug was Venetoclax, taken orally in tablet form, which targets another protein in the blood cell (BCL-2, which also increases abnormally in leukaemia, allowing cancerous blood cells to survive).
The combination of these two drugs, to target the overload of two proteins in the blood cells which allows cancerous cells to prosper, is quite a new type of treatment.
I have been the first patient in Gibraltar to receive this innovative treatment.
The first doses of Obinutuzumab were administered under close medical supervision in CCU and I continued having infusions of the drug every 2 weeks for 6 months. I had a few hiccups with the first couple of treatments but, in the end, I was able to tolerate the drug very well.
The Venetoclax tablets I took for one whole year at home & had no trouble with them at all.
I was on treatment from March 2022 to March 2023. At the end of the treatment, its effects were assessed by a CT scan and a series of blood tests and, in May 2023, I was given the results.
The CT showed that the lymph nodes throughout my body & the spleen had returned to a normal size. The blood values were also normal. The readings of the test for the Measurable Residual Disease(MRD) were negative, no diseased blood cells were detected. My body showed no signs of the disease.
The treatment had been successful, but (a very big BUT) for how long will I be able to sustain this? So far, things continue to look positive, I am reviewed every three months. I am thankful that I continue to enjoy life and the company of my loved ones and friends. For how long?
My advice to any sufferer is to look at everything positively, life with cancer can be just as beautiful.
Very importantly, follow the advice of doctors to the letter.
We are blessed with the services of the Haematologist at St Bernard’s, Dr Pepe Duran. Not only is he a very competent doctor, he’s also caring, compassionate and dedicated to the extreme.
In addition, he is very ably supported by a wonderful team of scientists, nurses and pharmacists in the Medical Investigation Unit, in the Pathology Laboratory and in the Chemotherapy Unit – a superb combination of professionals whose sole aim is the well-being of patients, and to whom I am exceptionally grateful.