I was diagnosed with a rare form of cancer in 2021, following complications with a renal transplant. In early transplantation patients (kidney, pancreas, heart, lungs, etc.) being on immunosuppression means maintaining organ function—also referred to as graft function. However, having an immune system that is suppressed means that common viruses or bacteria can lead to infections. One of these viruses is Epstein-Barr Virus (EBV), named after the scientists who were first to isolate and study it. EBV is very common in the population, with about 95% people having been exposed to it. Usually spread through contact with saliva, and affectionately named the “kissing virus”, it spreads amounts young people, thus leading to the majority of adults with EBV DNA left in cells. In healthy functioning immune systems, EBV remains controlled, but in patients with compromised immune responses, the virus can reactivate. I did not have EBV exposure as adolescent, probably one of the disadvantages of not liking human contact, which means that my immune system did not create antibodies for EBV management.
In most cases however, EBV reactivation causes mononucleosis, typically with tonsillitis or similar symptoms, fevers, night sweats and swollen lymph nodes, to name a few. EBV infects lymphocyte B-cells (a specific type of white blood cell) in the immune system. In few cases, EBV will cause changes to B-cell DNA, which alters the way how these cells are regulated and replicated. Typically, lymphocytes are produced in the bone marrow, which in some cancers is where the issue is. However, in my case, EBV-infected B-cells induce their rapid proliferation (multiply rapidly), with symptoms resembling those of primary EBV infection. The condition is appropriately named Post-transplant lymphoproliferative disorders, as it affects the lymph system (where the immune cells are) and is characterised by the uncontrolled and abnormal growth of immune cells (T- or B-cells).
What is chemotherapy?
So how do you target these abnormal cells? Chemotherapy or immunochemotherapy is a therapeutic treatment aimed to destroy cancer cells, otherwise cells that have been corrupted from the normal function. The term cancer receives several assumed definitions though the media and negative connotations, but as the soon as we accept that it refers to our own cells, which are undergoing or have undergone changes induced from lifestyle choices or medications, the quicker we will be to confront it with fewer worries or anxiety and stress. A cancer diagnosis is of course difficult to deal with, as there is the constant worry of life expectancy and change. But, since cancer is effectively a persons’ unique condition, it is difficult to generalise or think one solution in treatment affects everyone equally. Now, there are some great advances in personal medicines, but that’s a topic for another day.
In most cancers, it is best to treat with several anti-cancer drugs. These drugs have a certain function—to kill cancer cells. Another type are immunotherapy medicines, which are not directly cancer-killing, thus not chemotherapy. Instead, these assist healthy immune cells and guide them to specific cells using antibodies. Antibodies act as tags that are made to bind to target cells and guide the immune response. Think of it as cleaning process, the cytotoxic drugs first sweep indiscriminately, while the immunotherapy ensures that the system remains clean for a longer time. This is a matter of days for the chemo drugs, while some immunotherapy drugs can remain in the system for months, but again, this depends on the drug, the dose and the patient. And it’s really a a cocktail of beauty, with fundamental biology being used against the body, for a good cause.
Why do we feel the way we do after chemotherapy?
Well, it’s difficult to summarise this from the patient view, because again, everyone is different and thus will react differently. But it’s fascinating when we look at the biology. Let’s look at a common lymphoma therapy called R-CHOP. This is a immunochemotherapy, which uses five drugs to combat the blood cancer. Most of these chemo drugs target DNA replication while cells are dividing, either by binding to DNA-replication components, which is useful because high-grade lymphoma characteristically is fast-dividing. But, there are several other cells in the body that divide rapidly, for instance hair bud cells (why some patients lose some or all hair), skin cells (why protection from UV is important) and digestion system cells (including mouth, stomach and intestine). Some patients report that chemo drugs have a smell or a taste, but in fact that is the body being more receptive to different smells and tastes because the normal canvas of cells that line these organs has changed. And it’s very disruptive when it comes to patient mental health, as the entry ways to food, one of life’s comforts, becomes altered. But I believe by understanding the mechanisms of action of these drugs, we can take a proactive approach to managing their side effects. Bear in mind that I reflect on this based on my personal experience and training as a biochemist, so by no means are these effective treatments and while I recommend taking some of the measures to manage chemotherapy symptoms, I encourage all patients to keep communication with their oncology/haematologist consultants or general doctors and nurses.
Unlocking the secret
The following sections are tips and tricks that I have found to be helpful while receiving chemotherapy. These include my own observations and understanding of human metabolism to activities that can be done to alleviate the side-effects. Bear in mind that there will be individuals who may feel differently than others, so this list is not exhaustive, but intended to help guide your own observations when leading a healthy lifestyle.
The first on the list is all about lifestyle and what to expect. Let’s tackle it right away: we will feel tired, exhausted, drained, fatigued, emotional, and desperate. All these are well identified with varying degree amongst individuals and perfectly normal to experience. Some people may feel these for the short-term, while others will experience these symptoms for longer times. It is best to use your own limitations and observations as guiding points when dealing with your condition, and while it may be good to look for help from others, remember that it’s your body to look after first. For feeling tired, it’s about moderation. Do things that you want when you feel capable of doing them. If you feel distressed, take time off and practice breathing exercises, listen to music, walk around, maybe get some fresh air. Cooler air has more oxygen available, so make use of those early mornings or cooler evenings. Though remember to keep warm!
Mouth hygiene also important here, as I think the main reason why we get so frustrated is because of the immediate effects that comes from chemotherapy. I experience sickness and nausea at each cycle, which slowly goes away in the days after. A good tip I received from a medical doctor was to rinse the mouth every hour with some water—doesn’t have to be with mouthwash or toothpaste. A quick rinse helps to discard loose foods and saliva. Washing the teeth every time after a meal is also very good as it helps against mouth soreness. This is because mouth bacteria may have the chance to replicate more when the body is undergoing changes due to thinning of the mouth lining and being immunosuppressed. The first cycle I didn’t have this bit of advice, and I resulted in having very dry mouth with painful soreness around the saliva glands (in the cheeks). However, it is best to wait at leat 30 minutes before brushing after meal, this is at least some time for the mouth bacteria to do their jobs. In addition, mouthwash is a great tool, but try to find some that are zero-alcohol. Toothpaste is also very important in choice; some people are sensitive to sodium lauryl sulfate (SLS), which is common in most toothpastes. When my mouth is sensitive, I find that this chemical adds to the soreness. I now choose toothpastes that don’t have this, albeit sometimes more expensive (I use Sensodyne Tooth Repair), it helps with overall mouth hygiene while not causing any pain. Keep the entryway for food in good order and you will see differences in the quality of eating. Also keep your toothbrush clean and aim to change it every 3 months.
Protection from the sun
Skin cells are very delicate during treatment, so make sure you wear sun protection when going outside. But make sure the skin remains hydrated, so a good moisturiser should also help you keep the sensitive skin healthy. Also, don’t forget about the hands, especially during the winter months. While this may be more likely to be talked about in relation to preventing skin complications, it is also about preventing cuts to the skin, which can cause pathogens to enter the bloodstream. Some soaps can make hands feel worse, so I always recommend sensitive skin alternatives, such as Dermol 500 Lotion (hand wash soap substitute) or Epaderm ointment which can be used to moisturise the skin. It’s also worth keeping an eye out for sensitive skin and consulting with your doctors.
Exercise and Movement
It’s important to keep active, whether this is slow walking or doing some work on the side. This is to help overall body function and keep all organs oxygenated. But don’t over do it, its important to measure how much you are capable of doing. Talk with your doctor about your intentions before working out an exercise plan.
Diet and Nutrition
It is vital to keep a healthy diet, but a few treats every cycle are okay. However, I would recommend any takeaway or fast-foods to be avoided until after your first blood screening during the cycle. This is because it will indicate how many white blood cells are in your system. Not enough white blood cells may cause digestion problems, especially since healthy gut bacteria may struggle to be controlled and increase in number, which then can lead to infections. This can in turn result in upset from eating foods from the outside, or those that may be more difficult to digest because of greater content of protein, fats and oils, and carbohydrates. Food hygiene is also somewhat of a concern when eating from the outside, but any restaurant should pass a health screening by the government (this is UK standards, and you should check with the standards in your country), so check the restaurant websites. Street food on this note should be avoided, even if you feel well enough. Again though, common sense plays a role here, and having cancer or receiving treatment shouldn’t stop you from doing what you like. But remember to give your body time to recover.
Antioxidants & Vitamin C
Antioxidants help against free radicals. Free radicals are atoms that have a unpaired electrons making them highly chemically reactive. Imagine these as free mains electricity wires that have running energy through them and are not connected to any device. Touching them would give you an electric shock! By ingesting antioxidants, it basically helps to neutralise these free radicals, which in turn cannot damage other molecules. Try blueberries, these have the greatest content of antioxidants.
Avoiding high acidity foods is good when the mouth is sensitive, but giving a few fruits ago might even help to stimulate saliva production and you don’t need to use artificial saliva sprays, which taste awful. Oranges, raspberries, blackberries, limes, apples, pineapples are all good choices, but make sure you can eat them as well. There’s also a wide variety of vegetables that can help such as broccoli or cauliflower. This is a long term solution though to keep a healthy body, and be patient with the results.
Too healthy for you? Try pastries with fruits, no problem. Remember that is about body, mind and self-satisfaction. These are the key concepts to accept when having chemotherapy.
Keep well hydrated, this helps your cells be functional and keep your body healthy while taking all medicines during chemotherapy.
There is some confusion out there that sugar keeps cancer cells alive, but this is from the concept that cancer cells are very metabolically active, through the consumption of sugars in the body (glucose). This is because instead of sugars metabolised to go into cellular respiration (glycolysis) and production of metabolites, in some cases this process is bypassed and sugar is broken down to create lactate (one of the indicators of cancer function in aerobic and anaerobic environments; this is known as the Warburg Effect). I personally don’t believe that this is something to worry about directly, but sugar intake is important to control. This is because som cancer treatments increase blood sugar (this is sugar available in the bloodstream), which can lead to complications with diabetes. So important to note, but not something that should cause concern or immediate worry. Again, discuss with your medical team for advice and instruction.
Living with Cancer
It’s all about balance and knowing your limits. Avoiding public spaces during the first week, as this is the time we can expect that our immune systems are most affected (drop in white blood cells). But again, I don’t want to say much here because it depends on each individual, but regardless of strength in yourself, remember that the body is undergoing changes underneath; some of these can be felt while others may not. This goes with the previous point, and keep taking your medicines even if you don’t feel bad. These either help to calm down the effects of chemotherapy or protect the body against more severe side-effects, such as declining level of white blood cells, which can cause neutropenia (a condition when white blood cells fall below the normal range). Your doctor may prescribe granulocyte-colony stimulating factors (GCSF; I take Filgrastrim), which are injections to help the bone marrow produce more white blood cells. If red blood cells are the concern, from haemoglobin measurements, these injections are called erythropoiesis simulating agents (or ESAs). I haven’t had the latter yet, but the GCSF give me bone pain, especially the pelvic area, where the bone marrow is. Be careful when taking painkillers to alleviate the pain as these can mask the onset of fever. However, these injections can also cause body temperature to increase (based on my own observations and reading of possible side-effects because of the mechanism of action), so it is important to also expect the body to respond to these medicines, as inflammation is also a possible side-effect. A temperature is okay and not to be a worry when the body is under stress, but be mindful that constant increase in temperature (about 37.5 C) is something to report immediately to your health team. Basically, anything that doesn’t feel right should be reported; my intention here however is to outline that there are somethings that are happening that may cause sudden changes in your vital signs, but may not immediately be a cause for concern. It is therefore important to follow your symptoms and learn from them during each cycle.
Living with cancer is something new to me, that is despite all that I have gone through, which includes renal failure, a renal transplant, some smaller surgeries along the way, and first line treatment with immunotherapy. I have several more things to track along my cancer treatment, and have to rely on my own understanding of my body, the feedback I receive from my clinical team and what I learn from others. But at the end, it is about me, it is about us, and what we want to accomplish. It’s about feeling healthy each day, and trying our best to see things in a different view, trying to be happy and leading a life that others to also be part of. I recently lost a good friend to cancer, I met him at the hospital when I was very ill before my cancer diagnosis, and we had a talked about staying strong at each phase of the way. And what I learnt is that cancer is just another part of us. It’s as unique as our own body and mind; and the body may tell us that it is damaged or that is hurts, but the mind that keep us going strong. Cancer care is more mindcare than it is healthcare. And it’s also about respect and understanding of the body. Cancer is as much of life as anything that we do in our lives. It grows with us. It’s part of what forms us. And with treatment and a good outlook in ourselves to get better, it’s at least a chance to live with it. I would like to end this on a more positive note, but with the vast number of people living with cancer and their experience with it being so vast, I do not want to generalise a response to this. I would just say that nothing in essence changes about us, we might all just be a bit more appreciative of life.
Edited on March 13, 2021 7:30 PM BST: Formatting and section reordering.